Cervical now was a old past lumbar sufferer

[cavalier]

Dale I am sorry TOS means Thoracic Outlet Syndrome - a big name for the fact that everyone has a Thoracic Outlet this is what carries the bloos flow & nerve pathways from the cartod artery down into the arms & chest area. This outlet can get scar tissue or compressed over time - HOWEVER in my case I am one of the rare people who have a EXTRA rib a Cervical rib that only one percent of the worlds population has & this falls in this pathway - so i am MORE crowded than most people & over time - this always tends to cause problems with nerve & compression to the arteries which is what this is doing to me now - I have this on both sides of my spine & it requires this being taken out in 2 different operations. The doc's who do this are typically Thoracic Vascular surgeons but due to the fact that this is not a common surgery - you want a doc who does alot of these under their belt. As alot of complications etc. if you dont have a good one. i have so far alot of pre work ups that show i have the arteries being compressed - i have a couple more tests to do & i want them done ASAP as I have a risk for a clot & anerysm spelling sorry i am tired. So depending on what i find out i will put the one that has the most danger if left untouched 1st - but i am trying to weed thru this & I am talking to doc's around the country on this. Memphis does not have doc's who do much of these.
I have a TOS doc who does alot of these calling me himself this week which is very nice & I had another TOS doc call me last week so far it looks like yes I have this for sure & that this extra rib has to come out - I actually would rather have the ADR Cervical neck surgery as this is a major deal & once recovered have to undergo the other side as both are affected. Once I get all of the final tests & doc's weighed in I will confer with Dr Fenk-Mayer & lay this in front of the doc's & make decisions. I do know when it comes to my neck who i want Dr B. - however with the TOS I am going thru finding who the best are etc. I only want a doc like Dr B & Fenk-Mayer who are willing to address ?'s
Thanks - & all the best to you Jill

[cavalier]

Oh I forgot to mention it causes 4th & 5th digitis numbness & tingling & circulation issues & wrist & hand weakness & neck pain & shoulder pain arm pain so it iis confusing as it can overlap with someone who has neck issues & I have both - so trying to do as much diagnostics to get some guess as to the %'s but not alot of dooc's here know much about it - so thus the need for travel & those who do know the most are the better ones to see.
Jill

[dshobbies]

Jill,

I knew this didn't sound good! I am sorry you have to deal with this on top of your other problems. How far apart are these surgeries? Is it the normal 6 weeks and you're good to go or a more prolonged healing process? After these extra ribs are removed will your anatomy be considered 'normal'? In other words, is this TOS surgery a complete fix or will there always be related health problems?

And then your cervical surgery. Hopefully, after this YEAR of surgeries, you'll feel much better and can get on with the rest of your life.

Please keep us posted, Dale

[cavalier]

LOL - normal - is subjective. Much of this depends on the technique of the surgeon & what I am finding is the techniques for the VARY quite a bit - why I dont know. So that is the trick. Yes about 6 wk's but not sure yet how long before they will do the other side much of this is what I am looking for the Artery studies to tell us more on since both hands are affected. Then the neck is probably what will happen but I am not setting anything in stone til I see the artery studies I need to know they tie into the TOS otherwise I wont be so sure on moving forward.

Thanks Dale.

[cavalier]

Once again as in the past with my lumbar - USA doc's are saying either do no surgery for the neck & do TOS surgery instead, which is a rather complicated & risky surgery or do a 2 level fusion for the neck. Stenum & Dr B both agree in saying ADR 2 level possibly 3 TBD by discogram. I would prefer to have just one USA doc who has seen me in person to agree.
The spine doc's who say fusion are scared due to loss of Lordosis which is normal, when you have loss of disc height intergrity of the discs & also the facets which also wont be perfect if you have the above. You need the height to be restored.
Stenum added that C6/7 is herniated which is not noted on my MRI report which is a important note to me as it would mean the nerve root C8 below would be getting irritated which is what I had wondered about - as that would explain the TRUE TOS arm issues & shoulders & scalanes. Rather than what one USA Spine doc said was the TOS was the issue. The C5/6 disc is prolasped also not mentioned on my MRI - but it all MAKES sense as you cant have moderate stenosis & osteophytes taking place unless you have disc weakened or being lost - I know this from my lumbar - so this wont be going away - since I am narrowed to 7,8.9 mm's & normal foramen is 15 to 20 mm's i will have to address this - I am getting the subclavical axillary arteries & a US Venous Doppler in various positions done this week - so I can be sure the TOS which i believe is a 2ndary that the above doc's are right, has not caused a clot or artery compression as i have 2 arteries compressed in my L hand I just need to be assured this issue is not up higher so i am basically tracing the origins of this. The Artery doc had me do a simple test - one that should be done & it shows definitely there is a issue so tracing this is smart - & something I have wanted to have done - once i have this I can know if i can just do my neck or if i need a arterial repairs 1st.
I am going to try to avoid doing any TOS surgery - but want as i say to be sure I dont need any emergent artery repairs. I think that is prudent & then I can proceed. All about having a plan & hoping you can then put it into motion. One that needs some thought to it based on common sense & understanding of anatomy and i believe in my heart that some of the doc's also understand this as well. My GP pulled out his thick book with the Dermatome map to agree in looking in my saying I feel the C8 nerve roots are being irritated by the C6/7 above & causing true TOS issues due to the time this has gone on. Rather than TOS as a stand alone. He has nothing to gain by giving his input as he does neither surgery but he drew his circles for my MM's as he was thinking it thru - he said the neck needs addressing you are at risk for more damage if you wait - he said TOS surgery is hard & difficult & alot of complications and you still have the neck - he feels as long as we check the arteries out well - the issue is coming from C6/7 irritating the nerve root that is below it. I am willing to bet the farm & am putting my money literally & my life on it. But i need to feel i have addressed the arteries so we dont have something hit me out of left field.
Jill

[cavalier]

Just got back home from seeing a doc in St Louis very tired, I am seeing doc’s for a injury I did a year ago that didn’t heal quite right. Dr T thinks I tore the pec minor & maybe the scalenes too when I broke my rib based on how I described the vast areas of swelling I had - which I thought was pretty far for the rib to affect my shoulder line etc. so I tend to agree. He said was no way for them to see that on imaging. Once those healed they were tighter & thicker & more scarred so causing issues now & over time getting worse not better.

I had some diagnostics done there by injection with lidocaine into my chest wall muscles to be sure which one is causing the issue. Long story. But showed positively this is causing the issue. My back of my neck got better & the headache was gone for this time period. Not supposed to give long term relief but for determining the source. Scalene & Pec minor in the left side only even though I have both sides due to worry of injury to the frenic nerve - they do only your worst 1st. I met the PT guy there too - think his name was Mark but not totally sure have his card.

If I proceed with surgery 5 days in the hosp in St Louis long ways from my home & dogs & the another 5 days in a hotel close by get the drain out on the 7th day - complications or things can come up & he said wants me in the area so he can address this as he says they have seen it all & doc’s down here or in places where they don’t have a TOS expert - they can be floundering in trying to help but puts you at more risk. Hub would be there for the 1st couple of days but cant be gone for the whole 10 days & I am worried about my dogs a long time to be gone. Don’t have any kids who live here any more so need to talk to them I don’t want to board my dogs - Axel really mourned & was not happy when I was gone. He was really happy to see me they all were but he & then Augie were the happiest - but especially Axel he kept hugging me putting his arms around me.

I would love to have him in the hotel with me just keep one of the dogs the one hardest hit by my absence be so healing for me too -so a lot to try to piece together. This is only doing my worst side my left 1st hoping I can manage for my right to not need the surgery there. His odds are 87 % I will be better & only 1% chance made worse. Doc in Knxvl, Tn actually a tad further from us here than St Louis, who does a lot of these would have me in the hosp for 2 to 3 days & can travel someone else driving on the 3rd day home, BUT his odds are less than Dr T's. Deal is if I got into trouble here coming home sooner, I am even further away distance wise from him then St Louis. I told Dr T. I still wanted to talk to him. I am so exhausted to have made the drive but said I had too -

I was to see that doc today in Knoxvl but a call came in on Thurs that he was called out of town for a personal family emergency. I sort of want to see him just to be sure he does not feel I could not be helped by conservative measures. As I dont want to wonder or if anything would be different. But at any rate that got delayed for now. His stats are not as high as Dr T's - Dr T said only 1 % chance I would be made worse 87% odds I would be better. This other doc in Knoxvl has not been doing them as long but is a TOS expert - he said 80% chance improved,15% odds i would be WORSE & 5% chance no better. More to see if the technique & surgery would be the same offering or what.



I still wonder if Prolotherapy could not be injected into those 2 muscles? I am going to call around to one in Nashvl to find out - it could be due to that being so close to the frenal nerve that controls breathing for the lungs - they may not want too. The injections were done by guided imaging Cant think how to spell - floroscopy. The doc in St Louis is VERY good & I have no doubt is VERY vested in TOS in helping people - he introduced me to one patient who had surgery once - did VERY well got back to work working 12 hr’s a day lifting patients she is a nurse & sole provider for her kids - she got scar tissue & Dr T had to go back in to relieve that he reused the same scar area I saw it - to go back in again, she is now one month out from clearing out the scar tissue & is doing well. They tried other things 1st she said for about 6 mo’s from having to re-operate but she said I got to talk to her privately he is VERY good & the only doc she would have touch her. He gave me his direct cell # when we left I almost fell on the floor.

The one doc here does not do anything to the muscles only removes the rib but I do know AFTER these 2 lidocaine blocks my problems are in these muscles contracting down on my nerves so his operation here would not completely resolve my issue. Dr T feels I tore these muscles when I broke my one rib & when they healed got thicker from the tears & scarred causing the nerve compression now I asked if only those 2 muscles could be cared for & leave the ribs but he feels it may not do the complete job but right now they are still in there - but it only sort of froze the feeling of the compression right now, only temporary but def. showed this as being the source of my trouble. They can do Botox injections that give about 3 mo’s relief but not a permanent fix & each time takes more to do the job.



This doc in St Louis has done a Cardinal’s coach who pitches balls to the players is back doing this same job again, a Tiger’s ball player & a ballerina whose career was ruined all had this TOS & are back at their jobs. Plus others. I also met someone who had to have her surgery redone in the sense that she got scar tissue - so I felt he was not withholding anything & left us alone to talk. That is pretty darn good in my book - she said she got complete relief but she went back to working FT doing 12 hr's a day & is a nurse lifting patients is a sole provider so felt she needed to do some catch up she then ran into trouble some time after that - that is the thing is feeling good I have already read any of us must still take it slow & easy - overdoing can be a bad thing. BUT the good news is after he tried some conservative means 1st to see if it would help her he then opened up & found the scar tissue - she would have only gotten worse & no better if she had a doc who ignored this. I saw the scar amazing he was able to go back in on the same scar she had - looked pretty darn good for only being one month out from having this scar tissue removed. She could not say anything but good words for how he cares for his patients. For me the one of the hurdles is being away from home for 10 days - that is a long time. I get why he likes to play it safe if one gets into trouble at a remote place he is not as accessible for them as having them stay in the area. Overall a good visit, I told them to be working on the insurance to see what they say as I was told this could take a bit to get approved. I have to hope that I will be doing the right thing. The injections were good confirmation. In the meantime I figure ask about Prolotherapy if nothing else I could do the neck muscles & the outer shoulder muscles to try to help those. I still hate the idea of loosing those 2 muscles and 2 ribs so I must be sure I have looked at all options. He said the operation is hard & slow will feel like I got hit by a mac truck. I have no doubt on that score.

I just need to be sure one thing does not lead to another as that is how I got in this spot to begin with my simple break was more than just a simple break it led to other issues especially as nothing was done to address them for some time.

At any rate, this is long enuf -

Jill

[cavalier]

Was on the fence about seeing another doc but felt something nagging still. It was simply that I felt we were missing something that until i felt this one piece was covered. My concern was my arteries. Had a apptmt but it got cancelled due to a ER on Doc's part - his sectry called me on Monday & asked I could make it there on Tues afternoon to see Dr Cassada - I took the apptmt.
Some of you may know & some of you do not but life has been turned upside down for me (again) after an accident over a year ago now. This event was the catalyst for continuing escalating problems. I had intermittent issues for TOS before this, but nothing like this. A year+ ago broke a rib over my heart - after colliding with the top of a fence. (long story) Had a lot of swelling up by my neck chest & shoulder much higher, than where I broke the rib at. Had hoped this would go away but it didn’t & over time a whole pathology has come about which has gotten only worse. This started me in seeing doc’s to try to get to the bottom of this whole mess for about 9 mo’s now with alot of conficting info & things to sort thru.

I found out one more piece of info making this trip to Knoxv’l. Am dead tired, but I have confirmation & at peace on what I must do now - scared sure, but I myself feel I no longer have the luxury of choice in the matter. Unless i find out a miracle way to remove this unstable cervical rib from my nerves & arteries.

Have my L.cervical rib moving when I move, & can feel it at times doing so, This extra rib isnt found in most people - most have only a 1st rib. I have felt it move - when my puppy dog stood on my chest which I cant tolerate for even a sec. He loves to do that and then put his paws around me for a hug but I have to avoid it anymore. One way I knew it was worse was I almost fainted it is so bad. Pain & pressure is mounting there. Was worried if it this extra rib was moving - yes it is & downwards. Not stable anymore.It is laying on & directly pressing on my main arteries on that side of base of my neck into the shoulder. One test that showed my artery as being clear with the rib right next to it,but the test was done with my arm by my side - problem is the cervical bone is moving around when I move & so is compressing. If I lift up my arm or hold it outwards - which the Doc in Knoxville said if the doc’s here knew what they were doing would have done the test with my arm in different positions. Have had massage & rough acupressure to that area for the last month, but the pressure has been greater I have wondered if this or coincidence. He said I am lucky I am alive. He's the FIRST doc to notice this as I stood in front of him & without my having to say a word, he said I can see your artery pulsing due to the cervical rib that has shifted downwards & is out of joint - it is resting directly on that artery.He lightly could feel it moving the rib outwards & down. He said whether he does it or someone else this rib MUST come out & NO LATER than one month take aspirin every day, high risk of a aneurysm - which I was worried about since last July, but the test gave me a false info. When I saw the TOS doc in St Louis he said only Neurological & risk of perm nerve damage but it was looking at the one study done by my side, which he too said should be with the arm up. Some doc’s rely on tests too much - they are not always accurate. Maybe it was not as apparent that day it is intermittent. Any doc could be wrong, but afterwards I cried as I feel he finally nailed EVERYTHING in being prepared for dealing with an aneurysm when he goes in. He noticed the right side too. We both agree the left is immediate 1st priority. He said the right has cartilage where the Cervical rib would be that is still taking up the space so compression there too but not the degree of swelling I have on my left.

He got that when I hit the fence, my arms hyperabducted backwards I said yes they did. He agrees with St Louis Doc that I tore the 2 muscle groups. Thinks I can leave the 1st rib, unlike ST Louis who wanted to remove both ribs. But both muscle groups will need to come out so both agree there he said if Ieave them & cant get the adhesions away by manipluation I then risk a 2nd surgery there.

The St Louis Doc has done 100 of these surgeries - Dr Cassada has done over 500 of these, he has lost count now. He says about a hr & ½ for the surgery be in about 3 days in the hosp & then another 3 to 4 more days there in the area b/4 traveling back. IF I am doing OK & the X ray looks good, can them ride by car going the 7 1/2 hr’s home we loose an hour in the time change. He was back patient himself & perhaps that is why he said doc's in general dont do enough feeling around before they make decisions.

If risk of aneurysm, whihc I e then no way around it as I had read up on this to know then surgerbelieve is real, so I agree with his findings then this must be considered. The longer I wait the riskier it is. He is on vac. next week but his surgery schedule is already booked til the 19th of Aug. I called home afterwards - we both felt do it on the 19th - Called them back & booked the 19th for the surgery. I knew if Arterial I had to put urgency to this. He said this has gone on for too long & you really need to do this in a month’s time at the latest whether it is him or someone else. He said think about it, but he said dont ignore this. Seen 3 TOS Specialist doc’s now, & phne with Dr Sanders, besides a few other specialities & ALL agree I need TOS surgery. I cant change this compression of the arteries & nerves with the bone laying on this. He said PT nothing can change that. Has to come out but so will these 2 muscles groups too (did blocks to both muscle groups & defintely affected.) I have to do my right side affected too so will see but once I get recovered with my left, unless I get lucky & that abates. If I can use my R less maybe by getting my L back. This doc I feel got all of the details down & drew everything out but also really looked at me in being even more observant, has a quick keen eye. Felt he picked up a bit more than the last other doc’s visit without having to spend as much time. Feel it indicates being very sharp & nimble on his feet to have such a good grasp, that others had yet to pick up. I feel this is the one not sure exactly why but I originally felt maybe my doc. Each doc I gleaned a bit, but also put in a lot of learning & living with this as well, told me even more, so when this guy nailed it WITHOUT my having to tell him & he got the whole picture - I finally felt he has a handle on ALL of it. Cried when I called to Hub to tell him - as I have felt this for so long now - had said all along my arteries are at risk it is the one right up by my neck. Had a conclusive test that showed 2 arteries in my hands as being blocked, I kept saying before this you need to trace this up higher source is up by my neck. Bawled my eyes out as I had felt my Mom kicking my butt trying to warn me not to ignore this, that this was emergent & to not have history repeat itself. She didn’t want this to happen to me l felt, as we think (she died 4 yr’s older than I am now) of a aneursym. You see doc’s & get passed around for a bit - but I c/n shake this. I have come this far & am still here

Want to let you know I CANT use either arm for a min. of 3 wk’s after the surgery & very strict - which matches what I read in order to keep down the risk of scar tissue as when you use your right arm it still moves muscles around on your left. The St Louis doc was going to have me use my left arm lightly after the surgery. Am aware of one side makes movement for the other side - with both sides being messed up, I can feel that as opposed to when things were normal. 3 wk’s I cant use e-ml or do any typing and for now I am just going to take it easy. For those 3 wk’s minimum post-op I cant do any housework or even make my own meals nothing ! Not even using my R. hand - That’s going to be HARD. Last July I showed Hub my artery jumping & saying this is just not right - my artery is trapped I said this is messing up my BP & yet when I tried to tell Doc’s they d/n listen. This is not a common pathology & most doc’s have no idea what is going on. These doc's can read a Cervical MRI but the spine doc's dont seem to know as much about TOS yet both can affect the neck. It takes a good deal of sorting out when you have abnormal Cerivcal MRI but will address the most pressing 1st. You need a good Vascular Cardio Thoracic Doc, one who knows Thoracic Outlet Syndrome as well. This doc said for sure the compressed artery affects the sympathetic system & explained it all, but basically I already had the idea.I had kept saying mechanically this is why my BP is up down & normal & is unregulated & nothing med’s wise could control it.

Angels have been busy working OT to keep me here.

Now it is time for me to do my part to see if I can have a bit more time here still. J Got no sleep prior to leaving & up in Knoxville,deep pain from the arteries in to my hands just wont let me sleep. Could not use my left hand at all in driving & my right was white hurts like crazy. Don’t know how I did it. Hub had just taken off & did all of the driving last week for ST Louis. & needed to get caught up on work, which I need the insurance for. Insurance does not like to pay for this surgery it is expensive & risky so say a prayer that goes off without any delays as I need to have this done unfortunately.

At high risk for an aneurysm and needs to have surgery to remove a rib that is pressing against an artery ASAP. Of course, then tell me the first date they can get her in for this surgery is Wednesday August 19th. Will be in the hospital through Friday or Saturday, and then has to stay in the Knoxville area for a few days after that.

Once released, be back at home just watching the dust bunnies collect. It will be hard doing nothing.