Things going very wrong after Dynesys

[LC in UK]

Help!
I had a Dynesys op in October '04 here in the UK (my 4th back op). Level L3-5 I think.
Was very impressed with improvements after initial severe pain for a few weeks.
Then a year ago my knees started swelling,and had no strength in my thigh muscles and also had nasty pains in mt feet. Ortho registrar said I had arthritis in my knees and synovitis in my feet (no x-rays taken). She said to continue at the gym but keep off the treadmill.
So I tried but gave up, couldn't hack it, not enough energy.
In December I was admitted to hospital as an emergency patient with severe abdominal pain LH side.
Now seeing colo-rectal surgeon who says I had intussusception due to part of the sigmoid muscle not working properly and adhesions from previous abdo surgery (including anterior spinal fusion). Having to use glycerin suppositories to empty the bowel until I see him again in July when they may send me to London for more tests.
A month ago my knees started giving out and walking became extremely difficult, my legs are dragging and feel very heavy. Sharp pains shooting down into my knees and around my hips from my lower back, both pains starting when I try to bend or stand up from sitting.
Had an MRI on 6th June which doesn't show spinal cord compression so as I'm not incontinent I have had to wait ubtil next Tuesday 26th June before I can be seen by the Ortho people.
I'm very worried by whats happening to me and even more by having to wait so long. My GP has been excellent writing to the consultants and keeping them informed.
Anybody have any info for me on Dynesys probs?
Thanks

[Maria]

I just wanted to say hello and welcome you here altho I'm sorry it has to be under painful circumstances.

Re your particular surgery I have nothing to offer except that I hope that someone here will be able to answer some of your questions or respond since they too have had this type of surgery ~

Please keep us posted on your status and I very much hope you will find some assistance in finding out what's causing the pain and some way to improve the situation~

take care, Maria

[LC in UK]

Thankyou for your kind thoughts Maria, very much appreciated.
Will post again after consultation on Tuesday,
Bye for now,
Lynette

[dshobbies]

Lynette,

I want to welcome you to the forum and say how sorry I am for your circumstances and pain. While I know nothing that could benefit you, I have heard of misdiagnosis and how one things can and does lead to another.

Aside from you specialists, does your GP think that all these symptoms could stem from the Dynesys or other back condition?

I don't know if you've been following the forum at all but Dr. Baumbach in Germany is the absolute best diagnostition I've every heard about. If your circumstances allow you to travel to Germany, it would be in your best interest to see if and/or how your conditions are related. I'm sure Mark can arrange for you to see him.

If this isn't possible, I know waiting is difficult, especially when you're in pain, but that's one of the reasons why we all complain about today's health care system, whether here or there. I do wish you well and please keep us posted.

Dale

[paindoc]

Sorry to hear you are having so many problems-If a patient comes to me with what you are describing, an EMG is in order to test the integrety of the spinal nerves. It can show if there are derangements in a particular nerve (i.e. it sounds like if the pain is wrapping around from your low back and going to your knees, it could be a problem with L4...an EMG can help demonstrate this). The MRI was also a good idea, but it sounds like structurally all is well there. Some times, scarring can occur in the spine which may not show up on a regular MRI unless it was performed with and without contrast which will help the scar tissue enhance. This phenomenon is most often seen after a posterior procedure that affects the epidural space-Fusion, laminectomy, etc., but it can happen anytime there is an inflammatory process. Inflammation causes a proliferation of fibroblasts which...you guessed it, make fiber or scarr tissue which can tether nerve roots and create symptoms like you are describing. The problem is that the Dyneses system does not require compromise of the epidural space to install, but I've seen it with anterior fusions which were thought to be able to circumvent this problem. The bowel issue takes priority at this point, but as I have posted before on this site, the Dyneses System has a major flaw, and that is that the screws seem to come loose over time and are perhaps affecting the nerve roots. I have also seen several cases where the spine surgeon placed the screws through the nerve root and not the pedicle!!!!!and couldn't figure out why the patient was hurting-problably not the case with you as you felt better after your surgery, but perahps these suggestions would be a good place to start. Good Luck-pain doc

[LC in UK]

Thankyou dshobbies and paindoc for taking the time to reply to me.
I definitely need a diagnosis and I hope that on Tueday the consultants will be making arrangements for further investigations so I won't need a trip to Germany!
The leading "contenders" for causing my problems I agree are probably scar tissue or Dynesys screws failing.
The colo-rectal surgeon and radiologists have both referred first and foremost to "previous abdominal surgery" - which may have caused the bowel problems but I'm increasingly concerned that nerve entrapment is responsible for the bowel muscle not working properly.
Wish the ortho and colo-rectal consultants would speak to each other on my behalf but it looks like I shall have to bring this thorny issue out into the open on Tuesday with my daughter giving me moral support!
I do so hope the EMG is suggested as this is so obviously what's required but if not I shall be seeing my GP first thing Wednesday!
Just don't want my world closing in on me any more than it is at present, I'm an active person and this pain prison just isn't me at all!
I'll be back....as Arnie said!!
Thanks so much for your support
Lynette

[LC in UK]

PS
Does anyone know what happens in the "loose Dynesys screws" scenario?
Is it a complex repair?

[fireyangel76]

LC,
Did you have a bone graft with yours? I am 4 months post Dynesys and I am not soing so well. My pain sounds similar to yours including the knees. I thought it was just old age!
I think I read somewhere if they have to replace the screws then they use bigger ones. I don't recall reading that it was difficult or dangerous. I somehow came accross an instructional site for surgeons, but I don't remember how I got there.
Hang in there and sorry for your pain. Keep posting here as you are the only other one I have seen here that had the dynesys.
Betsy

[LC in UK]

Hi Betsy
Nice to hear from you. So there's at least two of us out there?
No, I don't think I had a bone graft. Not bragging but I do have some nice big staples and some Japanese fibreglass stuff called "walastronide" ?? decorating my spine from the anterior fusion! Anybody got any of that?
As for the screws, I didn't know they used bigger ones but , like you, I read stuff on surgical websites, and they said the new screws are Hydroxyapatite coated so they bond to bone better for more strength.
You're still in recovery really from your Dynesys so I hope things settle down for you. I'm quite active considering what I've had done and I'm really resenting this extreme limitation on my mobility right now.
Let's stay in touch and hopefully recruit a few more to our exclusive club!
Speak soon, best wishes from Lynette

[Alastair]

At one time they fitted longer screws, they say there are 10,000 Dynesys out in Europe, but I haven`t met any, and a VERY limited UK number
Best
Alastair

[fireyangel76]

LC,
I have those coated screws in so I shall keep my fingers crossed and hope the bone grows around them.

Well now we are a group of two! I also wonder where all those others who have had this procedure are?

Nope, I don't have any other wonderful new materials in my back...yet!
I am with you. I started to become active and try to live a somewhat rather normal life about a month ago. That's when it went down hill. I must say I am able to get some relief when I lay down which I could not before surgery..So I suppose that is progress.

I got new xrays today and I go to my surgeon Wed. The screws look good to me but what do I know!

All this time I thought that being a nurse I knew so much about medicine and health. I am coming to understand the hard way that I know nothing about backs. I also am finding that there are too many Doc's that just don't know that much about backs either.

I'm hanging in too. I keep you posted!
Betsy

[LC in UK]

Hi Betsy
Glad you've got the latest Dynesys screws!
But I'm sorry you only get relief when you lay down, that's not so good?
Was it the nursing that gave you a bad back in the first place?
Mine was doing very heavy lifting in the office of all places when I was only 32 with 2 kids at school. Bang, my life changed. A severely prolapsed disc which took the medics a year to diagnose and gave a lot of sceptics around me a field day.......
Never mind, all water under the bridge now.
I understand there's not many people in the US who've had Dynesys fusions.
Wish a few more Brits who've had this procedure would write in, need more feedback.
It's 11.50pm here now in the UK, best get to bed, early visit from the gas engineer tomorrow followed by a long drive to see my orthopaedic consultant and see what they have to say about this deterioration.
But I'll have my daughter with me and we'll make it a day out!!
Hopefully I'll be back online tomorrow evening with some news, so I'm thinking of you and glad to know I have company!
Thanks for writing
Best wishes
Lynette

[fireyangel76]

Hi Lynette,
I hope your day with your daughter was good. Did you get any answers from the orthopaedic surgeon? I will see mine tomorrow. I am going to ask for new tests to find out everything I can about the condition of my back. I think there is more going on than just a disc. I think we will have a disagreement over that. My pain, his ego, I hope I come out victorious!

Nursing is probably what started me down this path of back problems. I have always had a job with heavy lifting. I was in the USAF as an EMT ambulance medic. I worked as a nurses aide when I was 16. Finally got nursing degree and worked for years on a medical/surgical-telemetry floor. These are historically the hardest floors and most people don't stay for 17 years as I did. I had many injuries over the years but never took them too serious. I was always told it is muscle strain and so I never thought much of it. I never thought it could happen to me that I would end up like I am.

My father was born in Lambeth. My mother's mother was from Cornwall. My best friend here is from London. Her parents have got their imigration papers and have sold their house in Scottland. They will be here Aug 4th. My tea supplier is gone! The american tea is like pi-- water! My madien name was Davies. I guess you know a few people there with that name! I was born in Canada. It took me over a year to get my Canadian passport. I have been in the US since 1966 and still have my canadian citizenship. Now that I have my passport I do plan on going to England in the next few years. My father lived at Sizergh castle during the war and I plan to visit their. Have you heard of Sizergh castle?
Betsy

[LC in UK]

Hi Betsy
Good luck tomorrow! I feel better now I've seen my consultant and I hope you will when you've seen yours. Maybe you won't have to fight?!
I'm going to have a spinal probe done soon (little tiny camera into the spine) so they can have a good look at everything. Apparently from looking at the pictures the Dynesys appears to be strong, it's the wear and tear on the level above that may be responsible for my problems plus scarring of the nerve roots. Well - all will become clear after the probe. Just have to be patient and wait a few weeks..........
I'm not surprised you've got so much back trouble with all the heavy work you did in the nursing profession. What a reward for giving so much care to others over the years. I know back trouble is very common with nurses.
Shame.
Interesting to hear of your family background, yes, Davies is a common name here, especially in Wales. My mother comes from Cornwall, Newlyn in fact, right down in the far west.
I've seen Sizergh castle on the web, very beautiful. In the Lake District. You will be very impressed with this part of our country, it's breathtaking!
Good luck tomorrow, will wait to hear from you.....Regards, Lynette

[fireyangel76]

Hi Lynette.
Well I went to my ortho yesterday. It went well. He said we may turn this in to a fusion but we will do many tests first to see if there is something else going on. He is also sending me to a rhuematologist to check for spondylopathy(sp). My rhuematoid factor was slightly elevated and my knees and shoulders feel like they are going to freeze up and cause me pain also. The good news is my screws look great!
I had been feeling like one leg was shorter than the other and sure enough my left is shorter than the right. Only 1 cm but i noticed it.
He told me to wear my lovely brace, but not too long at a time because it will cause pain if you wear it too long. I must say I wore it today while on the treadmill and it decreased my pain by half. Lets hope I don't pay too dearly for it later. I also didn't notice the one leg shorter while I was wearing it. That makes my think the problem is in my spine or pelvis. I often have pain radiating to my pelvis.
By the way did you ever experience "restless Legs" after your surgery. At night and especially if I lay on my back with a pillow under my knees I have an overwhelming urge to move. I have to get up and it keeps me awake untill I take something to knock me out. I think I saw it can happen after back surgery.
I hope you a hanging in there.

Betsy

[LC in UK]

Hi Betsy
Having problems posting a full reply, using quick reply to say I'm pleased your visit went well yesterday, well done!
Yes, I do get restless legs as well, and also got one leg shorter than the other, not as bad as it was before the Dynesys tho'...can't be outdone!
Best wishes, Lynette

[mmglobal]

cervical spine and throacic spine OK on MRI? If there are no obvious problems that can be responsible for your constellation of symptoms, I hope they'll look at the rest of your spine to rule out other potential issues.

Does the 'wear and tear' on the level above show substantial nerve compression in places that are likely to be responsible for your symptoms? I'll be interested to hear how the camera thing works out... please keep us posted.

Mark

[LC in UK]

Had cervical osteophytes diagnosed in 1983, not aware of any problems with thoracic spine.
Heard my consultant tell the registrar on Tuesday that my case was "complex". No doubt of that after 4 ops!
Have noticed the muscle spasms loosening up considerably today, whatever was causing nerve compression over the last few weeks seems to be resolving, although I'm not out of the woods by a long shot.
My knees are not so swollen either, very strange? Grateful for the letup tho'.
Desperately need to get exercising again, especially for my thighs but frightened of upsetting the knees!
What to do?
Will definitely let you know how the spinal probe goes.
Thankyou Mark for writing,
Kind regards, Lynette

[mmglobal]

with weakness in legs and no obvious source on lumbar MRI... when was last cervical / thoracic MRI?

[LC in UK]

Don't think I've ever had a cervical/thoracic MRI, only ordinary X-rays.
Had CT scans on abdominal area for GI problems this year , also sigmoidoscopy, gastroscopy and barium enema....phew!!
I think the sigmoid intussusception (telescoping) problem I had in December is due to part of the sigmoid muscle not working properly anymore. I wonder if this is due to the anterior fusion when they had to move the large intestine out of the way to get to the spine? Have a follow-up appointment with colo-rectal consultant next week.
Do you have a theory ?
Regards
Lynette

[mmglobal]

I wouldn't presume to have a theory. With weakness in legs and no obvious explanation, do they feel the need to rule out a potential cervical or thoracic spine problems?

Mark

[LC in UK]

GP has faxed Ortho Consultant with info about cervical spondylosis which was diagnosed over 20 years ago...(osteophytes). Have had intermittent problems with neck arms upper spine etc. since initial back injury in 1982.
Have advised various medics over the years that my arms and hands are numb when sleeping but nobody has taken any notice so I presumed it wasn't important.
GP is cross that I didn't tell the registrar about this at my appt. on 6th June but this guy wouldn't let me talk. Insisted on taking history and doing basic examination and then said they'd lost the CD with my MRI images on.
(which didn't show cord compression but I'm lined up for a lumbar spine probe in next 3 months)
Can now see that upper spine MRI IS important but getting the medics to do it is an uphill slog!
Meanwhile my legs get weaker and wobblier and the distance I can walk gets shorter and shorter.
Perhaps when I collapse in the street they might do the MRI !!

[fireyangel76]

Hi Lynette,
I am sorry to check in here and hear your not doing any better. Our health care system is not any better here. I think Dr.'s should be issued hearing aids upon passing their boards as a reminder that the best assessment tool is their own ears!
I am still hanging in their and my screws are too! Wearing the brace while exercising has helped alot. It is the difference between being able to exercise or not. I still can't stand, sit, or walk very far on pavement, but I am alright on the treadmill.
Betsy

[LC in UK]

Hi Betsy
Nice to hear!
Is it because you're able to hold on to the rail on the treadmill that you can walk better than on the pavement?
Hope you're not as wobbly as me? This is a new problem for me, only started in the last 6 weeks or so. Since 1982 when I first injured my back I've NEVER experienced wobbly legs before and I'm really worried about the implications, especially as it looks as if I'm being left in this state for possibly another 3 months. Back pain is one thing but losing mobility is something else, very scary.
On Cipro at the moment due to diverticular flare-up, that's nice on top of everything else!!
Luckily have an appointment to see the colo-rectal surgeon on Monday morning and I'm going to tell him about the wobbly legs too and see what he makes of that.....I'm sure these guys think I'm mad when I ask if there's a connection between the sigmoid muscle not working properly anymore and having all this invasive back surgery and scaffolding around my spine!
Not looking for a miracle anymore, just what you said, a doctor who LISTENS and hopefully a decent diagnosis so I knowwhat I'm dealing with.
I somehow think we're on the same wavelength!
Take care
Lynette

[fireyangel76]

Lynette,
I can't say I ever had wobbly legs. I am at a loss as to what it may be. Even with all my back trouble and nerve compression I never had wobbly legs.
Sorry to hear about the diverticulitis. Low residue diet while it is in a flare up, but I am sure you must know that already.
I am so frustrated with the medical care here. My OSS wants me to see a Psychologist for depression and Pain management. I am not sure that will help but hey it won't hurt. I have been trying to find one and get an appt with no success. They either aren't taking new patients or they don't do pain. I am also supposed to see a rheumatologist but can't get his office to return my calls. I know him and he is a jerk so I don't want to get him cross with me...so I wait. My OSS doesn't want to see me again until I do those things. Maybe he thinks it's all in my head and I am crazy. I just know that a crazy person could never handle the maze of healthcare insurance authorizations, finding your own medical care providers and specialists. I must be crazy I have been trying to do these things for 2 weeks now and am still a square one.
Oh well maybe this is my week and I will have success! I am still in pain but am determined to stay on my exercise plan..no pain no gain...really doesn't change my pain level anyway. I would just be happy if I could lose a pound or two!

[LC in UK]

Hi Betsy
What a struggle, it's very difficult to stay positive when everything hurts and you just want to get on and not have to think about how much more damage you're going to do to yourself by activity.
Worst time is first few steps out of bed, I stagger like Frankensteins monster from my bedroom to the bathroom! My knees hips and feet feel like wooden joints, just like a puppet would have with no cushioning in the joints.
Makes me feel SO old!
Thats the depression, no escaping that sinking feeling. I'm usually better after an hour or so, and my lovely warm bubble bath. Can't stand looking at my puffy knees and less than perfect thighs and they really need firming up but I'm scared to do the level of exercise needed!
Oh I have to laugh at myself otherwise I'd have no friends !
Hope you've got good friends too who do know what you're coping with, mine are very good and they tell me off for doing too much but if I just sat around that would be so depressing.
Colo-rectal surgeon I saw yesterday says problems are down to previous abdo surgery - especially hysterectomy possibly damaging stomach wall and muscles there. Wants me to have pain killing injections but he hasn't convinced me that it's referred pain. Think he just wants me off his clinic list.
We've got those doctors too Betsy! Some doctors feel better if they can convince us we're mad. If you're mad then I am too!
Well I have to wait for the spinal probe anyway so the Dynesys and other scaffolding can be checked out but that won't be for a few weeks yet, just have to keep staggering around!
Bet I've really cheered you up eh?!?!
Keep pounding the treadmill and think of me with a bolt through my neck!
Speak soon
Lynette

[fireyangel76]

I actually got a really good chuckle out of that posting. LOL! Sounds like we have the same thighs! I know the feeling in the morning. I feel as though I am turning into a statue. I think if I don't keep moving everything it'll just freeze up on me! Ah thats where the rheumatologist is supposed to come in. My left shoulder is coming in a close second to my back, then the right hip and leg. I am 48 going on 70. I have a few close friends and relatives to keep me in good company when I feel up to it. One of my friends just fractured her right leg...a pathological fracture. She called me asking if I can drive yet because now she can't. The problem is I can't lift her big casted leg to help her in the wheel chair. Once she is in I can't push her! So we both depend on our other younger and healthier friend to cart us around. She has also insisted we get a handicap parking permit...she said with all her lifting and walking for us she is going to laid up soon! I told her thats the price you pay for always getting to feel so young around us!

Yes I shall think of the bolt through your neck and you can think of me as a statue with bird crap all over me! LOL!
I hope you now had a good laugh.

I guess we are all mad!

[LC in UK]

Things are moving , got a date today for a spinal probe ( look-see with a tiny camera) July 23rd, day case so at least that's a start.
Can't wait..........

[fireyangel76]

Can you explain exactly what this camera probe thing is? I am very curious about it as I have never heard of such a thing here.

[LC in UK]

Spinal probe is a tiny camera into the spine through an incision in the lumbar area whilst you are sedated but not fully "out".
They can also deliver anti-inflammatories or steroids at the same time apparently and the whole thing is also done with some kind of radiological guidance.
Had this procedure done twice before prior to surgery so surgeon has a very good idea of whats going on.

[mmglobal]

I started a topic for epiduroscopy

http://www.ispine.org/forum/showthre...=2262#post2262

They can also do RACZ procedures along with this in an effort to detach adhesions from the nerves.

Mark

[LC in UK]

Finally have an appointment with a neurologist on August 21st and am in the process of purchasing a copy CD of the NHS radiological images taken of my neck and lower spine on July 23rd to take with me.
Shall make enquiries at the hospital tomorrow to see if I can have an MRI scan of my upper spine prior to the appointment, don't know if that has to be authorised by the consultant first though.
Realised I have a "hospital plan" that covers me up to a certain amount thank goodness, so at least investigations can start quicker than they would with the NHS. Have got a lot more worried about my situation since I saw my neck X-rays last week and hearing the registrar (different one!) say they were "not good".
Watch this space.....!!

[fireyangel76]

Hi Lynette,
I do hope you are able to get an MRI.
My dynesys finally feels as if I am now better comparitively speaking since before surgery. It is hard when you look at it day by day because when you are having pain everything feels like a failure. If I look at it over the past 7 months I am much better than before surgery. I can walk on treadmill 30 min with my brace on. Even better I can now GO SHOPPING!!!!Small trips buy hey I can go! I think I am feeling better all the time.
But all silver linings must have a cloud...while my back gets better the reat of my body is giving up on me. I have a problem at c7 and a tendonitis left shoulder that sends pain and numbness to my hand...just what I need. My health insurance is going to $10 me to death....every time I say boo they want $10. That doesn't sound like much but we already pay a hefty monthly premium.
I am trying not to follow in your foot steps but which each Dr. or physio visit I seem to sound more and more like I am.
I hope all goes well at your neuro appt. Keep us up to date!

[LC in UK]

Hi Betsy
So pleased to hear that you're seeing improvements at long last!! Well done!
Hopefully your upper spine problems won't hang around too long?
How nice to go shopping.....we women cannot survive without a little "retail therapy"! I still manage a little of that albeit with my gallop slowed down a little - I can still spot a bargain!
Incidentally I found an interseting website that talks about a link between Cervical Stenosis and Fibromyalgia. Think I put Cervical Stenosis and MRI scan into Google and up it came. If you get a chance try and read it.
Take care, speak soon
Lynette

[fireyangel76]

Well as I said the rest of my body seems to be going to pot. I went to the rhuematologist and he diagnosed me with fibromyalgia. I will have to investigate the connection to fibro and cervical stenosis now that my neck seems to be joining in with the rest of my aches and pains. Still not convinced I need a fusion at L5-S1 so I am putting that on the back burner for now.
It seems that medicine now a days wants to disect you and only work on one thing. Every time I go to a new DR. I get another diagnosis. I wonder if they take math classes in med school because I am not finding any that can add 2+2! I am sure all these things are connected somehow. I can't believe I can go from a perfectly healthy person with some back pain to falling a part at the seems. I guess like someone once said if all you have is a hammer every thing looks like a nail.
Take care and go shopping!

[dshobbies]

Hi Betsy,

I don't know how old you are but when I turned 50, things started going south, and I'm not just talking about my boobs. Men, you have your own southern exposure so don't laugh just because bras need to be made in 'long'.

I've had a bad back all my life. Now, I've got knee problems and quite bad tendonitis that seems to spread? Menapause brought on anemia and bone density issues. When I turned 40, I took no daily prescriptions. I soon developed (now severe) asthma. My thyroid quit working. I developed high blood pressure and a myriad of other ailments to the point, not including those prescriptions associated with my nerve damage, I now take 8 prescription drugs daily. I'm not complaining, it does no good and I find my friends are no different. Our bodies simply fall apart at some time, some of us, sooner and some later.

My own mother couldn't understand how I needed so many prescriptions where she took none, until about 2 years ago. She has now surpassed me. For her, it was later.

Different ailments require different intervention. I used to be resentful of all the medications I must take but then realized I should be grateful that there is something out there that can help me. Not so long ago, we either suffered of died. I am very upset with some side effects that interfere with life and am currently trying accupuncture as an alternative medicine. Time will tell but this is what it is.

By the way, when I heed my own advice, I do much better!

Good luck to you, Dale

[fireyangel76]

Hi Dale,
I am about to turn 49....ouch! Menopause seems so easy in relationship to all my other aches and pains. I have I think two good knees and two good feet. That in itself is surprising after being on my feet for years as a nurse. I get weird aches and pains that move about my body, that maybe the reason for the fibro dianosis. My left shoulder and arm down to my hand is causing me a great deal of pain. PT says its in my neck...Just lovely....I'm thinking of a full body mri/scan....just to save me a few trips. I am only taking 4 Rx's right now so you have made me feel better. I just hate taking meds but as you have pointed out, it is better to take them and feel better than to have nothing at all. I am such a whimp with meds though. I can't even drink alcohol because it causes total body rejection. Too bad cuz if I had a good drunk here and there maybe I would feel better or not care for a bit!
Well if I couldn't laugh at myself I would go insane....that I am sure would be another rx and another weekly appt.
As for my boobs..they went south a while back. Now the Stomach blocks the view to myt feet which is what my boobs used to do!
I have one goal...get my back better so I can stay bent over long enough after a tummy tuck! Then its on to the breat lift and face lift!
Oh who am I kidding I can't even afford botox unless I get well enough to work!

[LC in UK]

Great postings girls!
I agree how suddenly the body changes, I recognise the resentment feelings about needing medication too. I also try and manage without them, thats why I stagger about like Frankenstein's monster when I get up in the mornings!
I'm cross that I've had such severe neck problems that nobody's checked out all these years, no fun when it stops you walking normally and gives you bowel problems on a daily basis. From what I've read some of these problems may now be irreversible considering how long the spinal cord's been compressed.
Can't wait to get this sorted , get over it and get back to the gym and tone up again....how's that for optmism!?
Well thats the master plan anyway!
No doubt will be angry again after next Tueday's appointment with the neurologist, but never know......
Be in touch,
Lynette

[LC in UK]

Just to say my appointment with the neurologist today seems to confirm Mark's suspicions about cervical problems.
Neurologist is pretty sure that the forward slippage of C3 from C4 has caused "cervical canal stenosis" and is arranging MRI and other tests pronto.
Says my walking problems and bowel probs are very likely being caused by spinal compression high up and was amazed that I've never had an MRI scan considering how long these problems have existed.
Par for the course on this side of the pond I'm afraid.
Never mind, am finally on the path to getting something done, just hope it's not too late.
Once again, thankyou Mark for alerting me to this. I hope Diane's still making good progress too.
Be in touch
Lynette

[LC in UK]

C/Spine MRI shows "mild cord compression" but neurologist says it doesn't explain the extent of my problems so I'm lined up for brain scan, thoracic spine scan and possible lumbar puncture (hopefully not - nasty things).
Nothing to do with Dynesys at all it turns out, but hope it won't be too long before I find out what's causing the spasticity in my legs.
Anyone else been diagnosed with "paraparesis" ?

[fireyangel76]

Hi Lynette,
I hope you are fairing okay thru all of this. Now that my lumbar spine seems to be holding it's own if I behave, my cervical is jumping right on in there! I have only had xrays so far and I have no space between C6-C7. I guess that explains the nerve pain down my left arm. I also have a lousy shoulder that has very little range of motion but they say it isn't a frozen shoulder. I have been diagnosed with fibromyalgia and as I feared all my aches and pains will be passed off as that. I may not be an MD but I so recognize nerve pain when I feel it and it is definitly related to my neck. Oh well I am having some relief with physio so I shall not complain any more for now. Thank goodness I have no wobbly legs. I have been losing my balance a lot lately. I think I am just not very coordinated in my old age.
Hope you are not in too much pain. My dynesys is finally giving me hope that it might just work in reality not just theory.

[mmglobal]

Originally Posted by fireyangel76

I have been diagnosed with fibromyalgia and as I feared all my aches and pains will be passed off as that.

Betsy... I'm so glad that you get this. You may or may not have FM. It's often used as a 'trash-can diagnosis'.... something to tell the patient to satisfy the need for a diagnosis. It often keeps our doctors from researching other problems.... every pain and symptoms gets written off as FM. Worse is when it makes the patient completely accept everything as their fate, and they give up. In some cases, it is our fate. In others, it's a BS excuse for the doctors to stop investing is a situation that they don't understand. They wont' tell you, "I don't get it". For many of us, we have not alternative. But, giving up should only be done after other reasonable causes have been ruled out... not before!

FM is not a disease. It's a name given to a constellation of symptoms.

Mark

[mmglobal]

Originally Posted by LC in UK

C/Spine MRI shows "mild cord compression" but neurologist says it doesn't explain the extent of my problems so I'm lined up for brain scan, thoracic spine scan and possible lumbar puncture (hopefully not - nasty things).

"Doesn't explain" does not rule-out the connection. I'm glad that your doctor will troubleshoot other likely causes. Keep in mind that the MRI is a static image of your spine as you are laying in a neutral position.

Paraparesis is a common description of weakness associated with nerve irritation or damage that impairs the signal, making some muscles not fire (or not fire to capacity) when commanded. Inability to do heal or toe raises is a good example of this type weakness. More advanced is foot drop.

Remember... "i'm not a doctor... yada yada yada" Take everything I say with a grain of salt... they are just my layperson ramblings.

Mark

[dshobbies]

Mark,

'Layperson ramblings' by eyeballs! We get more informative into from you than from many an uncaring/unsympathetic doctor. Though not all doctors fall into that catagory, too many I've met do so thanks for your 'ramblings'. At least we know what to ask and what to/not to accept as a response.

Ramble away, Dale

[LC in UK]

Thanks for the input everyone, and that's a very pertinent point Mark about the static image. It doesn't always mean the compression stays as the picture shows, it can be better or worse I suppose?
Just so worried now that these "puppet legs" with knees that feel like there's no cartilage in them are there for good.
Can't take a full step forward, feels like somethings stopping my hip joints from moving. My feet are just plonking down and the word "spastic" really does describe my gait.
Just have to be patient I suppose and wait for these tests to be carried out.
I'd much rather face another decompression op, even if it is thoracic, than be told I have some inherited degenerative nerve condition and face a future on sticks.
Not aware of anyone in my immediate family with this disease so maybe it will turn out to be cord compression, never wanted cord compression so badly before!

[fireyangel76]

Hi Mark,
I really do get it! FMS is what patients have when their MD"S lack the patience to actually work patients up for what seems like too many aches and pains! I may or may not have FMS. I do meet the criteria but I think almost anyone could. I don't really need a name for what I feel, I need a solution!
Anyway feel free to always do your very knowledgeble rambling! I get the sense you have dealt with someone being passed off as FMS before.
It is nice to know that you get exactly how I feel about the fact they now want to point at the FMS for every ache or pain I have.
Thanks for being here for all of us Mark!

[nigel]

Hi. I have beem reading about your dynesys and as a result am quite concerned. I am due to have the op on the 12th nov. My problem is that I had a disc out a few years ago thru a slipped disc from tennis. Now another disc is degenerating and that apparently is excreting a chemical which inflames the bone. He intends to remove that disc and fuse and then use dynesys on the disc above to try to prevent more damage to that. Sorry to dribble on but I am wprried about the op the pain after and everything. Can anyone here help me with this worry. Many regards Nigel

[mmglobal]

Nigel, read about DSS here: Dynamic Soft Stabilization

There are several huge advantages of DSS over Dynesys. Location of pedicle screws for DSS is much less likely to result in broken screws... one of the more common complications with Dynesys. Also, the modular design allows combination soft stabilization / fusion procedures. So, the same system could be used for your fusion and soft stabilization. If things go bad for the top level, converting to a fusion would be removing only the soft stabilization module and replacing with fusion module. Same screws... same system. Also the control of motion with DSS is different. I should have more info after NASS next week.

Mark

[nigel]

thanks for your reply. My problem is I live in UK and nobody has mentioned DSS. I am running out of time as my op is not too far away and I am having 2nd thoughts. I have heard it is extremely painful post op. I have not been to work since January and am eager to go back but if I don't have op I wont get back, but I am very worried about it all.

[mmglobal]

It's pretty new... I don't know where it's available. Bertagnoli is doing them, but that implies getting to Germany and self-paying for the surgery. I don't know the costs involved.... I'll find out and let you know if you are interested.

Mark

[LC in UK]

Hi Nigel
As the originator of this thread I can tell you that Dynesys is not responsible for my current problems.
I was told today by a neurosurgeon I need a 3 level cervical op and that is the reason I can't walk properly.
So get lots of advice but I just thought Id explain to you what has happened with me.
Good luck and keep in touch,
Lynette

[fireyangel76]

Hi Nigel,
I had my dynesys in feb of this year. I am not sure it will be my magical cure as yet. I really do not have any complications and I am much better than I was pre-op. I still have limitations and bending, standing, or sitting for long periods can still be quite painful. My leg pain is gone for the most part, although I still get right buttocks pain and burning sensations in my foot. I do go on my recumbent bike and treadmil for 30 min each day and am building up some of the muscle again.
I really did not find the surgery too painful and I was off most pain meds by 2-3 weeks. I was going for walks around the block at 2 weeks, but that probably wasn't the best idea and I paid for it after. I don't have any specific complaints about my dynesys and I do have great mobility in my spine but it hurts if I bend too much or for very long.
I still have daily pain but don't use much in the way of pain meds too often anymore.
Good luck with your decision. I hope this helps.

[teg]

Hi Lynette,

I am sorry to read about you cervical spine disease. Your thread has been very helpful to me . May I ask how is your sleep/rest? I also have 3 leve cervical disease (1 level above and below non-fusion c5/6). My sleep is difficult. My head feels like it is too heavy for my neck. I have not been able to find a good sleeping position, including Trendalenburg.

Thelma

[LC in UK]

Hi Thelma
Sorry to hear you're having trouble sleeping. I only use one pillow, a good feather one which I push into shape last thing so it fills the hollow between my shoulder and head.
I've had many severely painful episodes with my neck over the last 20 years or so and I used to take anti-inflammatories to get through the first day or so. I think the stress of the last couple of weeks has precipitated a bit of achey pain right now though, just above my shoulders.
But I don't feel the heaviness in my head that you describe, in the past it's always been sharp pain that made it difficult for me to get my head off the pillow in the morning.
So basically my way of coping was anti-inflammatories and the right pillow.
I hope you find something that helps you soon, losing sleep night after night is debilitating,
Best wishes
Lynette

[nigel]

Hi all sorry I haven't replied to your kind help. I suppose I will go through with the dreaded op. The problem is that at present I am not in too much pain as I haven't worked since January this year, but i know that if I were to do anything like work I would be in great pain like I was when I had to stop. I have had my prew op assessment and during this the consultant Mr Shepperd who apparently is the pioneer of Dynesys told me that the reason for my pain is the disc above where the one I have had removed already. It had degenerated badly and is excreting some chemical that is inflaming the bone. He is thinking about removing that one and possible fusion and then using Dynesys on the one above that to protect it from further damage and degeneration as it is not as bad. He says with this protection it may even regenerate. Anyway sorry to ramble but as i'm sure you will appreciate I am bricking it.
Thankyou again for your replies and wish me luck. Regards Nigel

[nigel]

Hi Lynette just a quick note to you. I am in Uk to where did you have your op done. I hope you are feeling better and although I feel for you with the probs you have I am much relieved to hear they were not caused by dynesys. All the very best Nigel

[fireyangel76]

Good luck Nigel! I hope you have a quick and speedy recovery from the surgery. I will be very interested in how you do after surgery. Lynette is the only other person I have spoke with that had Dynesys. I hope it works for you!

[nigel]

Thank you for your reply. I to hope all goes ok and as soon as I am able I will let you all know how it went. (if I survive lol) I do not like hospitals so I will be aiming to get out as soon as possible. When I had a disc out I was out the next day so I will be trying for this again. I think as long as you can show them that you can walk and pee they do not keep you in any longer than is needed. This is what I am hoping anyway. My consultant tells me that the pain is comparable to the pain I would have got in my disceptomy, which was not good but I survived. Hope to speak to you all again soon as I am getting some comfort in this forum. Kind regards Nigel

[dshobbies]

Nigel,

No one likes hospitals or surgeries but another way to look at it is that we're more fortunate than our grand and great grandparents.

I do wish you good luck and an easy recovery. Most of all, I hope this takes care of your pain permanantly. When is your surgery?

Dale

[nigel]

Hi Dale thanks for your reply. I am having my op a week on Monday 12 Nov. I guess I should be grateful and I probably will be after but at the moment full of apprehension. Once I get in hospital I know I will be ok its just a very slow lead up to it. Anyway nice to hear from you. Regards Nigel

[LC in UK]

Did you receive my pm Nigel? sent yesterday

[nigel]

Hi Lynette. Message received thanks. I have replied in your pm folder. Good luck tuesday. Regards Nigel

[LC in UK]

Thanks Nigel!

[LC in UK]

Went for my Dynesys check yesterday with my orthopaedic surgeon - everything seems to be ok lumbarwise - and he has written to the neurosurgeon about the prospective 4 - 6 month wait for the 3 level discectomy and fusion asking him to bring this forward. That makes me feel better, just have to wait for it to filter through the system along with the letter my GP has written on the same lines.
Having been unable to walk properly for the past 6 months it freaks me out wondering if there's any irreversible nerve damage being done. Leaving me to wait even longer is unjustifiable, but NHS budgets seem to make it "ok"....
But at least I have my GP and ortho consultant on my side.....
What an old crock I feel! Just want to be put right so I can be more active again, like everybody else on this site!!
Bye for now
Lynette

[nigel]

Hi i have just had my dynesys op and if anyone has any doubts about whether or not to have it just pm me or leave message on this forum and I will get back to you. Regards Nigel

[mmglobal]

Nigel, I hope the news is good... when you feel up to it, please post more details about how surgery went, change in symptoms, recovery, etc...

Thanks and good luck!

Mark

[LC in UK]

Pleased to hear everything went well for you Nigel, you certainly sound a lot brighter than before you went in! Things obviously went very well.
So you're not Nigel of the green Capri 1974 after all!
Another Nigel in Bexhill!
As Mark says, post some more details of your Dynesys experience when you can, there's not many of us in this club!
I'm still hoping my op will come through quicker than the projected 4-6 months so I can get it over with. Have an appointment for EMG tests on 19th December at Kings London.

[nigel]

Hi all. Well its now sunday 6 days after my Dynesys. I'll give a short run down on what I thought I was going to have and what I actually received. I originally thought I was having L5 disc out and possibly fused and Dynesys at L4. After speaking to the Consultant post op I found that in reality I had had Dynesys at both levels. He when he operated found that the L5 had just about fused itself so he decided to take the pressure of this and L4 by using D. My main symptom originally was apparently caused by the chemical excreted by a degenerating disc L5 inflaming the bone. This showed up on MRI scan as white areas on the bone. Anyway so far I am doing ok. I went in on Monday 12th Nov and walked later that day and was discharged on Tuesday PM. I have come off the stronger meds as they caused me constipation which was even more painful and I am now just on Paracetamol. Not really enough but bearable and better than having chronic gut ache. Back is improving every day going for follow up on the 27 Nov and also expect to have stitch out then. (apparently they used one long one for this). Anything else anyone need or wants to know I am always willing to help. Regards Nigel

[LC in UK]

Well done Nigel, it all sounds good. You were discharged even quicker than me!
Glad you got some info on the procedure, I think it helps a lot to know what was actually done and why.
Your experience of pain medication was exactly the same as mine. In the second week - I think - I did get some severe pain which worried me and I had to take Arcoxia (now banned I think) but soon went back on paracetamol for the same reasons as you. The more you can move around the quicker your recovery I think.
I'm very angry at the moment as my first outpatient appointment for my cervical fusion has been delayed for a further 2 months, from January 7th to March 3rd.
Thats despite letters from my GP and Mr S at Hastings. Wonderful. Not my happiest weekend.
Anyway, glad to know you're on the up!
Be in touch
Lynette

[fireyangel76]

Nigel,
Glad to hear your experience with the dynesys surgery wasn't as painful as you thought it might be, and welcome to the small handful of us here that have had it.
I would have taken constipation with the pain meds....all I got was vomiting! Needless to say I came off those quick.
I hope you continue to have a uneventful recovery and your discomfort be minimal.
Did you have leg pain pre-op? If you did, is it less already?

[nigel]

Hi I did not have anyleg pain as my problem was more the degenerating discs. Before I had my disc out 6 years ago leg pain was the main problem but not this time as no nerves were involved. I'm sorry your meds made you so ill I guess constipation was not so bad after all just real painful at the time. Have gone back on the codeine phos today as constipation gone and want to suffer as little as poss. I won't really know if all has been a success until op pain has all gone but I must say I don't seem to have the same pain as I did have but am reluctant to commit myself as I don't want to set myself up for a fall if you see what I mean. Anyway please keep in contact. Many regards Nigel

[nigel]

Hi Lynette sorry to hear about your newest delay. I guess these people can't feel your pain and to them you are just a name. Did they say why the delay. It doesn't seem fair. I have always been lucky and once in the system things have always moved fast for me. I hope you get some joy soon its horrid just sitting around waiting for something to happen. Good luck to you. Regards Nigel

[ddavie1]

There are a few posts related to the uncertainty of the volume of dynesys occurring in the US. I have no clue how often it happens but I know I've had it. Sincerely, since the surgery my feet and legs are literally perfect. Prior to the surgery I had already endured 2 laminectomy's (sp) and COUNTLESS "pain relief" injections such as facet blocks and the RF stimulations to "burn" the nerve endings. Nothing was working.

The dynesys has done an excellent job relieving the leg and foot pain but my lower back is a train wreck to this day. I am and IT professional and spend a great deal of time at a computer workstation. I have plenty of opportunities to move around as well because of other workstation support for company users but the time is still spent in near agony with my lower back itself. It's as if the surgery corrected only the issues with my appendages and not my lower back. I am still taking Norco, oxycodone, valium (muscle relaxer) and occasionally I am still taking fentanyl (200mcg) which is given to most cancer patients who are in dire straits.

It's driving me insane to have gone through so much for the last 4 years with 3 surgeries, countless injections and so many many prescriptions I want to vomit. If I had that Rx money back I could buy my own private jet!

Anyone else having similar discomfort in this fashion...basically only a partial fix? It is so tiring to live in perpetual back pain because it drains you personally and those around you that do not have it or have not experienced it just can't understand the limitations it creates.

[dshobbies]

ddavie1,

I am so sorry, after all you've gone through, that you're still in such pain. I know you want to scream at the world. Spinal 'fixes' are still in research infancy though with so many sufferers, you'd think we'd be further along by now. I met a man yesterday who had 3 fusions and is scheduled for his forth. (I think he'll call you Mark)

Partial relief is also a common tale but in this instance, no one wants their misery to have company. You might want to give Mark a call too... you'll never know where it can lead.

Welcome to the forum and I hope your cure is out there somewhere.

Dale

[mmglobal]

Such a high percentage of problems w/spine surgery have to do with our inability to understand the relationship between the pathology seen on the films and the pain generators. As Dynesys has unfolded in the past several years, I've been wondering how it's all going to shake out. It's a technology that appears to be a much easier surgery than ADR, but it is a motion limiting device, not a motion preserving device. Because of this, many of the surgeons who are committed to motion preservation consider Dynesys to be something applied further down the line than ADR. Others consider it an easy fix to a complex problem... and have some success with it.

I have many clients with Dynesys... some with excellent success and some with much less. Many of the 'less than successes' have experienced the dramatic reduction in leg pain, but no help with the low back pain. The hope that the surgeons have is that even though the painful disc is left in place, offloading the posterior annulus and reducing motion will relieve or reduce the LBP.

Nigel, would you mind starting a thread to discuss your Dynesys experience? DDavie, would you do the same? Your experiences will be important to anyone researching dynamic stabilization, as has Lynettes. They tend to get lost when embedded in another long thread.

DDavie, did you have discography, or has it been suggested as a next step?

Mark

[ddavie1]

I have not been introduced to discography...my "back" story (use both definitions of the word back there (LOL)) I'll go into in my new thread. According to my surgeon the dynesys was my best bet at my age and the type of issues I have had. And it was great during "recovery" sans the residual surgical pain. I was in surgery for over 7 hours, have 2, approx 12 inch scars on my back so I'm sure it was an ordeal even my surgeon won't soon forget. I remember him telling my family and I that it was typically about 2 to 3 hours...certainly not seven. I believe my particular problem on the table came from having to complete yet another laminectomy prior to the dynesys, the scar tissue that was so prevalent because of previous surgeries and the amount of muscle to contend with at 3 levels.

Anyway - rather than type this all twice, I'll start the new thread and try to be as specific as I can for those that are looking for input and opinion on this procedure. I appreciate the support here - I did a lot of "medical" research on dynesys prior to having the surgery but never once wandered into a forum...I read nothing but doctor's papers, background material, production notes, etc. Honestly I was trying to avoid a lot of patient opinion because I wanted more expert opinion so to speak and quite honestly I was just so ready to do anything that eliminated the pain I almost didn't want to squelch the possibility it held for me.

So again, thank you for the responses...and thank you to the founders here. A lot of people think internet "support groups" are useless but I have to say that the connection here between people, their problems and quite apparent true concern is invaluable - just my 2 cents!!

And please - call me Dennis!

[steveb872]

Hi, new to this, posting from the UK. I work in an operating theatre that does spinal surgery, the consultant I work with did a Dynesys fusion on my in the summer of 2006, I was back to work in 10 weeks. Since then its all been downhill, lol. I am off work at the minute with raging back pain, I am taking 20mg morphine every 6hrs. A recent MRI shows the screws are in place an have not migrated. My surgeon stopped doing the Dynesys about 12 months ago because he was not convinced about the long term sucess rate. I have now been refered to a different consultant, my symptoms seem to point to a facet joint problem, boy is it painful, so hopefully nothing to do with the original surgery, but on reading various web sites not 100% convinced. See ya

[mmglobal]

Steve... thanks for the update. It's pretty hard to get our head wrapped around so many new technologies. We've seen some wonderful successes with Dynesys and too many not-so-successful surgeries too. Real world experiences like yours will help us to evaluate our options more effectively.

Is there anything unique about your configuration that makes the doctor understand why you were not a good candidate, even though the indications were there for him?

I hope you find some relief... thanks for sharing.

Mark

[johnb]

I've been in touch with a UK patient from another board that had good initial results from dynesys but has gone downhill after time. She had a battery of tests but the screws looked okay. She also said it has fallen out of favor in the UK according to her surgeon. It has created additional leg pain for me. It started very soon after surgery and an MRI with contrast didn't point to scar tissue. I'm having mine removed without further spine surgery. It isn't worth irritating the disc above it.

John

[eternaloptimist1]

I started this thread in June 2007. Only this week have I finally been given a diagnosis for the leg weakness and pain I've had since then. I finally gave up on the major London neurology hospital as they said they "knew I had a problem somewhere but couldn't find the cause of it."

I went private and found a good surgeon well experienced in complex spinal surgery who ordered a cat scan and now all is revealed and it's shocking.
First off, the anterior fusion done in 1995 at L4/S1 has not healed and the staples are coming out, in fact the L4/5 staple can be clearly seen almost completely out.

The Dynesys screws ( L3/4 ) are badly placed and some of them have protruded through to the far side (anterior) of the vertebrae, the threading on the screws can be clearly seen on the "virtual reality" pictures poking out.
The screws have damaged the facet joints and there are fragments of bone loose in my spine.

The disc above the Dynesys has prolapsed also.

Plus the surgeon says my leg weakness IS due to cord compression in my neck.
I'm getting revision surgery soon and I've been told to contact the surgeon immediately if my neck/arm symptoms get any worse.
I'm devastated to learn how much damage has been done to me but hugely relieved to have been given the truth at last.

[dshobbies]

Hi ET1,

I wish I had more comforting words but knowing what's wrong is half the battle. Finding a good doctor is the other half and it now looks like you have both.

I hope your revision surgery is successful but what are you going to do about your cervical cord compression?

Dale

[Maria]

EternalOptimist,
While I'd be pretty upset to hear about that report as well if it were mine after all this time I know I'd be relieved to at least know what was going on vs. hearing "there's a problem somewhere but we don't know where/what it is...". Here's hoping your revision surgery goes smoothly with an excellent outcome and your cervical issues will hold off long enough for the revision surgery recovery in full. Best wishes with all and please keep us posted.

[eternaloptimist1]

Hi dshobbies and Maria
Thankyou so much for your support and best wishes
It's been a long long journey and I'm not "out of the woods" yet where actually getting the first lot of surgery done is concerned, but considering how much heel dragging has been done by so many health professionals who said they 'couldn't find the cause of my problems' it's a BIG breakthrough to have got this far.
Watch this space as they say and I'll be back to let you know how things progress.
Once again many thanks for your kind thoughts and I wish both of you good health too.

[fuzzy]

I am so glad you found someone who is truly interested in diagnosing you. I have a similar situation with my neck and it is amazing how frequently this gets overlooked.

I wish you the best!

[Katie]

EO, I'm very late in coming to this thread and am astounded at what you've had to go through.

But to think that you finally have an answer after all this must be such a relief. I'm always curious about the repercussions for the original doctors who are responsible for doing this sort of thing. Your screws were put in wrong? And because of that your facets are damaged and bone fragments are now present?

And the doctor has no responsibility for all this?

I always thought that having surgery would be the best thing that could happen to me, with all the pain and misery I've gone through. But obviously choosing the right surgeon is at the top of the list. But how do we know who is the right one?

May I ask how you decided to use the first one? Was he recommended to you, or just one that was in your 'system' and accepted? Having gone through several consults with my local ones, I wouldn't let them touch my dog, but the ones I do trust (out of country and not covered by my insurance) would cost me my home, even more maybe.

I am so sorry that you had to go through this, but am thrilled that you are coming to the end soon. Congratulations for having enough strength to carry on. Your 'name' says it all.

[eternaloptimist1]

Hi Fuzzy and Katie

Thankyou for writing and I can see you've both been through a heck of a lot too.
I think it was my sense of indignation that constantly fired me up to keep up the quest for an answer.
Also my first two spinal ops were carried out as "surgical emergencies" after lengthy delays so from experience I know how easily the medics get things wrong.
Into this equation comes the "social background" element of case evaluation and in my case there should have been some very red faces.
Too easy to dismiss genuine pathology when the patient is perceived to have a 'difficult life'.
I've recently read a report written in 1992 by the surgeon who managed to damage me twice that states '.... relevant to her back problem is the fact that she emerged last year from a four year relationship with a live-in gentleman friend which may have had some effect on her son who is now aged 23....'

In that same report he goes on to state ....'she is walking increasingly with a waddling gait. She gets a feeling of pain and weakness in her legs when she walks anything up to 200 yards and finds she is dragging her legs'.
Hmmmm.....relationship wasn't brilliant but he wasn't responsible for that!

But I must have been worth experimenting on though because three long years after that in 1995 he performed an anterior fusion at L4 - S1 using a fibre glass type compound with wollastonite and large staples. This has never fused and the staples have migrated and I only found out that fact on October 26th.
Guess all the surgeons and neurologists who have supposedly looked at my scans for the past three years and declared ' no operable target ' should have gone to Specsavers?

The 'psycho-surgeon' was recommended to me by someone who ran a support group for chronic pain sufferers, and as I was a lot less well informed in those days and getting no help from my GP I asked to see him privately.
Because he eventually offered to operate on me when according to my GP nobody else would I thought he was a hero!
And then because I was still having problems he did the Dynesys fusion in 2004 - yes - on top of a failed fusion. Wonderful.
That was supposed to be done under X-ray guidance for the correct insertion of the pedicle screws but I guess they ran out of coins for the electricity meter on that day?
Some of these screws have perforated the anterior cortex of the vertebral bodies, wonder how far these screw tips are away from internal organs?
The fact that I've been complaining of left sided lower abdominal pains ( iliac fossa ) for a number of years didn't prompt the gastro-intestinal guys to tell me the truth either. Or they also need new specs.

It's been like screaming behind a thick glass wall these past three years but I quickly cottoned on to the fact that this time they were going to 'push me out to sea'. Terrifying scenario.
I can't begin to tell you what a huge relief it is to finally have found a surgeon who is very concerned at the state I'm in and has put it in writing.
I see my GP on Tuesday and before too long things should really get moving.
I'll let you know how things progress.
Thankyou once again everybody for the support you've given me, from reading your experiences I gain strength because it's only through sharing this stuff with people in a similar scenario that I can keep a reasonable handle on things, or equilibrium the psychologists might say?!
Be in touch....

[Katie]

Wow, just wow.

It is going to take two or three readings through this again to wrap my head around your experiences. What a nightmare.

Are there no repercussions for that surgeon? What about their oath of "do no harm" ??

He must have graduated from the same school as the last surgeon I saw, who did no neurological testing at all, (even though several previous physicians diagnosed severe compression of my spinal cord, cervical myelopathy, through hyperreflexia and the Hoffman sign), yet decided that my numbness in my arms and hands was simply because of carpal tunnel. Again from no testing. There must be some way to prevent these guys from doing similar things to others, you'd think.

You are so right about getting support from others here. I want to thank you for sharing your story. Without it, other patients would never believe that this could happen, and would take their surgeon's word as gospel.

Take care of yourself. You certainly deserve it.

[eternaloptimist1]

Hi Katie
I hope you win your appeal. How on earth can they let you go on like that with severe cord compression? It's yet another horror story. You must be very frightened like me that patients can be treated in such a cavalier fashion. What is the rationale here when such obvious medical evidence is seemingly ignored?
I'd love to send copies of my scan pics to the consultants who neglected me for whatever reason. I cannot believe they did not see what my new consultant saw. I may confront them later but not yet.
All the best to you Katie, lets hope you too get the help you need.

[dshobbies]

I am a little hesitent to post this because I don't want anything to come back and bite someone in the ass - but...

When I'm aware I've received bad service from a doctor, I refuse to pay the bill. I usually write them a letter explaining the circumstances and will take it as far as necessary. I have done this 5 times, twice to a hospital and three to private doctors.

If I'm paying for a service, which I not only don't receive but am left in worse condition than when I started, I don't pay. I should also mention that most times a doctor will not agree with your assessment lest they be sued for malpractice.

I just as easily applaud and remark on exceptional service. For any of you who were dismissed or pushed aside, treated callously with very obviously wrong diagnosis, speak up. No one else will so blow your own horn.

[eternaloptimist1]

Hi dshobbies

I'm paying privately with the new surgeon but all the previous consultants have been NHS except the initial consultations with "psychosurgeon" so I couldn't apply that strategy. More's the pity.
The new guy is a very eminent complex spinal surgeon who has done many revision surgeries but this time he hasn't shut the door on me, even though the eventual surgery may be through the NHS. Thanks again for your support!

[Maria]

Dale,
I surely wish WC hadn't paid for my 2nd surgery but then again WC is such a different entity.. well I'm thankful as horrible as the results were I didn't have to pay.

Then again getting back to non payment or refusal to pay for a service rendered that was not good or adequate, poor or leaving one in a worsened condition.. doesn't that bill eventually go to collections?

Long ago I did argue against a service that I felt was very poorly delivered or actually not delivered or rather I refused to pay the bill and I believe because I worked at the same hospital as the doctor that I saw and wrote enough letters arguing my case with the help of a friend who put a *legal* tone to it I was fortunate enough not to have to pay for the *non* service.

I had a much more recent experience that was just unbelievable in what happened in that I was charged for specimens that were never taken but because the swabs were sent to the lab as they were unwrapped and ready for the particular tests and the doctor didn't state in her charting that she didn't do the particular tests/take the particular specimens~ I was charged for them ($300) and not only that the lab should have stated that there wasn't enough or any material there on the specimen swab but rather stated that the specimens were negative for the specific entity and so I could not prove that they weren't even taken.

I had such a battle over this but because of the doctor's documentation and the lab's reporting I couldn't prove that the tests weren't done.

I tried not to pay that bill but had to as it was going to collections. I stopped using that medical office and started going to another but I learned to be more verbal/vigilent about what is being done in my regular medical office.

I try this with my WC visits as well tho it's difficult.. I'm not paying but I'm also not getting the level of care that was once available and this is due to the WC reform and how it's affected the care available/administered.

[Katie]

EO, I stopped asking that question about leaving me like this a long time ago. I would love to take them to task and make them accountable after all this is over with. The bad ones of course. The others are hamstrung because of insurance issues. I simply cannot afford a five level surgery either in Germany or the US.

I am stunned by the comments in your file. That should be addressed at some point too, but like me, I assume you just don't have enough energy to even thing about that.

Take care, and please keep us posted. I'm thinking of you.

[eternaloptimist1]

It's the arrogance and conceit of this man that sticks in my craw. From what I've heard it's not uncommon in the UK for this attitude to prevail towards people with spinal problems but when there's clear evidence of pathology I wonder if it's a defence mechanism on the part of a surgeon who's not up to his job to state that symptoms are being caused by a patients background.
What I'd really like to do is get this subject the oxygen of publicity - I don't think this rationale is applied in other areas of medicine - only back problems.

[dshobbies]

Perhaps surgeons more than others think they're G-d but, trust me, it's not that exclusive a club. I had a horrific experience while pregnant with our second son - at the hands of two doctors who, IMHO, cared only about their own reverence.

As for bills being turned over to collections. Again, in my experience, once you report this doctor or hospital to the AMA or other governing agency, I have had no further billing issues. Please, please, please, this is a drastic step and stays on their file. I always start with a phone call, then a letter, a follow-up letter... and give them a chance to understand how and why I feel the way I do. It does take a little bit of living before you discover that their education makes them no better than you, just better educated. Learning to speak up for yourself is not easy, especially with a presumed authority figure...but a betrayed trust is inexcusable.

Just remember, this is a two way street. When you get exceptional service, from anyone, under any circumstances - speak up and let them know. When you speak from your heart, you can't go wrong.

Maria, your specimen experience is disgusting, pure and simple. Don't know what I'd do!

Whatever and whoever, have a great one!

[eternaloptimist1]

Everything you've said is right!
This surgeon does know that I'm very well informed on Dynesys and his involvement with it plus the papers he's written that are available on the web but he still couldn't "see" anything wrong on my scans when I saw him this summer. But at least I sussed him out and knew I was wasting my time with him.
None so blind as those that will not see.
Investigating what's happened and getting responses as to why others since have neglected me may come later.
My mental energies are now directed towards what may be happening surgerywise in the not too distant future and hoping it's not too late.
Thankyou for your support and concern, so very much appreciated,
Be in touch

[dshobbies]

Ouch! Whatever happened to first do no harm?

What surgery(s) is suggested to remedy this situation and what are your chances for pain relief?

Have you showed this to the doctor who did this?

Here's hoping you find the relief you need, Dale

[eternaloptimist1]

Hi Dale
Can't believe these pedicle screws were put in under "x-ray guidance".....don't these surgeons work out the measurements first?
Think I'll research the Zimmer site and see what they have to say. Fat lot of good it'll do me now though.
I haven't yet found out the full implications of the placement of these screws re the mediastinal / retroperitoneal areas.
Am terrified quite frankly, whether they are able to remove them without further damage or whether they have to remain in situ.
A real horror story.
Be in touch