Previous Lumbar ADR, Now Dealing with Cervical Issues

[cavalier]

My story - good gravy is too long - but MVA 93 Broke pelvis 3 places hurt my low back & neck & L arm. A 2 level Fusion offered over the years -have abnormal discs L2 thru 5 L4L5 was the disc that was the bad boy but L3L4 was herinated & somewhat painful. I didn't want the continuing surgeries hung in there dunno how at times but lost use of legs moderate stenosis became severe after 10 yr's & walked holding onto chairrails and furniture had 1 to 2 min's to grab something or down I'd go. Still not wanting a 2 level fusion I had Lamatomey, facetomey & discectomey in 02. Legs walking again - but still bad back pain. Progressive Spondlyo starts up I begged to have them Xray to take a look - sure enuf - then every 3 mo's for 18 mo's it kept moving. Didnt' tell hubby til one year. Offered fusion again - i didn't want it as had to be 2 levels. Finally I keep sending MRI' & records on TIB"s waiting list for 9 mo's for one level ADR able to leave out L3L4 due to the ADR at L4L5 am # 3 on their waiting list but number had not moved no idea when. Cost would have been higher at TBI as they w/n give me the insur. discount that they would have accepted had my insur. paid.

I send to Dr Yue - he calls me says he feels Dr B. is my best bet as my case is not one he felt comfortable iwth due to the spondylo. Dr B. offers Dynesis only but that will only stabilize not help any pain - I cancel surgery as I feel either I need both or just ADR as I need the disc 1st to eliminate this high of pain. Dr B calls me & hearing the theory of restore what i had & this will return the stabilty & if not then at least we addreesed the disc pain & can see. He agrees it made some sense & says can i get there in one week -he will work me in as a Emergency- I say yes. After surgery - my legs had gotten bad again with the spondlyo & I wake up the old disc pain is gone & I have no numbness or pain in my legs - i stand up by my bed with IV's connected still. 3rd day AM I leave the hospital & walked 2 miles.

5yr's later I still have to be careful in positioning for my low back but doing still far better than before. Now the neck over time has gotten worse as this was my 3rd MVA - not my fault for them, but never got any long term coverage as I was told i would recover & be fine. Now I have C4 -C7 & a cyst on the C8 Nerve root sleeve. I also have TOS in my dominant hand & the doc's other than Dr B cant seem to figure it out once again. I have to have insur pay this time as I cant pay out again out of pocket have barely recovered from emptying our account the last time. Hubby would like to retire one day & we have 2 kids in college.

[cavalier]

Actual MRI findings for my neck & Thoracic Outlet Syndrome -
Disc heights are maintainted & No gross signal intensity abnormalities.
Have a MRI that shows Cervical Stenosis -

C3/4 has narrowing of AP canal to 8 MM's slight disc protrusion bilateral facet arthophy

Loss of Lordosis to the whole neck is shown & more levels involved

C4/5 Mild Spondylosis Moderate left facet arthopathy & left neural foraminal narrowing is mild.

C5/6 Moderate L. posterior disc osteophyte Bilaterally with central stenosis mild narrowing of AP canal to approx. 7 MM & bilateral uncovrtebral joint hypertrophy and fect arthropathy with moderate left and mild right neural forminal narrowing.

C6/7 Posterior Disc Ostephyte complex with mild central canal stenosis narrowing AP canal to Approx. 9 MM Mild L.neural forminal narrowing 2ndary to uncovertebral joint hypertrophy.

C7/T1 Probably Root Sleeve Cyst associated with Right C8 Nerve Root.

Have a abnormal Allen's test which is a Ultrasound of my Left hand in April that shows compromised blood flow to both Ulnar & Radial Arteries & a weak pulse,which confirms Thoracic Outlet Syndrome & Vascular surgeon concurs in his exam with the test. The question is if this is 2ndary to the neck or a separate issue. I would guess tied to the neck, as the neck is a long standing issue that has now gotten to this point in progression. I am not a doctor just live in this body. The hand started in 06 but came & went. Summer of 08 ongoing til now does not leave.

Had a VNG test by the ENT doctor which Confirmed the random dizzy spells - Evidence of Acute Peripheral Vestibulopathy Left R/O Peripheral Neuritis.
Had a EMG nothing other than Ulnar nerve is compromised the left arm at the elbow down. But fixing the ulnar nerve wont help the 2 main arteries in that arm that are also compressed. Did PT for my neck & arm but no help. I really think and would love to be wrong but having been thru back stenosis before PT etc wont do alot to change Osteophytes or Stenosis.
Only interested in conferring with a doc who is up on all latest techniques so I know he or she can pick from any tool that may serve me best, including ADR Cervical if they feel that is the best solution for me, who has some experience. The Memphis area is not enirchened with these types of doc's. I want to know whatever they may suggest is based on complete experience & not due to limitations. I have shoulder issues chest left side by the heart area I feel it is connected to all of this as it comes & goes. Arm pressure & the lack of good blood flow to my Dominant hand as well as huge headaches that med's are not controlling & some intermittent neck nerve feels like it is getting pinched off & on. I often feel as if someone is choking me on the sides of my neck & this does affect what I can eat now. Hands can get clumsy & left foot has given out a couple of times recently after brief sitting. Cant elevate my L arm and use of either hands in extending them exacberate both the hands & the neck. What is interesting is they call the stenosis mild but in my readings on the net including Dr B's site - a MD had Stenosis of 9 MM's & they called it severe by his Radiologist. I have 7, 8 & 9 but I also went & found normal canal is 15 to 20 so regardless I know I am a 1/3 of normal.

There has been no migration of my ADR which is holding the 2 offset spinal ends together at L4 L5. It is positioned still well Although I am having some low back pain down very low below this i think it maybe compensating for the neck - after all we are all connected. This neck got 2 whiplashes & then the side hit in 94 that broke my pelvis & hurt my low back at L4 L5 & made my neck weak so it helped move things a bit along. i was told my canal is small to begin with in my lumbar so i am guessing congentially my neck maybe as well. There is bad necks in my Mom now passed, my Aunt & my sister who had minor neck changes & had Thoracic Outlet Syndrome to her L. hand as well - she had the 1st rib removed but it did return when she tried to go back to her former work, she also did PT for her neck at this time. She had to go into a different line of work so to me I am not convinced the TOS is not in our case connected to the neck & use of the hands extending them & of course reaching up all make this worse. One theory from the one spine doc whose opinion is one i DO value Dr B's - is over time the muscles spasm & shorten the muscles & tend to compress the Arteries in this area due to the neck - yet other doc's also in spines dont think of this as being connected. I tend to think there has got to be cases like this before & what the typical findings are should give some clues. I found a similar case to mine not quite TOS but hand issues & he did ulnar nerve surgery & carpal tunnel both of which one NS suggested for me & got no relief - Mayo's then finally ran his 1st Cervical MRI after 20 yr's of him being passed off & doc's not getting this - he then went for the same 2 levels that are suggested for me - by Dr B. & he is finally fine.

I just feel i am in a pickle & with being told i am impinging on my myelin by the bone spurs etc & the arteries & today was told my muscle in one area of my left arm is going I dont think I have another 10 yr's to ride this out & have them sort this out. I am leaning towards getting a opinion from TBI. I am worried about expending alot of money now as i fear I may need it for the surgery - all of this takes me back to 04 & we are just getting on our feet from the last time we emptied our account. We have 2 sons good kids we are paying for both of their college & they both work FT & support themselves otherwise plus needing to think of Hubby being able to retire one day - all are reasons why whatever I do I feel we have to be sure we have at least some odds of this being the right surgery - not some doc saying well you can try taking out the rib. That is a major surgery & it is hard to recover from - not that ADR is to be taken lightly either. Sorry this is so long - it is not a straight forward case - however i dont think it should be that hard to sort it out - if someone really wanted too, but it is not a 5 minute consult either. I tend to think some just dont want to deal with anything but the simpler cases - they only want the best for results. I just cant believe we dont have anyone up to the task here in the USA ? Have called Dr Yue not seeing new patients til end of July. Sent info to Dr D in Calif - hopefully he will get back but I know from before he just never got around to it when i kept calling for my lumbar. I am sure they are swamped. Sent to another place overseas but looking for back up here in answers. Izasa's office just said more than one level no - for ADR, only a 2 level fusion. Looking at my MRI I just dont think that is a good idea i tend to think I would just let it all go then do that & endure more surgeries. Have heard that before too more than one level is a automatic no for ADR , even though out in Calif they say up to 3 if Doc deems necessary as FDA allows for compassionate.
Any other ideas? -are welcomed. thanks I have found no multiple ADR trials for Cervical right now going on.
Best to all - Jill

[KBear]

Jill, I second your idea to go to TBI for another opinion. Also, what about Dr. Bitan in NYC? Just some thoughts.

[cavalier]

K Bear - I appreciate your time thanks. I have thought about Bitan - from what i have heard he is doing typically a fusion at one level & ADR at the 2nd to avoid insurance issues. I have heard good things about him. I just dunno about it being a good idea for my neck as 4 levels have changes already, although I believe he would be honest in his opinion for me. TBI has done 2 level ADR's in the Cervical at times. I also have to consider costs in travelling as i fear i will need a chunk of change for the actual surgery itself.

Have thought about Rush too up in Chicago but I have to see what ball park costs at these places are if it is too high I cant afford them so trying to get that info - may help me to decide where - terrible that price has to enter into this. Jill

[Justin]

Jill,

In regard to your thoracic outlet syndrome (TOS), did the vascular surgeon recommend removal of the first rib?

I think Dr. Bertagnoli's assessment about muscles being shortened and compressing that area makes a lot of sense. It sounds like you have significant compression with a positive Allen's test among the other physical findings you listed.

Have you seen a few vascular surgeon's in regard to the TOS, or just the one you mentioned?

I wish you the very best, as you have a very complex situation. However, I know with your persistence that you will find the right treatment and relief from your pain. Stay strong.

[cavalier]

Justin - my Xray shows I have a actual Cervical rib on both sides - I am the one % of the population who has this - besides a 1st rib. For TOS is listed top 2 reasons are - as Dr Fenk- Mayer said the muscles shortening from the neck issues as you have written about but the 2nd reason for TOS is having a actual Cervical rib. I happen to hit both points. I have seen so far ONLY one Thoracic Vascular surgeon -who until he got my MRI of my neck knew for sure based on my U.S. test & his testing me in his office that I have TOS & he offered surgery but wanted to see a MRI & EMG 1st. Once he got the MRI he backed off & said have a SS fix my neck. I have both opinions so far, one SS saying it is the neck & another SS saying remove the rib & it will fix the TOS. The Vascular surgeon said there are no more tests to confirm whihc is the source of my pain & what %'s for each. But as I posted I found out today not so, I can have 2 injections to help rule this in or out - which would be a good thing I think before i do anything! I have called to get a 2nd Thoracic Vascular Surgeon's opinion & hope to be seen soon & get these injections going God willing. I still would want the Facets done too on my neck.
I think it is important for ANY of us to be sure that we have a good chance of addressing the issue for our discomfort & in this case also the Arteries I have a higher increase of a blood clot the longer this goes on & my Mom died of that one breaking loose only 4 yr's older than I am now so ... She too had unreg. HBP like i have since the beginning of this arm issue - so to me there is a family thang. She complained of her neck hurting but she never did much about it. I just hope to get these doc's moving. best - Jill

[cavalier]

I have been having bad circulation issues in my arms & even my legs. It is felt this is due tot he TOS & so I have talked to a TOS doc in Colorado this week - he has done over 2,000 TOS surgeries as sadly we dont have anyone who is good in doing this routinely here in town. He asked me about 1 1/2 hr;s of :/'s said I def. have the TOS. I also know from Dr's B & Fenk-Mayer & EVERY doc I have seen besides for my neck I have alot of facet changes & oesteophytes - the facets get this way I was told & it makes perfecr sense to me with arthritis etc is due to the loss of disc height she said simply put - this follows the loss of disc height. I am coming to realize I have need for BOTH TOS surgery & for the Neck surgery !

I saw a Arterial doc this week for my circulation as I could see purple blue spots on my arms & across my collar bone. He had me do one simple test & said i DEFINiTELY match the tests i had for arteries being compressed. So I have to do this week one test at the Hosptial a thoracic Aorta Chest CTA & a Carotid CTA & then later this coming week he will do at his office a L Chest & UE & Eval of the subclavical & Axillary artery. So dependfing on what his tests show will tell me which to put 1st the TOS surgery or the Cervical surgery. IF i have the TOS surgery it will be 2 surgeries one to remove the Extra Cervical rib that less than one percent of the world's population has but one side at a time they said too much risk of clasping a lung a risk with doing just one side at a time. Not a easy surgery to recover from I am told the ADR Cervical surgery woudl be easier. So hopefully i will know more this week which to put 1st. IF it is the TOS surgery the closest doc who gets people from 5 states around is 7 1/2 hr's away each way. He does 3 to 4 a wek & has done hundreds compared to doc's here with one a year done about 3 total.

I have relayed all of this to Dr Fenk-Mayer & will update once i get word on the arteries. IT aint fun but there is definitely 2 components to this but it is hard to assign a % to each. I found out one can do a Scalene Block & Percotralis Minor muscle blocks with Xylocaine but what I found out is hardly any one does these. Only one doc here in town who has & he missed twice before getting it right on the 3rd try - my doc says it is so crowded in there you can do significant damage if you miss. The Doc in Knoxville sometimes does them but not routinely. Colorado does them alot & often. I hope i can get some relief soon & things get rolling on which to do 1st. IF the arteries are at risk for a blood clot then I will have to consider the TOS 1st even if i still have a bad neck. But I will lay it in front of the doc's & they should tell me if that thinking is correct.

Meantime I am trying to keep positive even though i am getting impatient & frustrated but I have come to find out why the docs here in Memphis just dont know about this stuff for TOS. The Doc in Colorado says no doubt I have TOS. I keep hearing from about 5 doc's now that extra rib needs to come out.

I hate to let the neck go too long but hopefully it will all work out - it has too
Jill

[cavalier]

Once again as in the past with my lumbar - USA doc's are all over the map - 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. 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 USA Doc's so far are scared due to loss of Lordosis which is normal when you have loss of disc height & facets which also wont be perfect if you have the above.

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 Spine doc said was the TOS was the issue. The C5/6 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 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 atrteries & a US Venous Doppler in various postions done this week - so I can be sure the TOS which i believe is a 2ndary that the above doc's are right are not causing a clot or artery compression as i have 2 arteries compressed in my L hand - 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. My hope is I can address the neck 1st but need to cover my basis.
Jill

[Alastair]

I wonder if a "Posture " technique might help like the Alexander Technique? Posture is a BIG thing before and after surgery. Just a thought- - -gosh! You have been through a lot
Take care
Alastair

[cavalier]

Hey sweetie - the neck was the last part & at for a time the more minor part left over from my MVA in 94 - that took quite a impact did the break to the pelvis in 3 places, neck & lumbar & left arm. Just time. I DO agree posture is important. Nice to "hear" your voice.

Hope you are doing well.

Today is my B-day & I am coming up on my other B-day July5th 5 yr's since my one ADR Lumbar L4L5 surgery - may she have many more good years