Thought I should say "Hello"!! (long ~ sorry!)

[Lyndsay]

Hi everyone

I thought it was about time I said "hello" on this forum! I've been reading it for a few months now & recognise a few of you from the other forums. What seems to be good on here is the friendly free speech & not suddenly having posts locked, censored or deleted ~ why some people feel the need to do this I have no idea!

I've long wondered about posting on here as many of you know me from the other lists & I sometimes feel you'll get fed up with me posting!! I've completed my signature as best I can which is maybe depressing reading but hey, I can't change the facts!

I'm now 7 months post L5/S1 ADR (Prodisc) & almost regretting having the surgery. I've been trying to organise my 6 month check since the beginning of May but have now given up any hope of that happening. I keep being told the paperwork is being sent off or faxed over (I have my xrays locally as I can't/don't want to travel back down to London ~ did it for first check, BIG mistake!). Anyway, it wasn't a problem to have local xrays & then a phone consult for my previous check so can't see why it should have been this time. My only thoughts are that as everything has gone wrong, I've been pretty much left to get on with things myself. I'm now arranging an appointment with a Neurosurgeon a bit further north from me who specialises in the spine as I'm hoping that he will be able to understand my problems better.

At my last check (3 1/2 months) I gave my concerns to my consultant but they were dismissed & I was told that maybe CBT would help (like talking about it will take the pain away!) & we would review again at 6 months. When my xrays arrived back to me, inside was the Radiographers report that said although the disc was looking ok, there was now exaggerated lordosis (my ADR surgeon never told me this!). I spoke with my physio & we compared all of my xrays & it is quite obvious how much has changed in my spine. I have since been working hard with my physio (who is wonderful!) on not just the usual core stability but the deeper tummy muscles to try to help pull the lordosis back at least some but if anything it seems to be getting worse. I've worked my way through all of the things that are available to help me regards PT but have now hit a dead end. My Physio & GP are both now quite concerned at how much my spine seems to have deteriorated since my ADR & it was both of them who strongly recommended getting a second opinion.

I'm off to see the Pain Specialist tomorrow who has been really quite good but is also understandably concerned in my deterioration. I'm not sure what to expect from tomorrows consult other than to review how things are going but at least he wants to be kept in the loop of things & his input has been a great help to my GP.

Even though things have gone from bad to worse, I really, honestly do try to stay positive although some days it is difficult. I am the proud owner of 5 Border Collies & they are the light's of my life & give me a purpose to get better. I am guilty of having overdone things with them but I have through experience, learnt to pace myself a lot better & listen to my body more.

I have a lot going on in my life right now, I'm going through a divorce (& fighting to keep my insurance), my house is about to go up for sale so I will be looking for a new home though I will only be able to rent & although I now have a wonderful new partner, for the first time, I'm starting to feel a little overwhelmed by everything. Some of it is frustration at having lost so much of my life, ie, not being able to do the house work save the washing up, not being able to do the decorating that needs doing, the gardening etc etc but the main thing is the frustration at the constant pain. Don't get me wrong, I don't lie around wallowing but I don't think I'd be normal if I didn't feel at least a little fed up now & again!

Well I think that's me!! I do want to ask on here about anyone else that has had problems post op, in particular, Arachnoiditis but not sure if I should start a new thread? If so then please someone, let me know.

All the best

[rosedee]

Hi Lyndsay,

It's good to "hear" you on this forum too. (The lack of censorship is a big advantage here!!) I'm sorry that your recovery from surgery has been so problematic - it's an awful position to be regretting spine surgery. I think, sadly, too many specialists lose interest when our recoveries don't follow predictable patterns and we become viewed as the "bad patient".

You've obviously got to the point of needing more opinions and given my recent experiences in Germany, I would highly recommend you think seriously about trying to arrange to go there - I'm more than happy to give you any info I can from my trip that would make it easier for you. Dr Baumbach is a Neurologist, rather than a Neurosurgeon, and I think this makes his evaluation particularly useful.

Best wishes to you,
rosedee

[Lyndsay]

Thanks Rosedee & also for your PM, I may take you up on the offer of a call sometime soon, thank you

It was suggested I get a second opinion 2-3 months ago but I considered it too soon although it had crossed my mind. I did consider going to The London Spine Clinic but to be honest, getting to & across London for me is a nightmare. I then had a look at the list of UK surgeons & found the name of this Neurosurgeon in Leeds who specialises in the spine & also does ADR both cervical & lumber. I then found someone who'd seen him & gave a glowing report. As it's a lot closer to home, easier to get to (plus my partner only lives 35 mins from there) I've made the decision to go & see him.

If BUPA would pay or I had the money through from the house sale & divorce settlement, I would seriously consider going over to see Dr Baumbach as from what I've read he sounds wonderful! However for now I can't afford it as I'm on Disability.

I have previously seen a Professor of Neurology but to be honest he was a bit of a waste of time as other than various diagnosis' & a recommendation to see a Spine Surgeon, he didn't know what to do with me! I had a battery of tests including a totally bodged Lumber Puncture that put me in a wheelchair for several weeks, told me my back had had it but to see a Spine Surgeon, then he told me I had Benign RR/MS along with Fibro & some CFS!! It was then a "good-bye" unless you feel the need to see me again! Hence, as much as I've felt the need at times I've never returned!

I'm going to ask the Pain Specialist tomorrow about trying one of the nerve meds to see if that may help with the crawling & burning sensations, the painful numbness etc. I've not wanted to try these before because of not wanting to gain the weight but I don't think I can continue to live in this much pain for much longer.

Thanks again for your reply & hopefully chat soon

[dshobbies]

Lyndsay,

I am very sorry for your pain and what is perceived as a failed surgery. I too have heard only great things about Dr. Baumbach but if you can't afford to go see him, it's pretty much a mute point. I've also heard about how the UK health system gives up on patients when their pain is unspecific. I'm not trying to tell you our health care system is any better and I couldn't tell you which one is worse. I suppose if you have a serious problem it really doesn't matter!

So what to do now? Mark... does Dr. Baumbach ever go to the UK for consultations?

Other than that but regardless, my thoughts are with you. I wish you the best, Dale

[Lyndsay]

Thank you Dale

This morning I've been to see the Pain Specialist & he really is lovely & very understanding, although I did tell him he was cruel with his exam & what followed lol!!

It was typical that this morning things were a lot more settled though by no means perfect. I explained to him all of my new symptoms & concerns & he feels I had a particularly bad flare last week (not sure I've posted about that but it was horrible & had me screaming like a banshee!). Anyway, after chatting through different options I agreed on a couple of injections which consisted of local anaesthetic & steroids. The sites injected were the; Trochanteric Bursa & the Paraspinous Muscle Infiltrations, both on the right side. I can tell you, they hurt!! The Dr & the nurse assisting were lovely The nurse said she'd not seen such a muscle spasm or heard such a pop from the needle coming out

I now have to rest up & return on 26/07 for a review. We also chatted about the various nerve meds available & depending on the outcome of the injections will discuss it some more next month.

Thanks again for your replies

[ans]

Hi L. and best of luck during this difficult time. If someone suggested CBT for my pain, I'd probably belt him.

You be well - ans

[Maria]

Lyndsay,
I wish that your results had been far different and I hope that with some treatment and time you will have lessening of symptoms/loss altogether.

Post my 2nd discectomy (L4 percutaneous) I had such severe gnawing burning pain that went from my waist thru my buttocks, to quads, back of legs, thru calves, laterally on both legs (bilat pain equal pretty much) to soles of feet.

This pain lasted 5 years but with Elavil was muted to some degree and then by 5th year just couldn't even take 10mg of Elavil/day w/o feeling so sleepy and realized the burning had pretty much subsided except when trying to exercise/walk and so forth.

Back in '98 I started on Neurontin for residual burning pain, and in 2001 started with lumbar ESIs thru 2006 with great results (plus Methadone 5mg bid).

Now the most I've walked at one time was 6 plus miles. Sure I felt crumped once returning home and had a great old backache but only upon not moving versus being mobile. Rather my feet and my neck were killing me! Would you believe the next day my back didn't even hurt me?

There is hope~ just keep thinking positively and take it day by day. Glad to hear the PM's office is really active with trying to localize and treat the pain and that the doc and staff are nice!

And Welcome Back!!!