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?? Assessing Not To Do Surgeries C-6/7-T-1/2

JoydancerJJoydancer Posts: 463
edited 06/11/2012 - 8:46 AM in Neck Pain: Cervical
Need Some Input re: My Situation/Decision:
62 Year Old Woman assessing inability to undergo 2 complex surgeries last 2 levels in c-spine and 2 levels into t-spine; fusing all c-spine levels; exception atlas,C-2/3 deformed severe scoliosis; only partial movement.

Symptoms: Advanced neuropathy left arm/hand/fingers chronic nerve spasms with dysfunction and loss of strength, movement, hand/fingers.

Diagnositics: MRI,CT,Flexion X-Rays

EMG severe compression ulnar and median nerve at wrist; moderate compression ulnar nerve elbow.

2005 MRI C-6/7 advanced DDD Surgery assessment: posterior decompression C-6/7 and T-1/2
Two surgeon assessments; confirmed same; exception Surgeon #2 advised to "wait until symptoms are constant of intolerable pain or radiculopathy...because of complex anatomy change of bridge, only done absolutely necessary, do interventional treatments and hope to never have to get to that phase.

2005 Decision: No surgery; non-interventional treatments; to by-pass having surgery.

2010 MRI C-6/7 severe advanced DDD now collapsed onto T-1/2; bi-lateral nerve compression nerve roots in front c-spine, deformed thecal sac. Surgery assessment: anterior decompression of C-6/7 plates/screws fixation to T-1/2 possibly T-2/3. Set-up for pre-surgery eval on larygeal status; high risk for damage to voice box and swallowing ligaments = always much higher with second anterior surgery. 60/40 chance posterior surgery required to successfully fuse (anterior fusion at those levels have difficulty with fusion)

Surgeon re-assessed and advises week later: No Surgery - "re-assessed scans and my case determined the prognosis for successful surgery to reverse progressive symptoms in arms and hands is not good..." (wrist drop/ thumb failure/ finger spread failure)"and taking into account high risk for compromising laryngeal damage..determined you would not be a good candidate for surgery" adding "get a second assessment if you like..good idea, but as far as I am concerned I believe doing the surgery at this time is not a good idea"

Current status: In-hold pattern for out-of-state neurology and neurosurgeon assessment 2nd opinion; long wait Nov. 11 (major univ. best of the best in US)

Current symptoms: Chronic nerve spasms two separate episodes; ulnar/median nerves EMG confirmed; resulting in loss of function three fingers, thumb, tremendous change in strength, movement and grip, rendering hand usless for most functions.

My assessment - ability to undergo surgeries & recovery: High anxiety with low coping skills for intense levels of pain now; sensitive to heavy duty pain medications; induce depression/anxiety levels already compromised with past recovery major MVA in t-bone broadside collision; low endurance and coping ability to undergo complex long (painful) recovery of two surgeries required; total duration of recovery 14-16 months; no significant other or family member to assist me; live alone.

Additional Perspectives: Spine-Health forum past 3 months, more people having very mixed results; higher incidence of complications and coping intense (painful) recovery with high incidence in short term and long-term return of symptoms and hardware complications/problems post-surgery.

First ACDF 3/4/5/6 15 years ago; 45 yrs of age; high level of pain in 9 months of recovery; successful fusion and reversal of bone spurs encroachment into spinal cord (whole left side of body radiculopathy). 8 yrs later symptomatic radiculopathy MVA rear-end; 15 rs. later MVA broadside t-bone collision.

My own assessment:
Experienced anterior surgery 15 yrs ago at 45 yrs age; difficult month recovery; no significant other and lived alone. Have had other surgeries within last 5 yrs. (less major) = my psyche No More Surgeries!

Prognosis/Risk: Not good ! (top surgeon, highly experienced cervical / thoracic spine head of dept. major univ.)

Prognosis to reverse symptoms = Not Good
Damage to voice box/swallowing nerve/ligements = High Risk
Low success for fusion with anterior decompression procedure = 60/40
Probability of posterior surgery necessary or fusion & stability = High

<2 Difficult Surgeries = 16 months Recovery = Unlikely to Reverse Symtoms / Nerve Damage>

Seasoned-Spineys please offer your thoughts/opinion –

64million dollar question:
How and what factors should be considered...determining...

What is prognosis of no surgery intervention; living with neuropathy; spinal nerve compression; deformed thecal sac spinal cord and c-spine becoming more unstable in remaining years 15 years with restrictive semi-retired activity?

Thank you ~ appreciate your input.



  • Hi Janelle,

    I am a little confused do they want to do surgery or not. If you have a issue with the cord the risk of not doing surgery is far greater than the risk of surgery. Now if you have thecal sac compression it depends on how far into the thecal sac it is. The sac has three layers and it is very very strong. It all depends on if the thecal sac compression is deforming the cord.

    Now just so you know i have had a total now of 6 cervical surgeries. Four of them with the anterior approach. Three of them with the posterior approach. Now if you doing the math that equals 7 surgeries. But the last one was both a anterior and posterior approach. That approach was used to secure up my c-spine and stop the adjacent disc disease issue I am having sense it is happening to fast and I don't have a aged spine. By that I mean i have no bone spurs just sever herniations of the disc.

    I am not sure why they are telling you that the risk are so much higher with the multiple entries in the anterior approach. It was something that was never brought up as a additional risk. Now what was brought up as a higher risk is the amount of scar tissue I am building with that many entries. Risk to the cords can happen on any surgery. I did take a hit to my cords on the 5th surgery but some botox and all is good now. Going into the 6th surgery my surgeon had a ent in the OR with him.

    Multiple c-spine surgeries are becoming more common than you you think with the adjacent disc disease. Most surgeons always prefer the anterior approach as it is a much easier to get to the disc and do what they need to do. In addition believe it or not the risk are far less along with the recovery time. I mean I wish that multiple surgeries on the spine weren't common but I am seeing them more and more. So I am a bit confused why your surgeons are so concerned in this regard. I mean the risk of someone cords versus the risk of not walking is far less, if their is a cord issue. Is your surgeon possibly thinking that you would be better off served with conservative treatment. But if there is a stability issues which you kind of eluded to, to the best of my knowledge that is not worth the risk of letting someone stay unstable and what could happen. If I had to choose between walking or whispering the rest of my life I choose walking. I would think that most surgeons would agree. Which is why for me the risk was not a questions, because what was happening was going to lead me in far worse shape than loosing my vocal cords.

    Anyway I guess I am just a bit confused as to what they are thinking,
  • Tamtam,

    Appreciate your sharing your experience and perspective. This will probably be giving you yet more info with all I already posted - - alot, but here’s some clarification with the things you addressed and asked.

    Re: Surgery Off-Table "No Surgery at this time" OS
    < confused do they want to do surgery or not>

    Orthosurg OS#1 out-of-state main c-spine surgeon for 6 yrs and Orthosurg OS #2 close to home (both high-level skill with complex complex cervical spine conditions, disorders). Both surgeons collaborated on assessment. No Surgery "at this time" (April, 2010).

    OS#2 approach was non-interventional treatment: Nerve Block into Left/Right C-Spine Nerve Root 7/8; which resulted in toxic damage to branch nerves into left arm!

    Result: Severe progressive neuropathy with residual nerve damage and/or "double crush" entrapment arm/elbow, hand/wrist into fingers all dysfunctional. Atrophy, loss of movement,dexterity. Continuing severe flare-ups; progressive loss/damage hand & fingers.
    EMG June, 2010 confirms.

    Re: Next Assessment - 3rd Opinion NS appt.

    NS out-of-state best major univ. team in US complex cervical spine deformity/degenerative surgeries and neuropathy neuroscience evaluation.

    Review initial MRI CT Flex. X-Rays & intervention and stabilization surgery C-6/7 into T-1/2, high risk, prognosis, etc. + changes: "deformed thecal sac", facet arthosis and arthropathy previously fused C-5/6, kyphotic collapse C-6/7 onto T-1, and advanced current neuropathy in left arm nerve entrapment “double crush” and toxic damage to left nerve branch 7/8.

    Re: "High-Risk" 2nd Anterior Surgery (voice/swallowing ligaments and nerves compromise/damage)

    Both OS#1 and #2 agreed with high risk repeat surgery anterior to voice box and swallowing. OS#2 explained damage and level of risk not because of surgeon's skill/expertise, but patients anatomy, simple to complex of ligaments and nerves and overall integrity and endurance of contracture procedures.

    Re: Spinal Cord "deformed thecal sac"

    Got no definitive assessment. MRI CT scan reports no definitive assessment, nor OS's didn't address. Focus and limited time in appt. assessment / review was on C-6/7/8 neuro symptoms progressing, reviewing scans and seeing compressed space at nerve root junctions.

    Re: Multiple C-Spine Surgeries

    Wow, Tamtam that's ALOT - - you've sure had a journey!

    I'm thinking here's where we really hae to factor in our differences....my # of years with complex multiple disease; my complex severe S-scoliosis c-spine, malformed upper c-spine levels, deformity since birth; complex anatomy and multi-level degenerative processes, facet joints, discs degener, scoliosis changes - - makes it more complex and complicated in assessing for intervening DDD and complex considerations that have to be made...

    Complex spine and systemic disease / conditions advancing for past 52 yrs. in my 62 year old body!!! :)

    Tamtam, don’t know what age you are, if you deal with these compounding issues of whole body degen. disease, systemic neuro-muscular disease, and reactive nervous system over 20 yrs now, since I was 50.

    Wow! What a spine warrior = 7 cervical spine surgeries! :) That is truly exceptional -- have some been repeated second fix surgeries all done with hardware?

    My OS did bone implant knowing the complexity of my spine issues so advanced for my age, scoliosis load of only have 4 normal levels and going into progressive degeneration....thinking into the future of my spine and how hardware failures occur too often.

    Thanks for sharing your perspective on this, Tamtam. More to come...



  • HI Janelle

    You must be getting anxious waiting for that next consult. We've chatted and you know I can understand your frustration at the flip-flopping on surgery. This area that we share is just very difficult to work on.

    I know that the doctors mean well and want to fix the problem. I truly don't think the technology is there yet. I am sure they are as frustrated as we are. I'll be keeping my fingers crossed for you.
  • Hi, Kris,

    Flip-Flopping OS’s - - Yep you got that right!

    Surgery Needed then No Surgery !!

    And the reason he gave was run over and over in my mind, and he left it on my voice mail !
    After, 6 yrs with this OS monitoring advanced degeneration, kyphosis, facet arthropathy at C-6/7/8 through two mva's and conservative criteria of OS saying "should not do surgery till became absolutely necessary and thay would be more increase in neuropathy and/or intolerable pain". Well we appeared to be there not only nerve compression but DDD collapse of C-6/7 on T-1/2 !

    And before ENT eval he ordered to be done - - he reassessed & cancelled plan of surgery high risk of 2nd surgery for laryngeal compromise/damage and not good prognosis to reverse symtoms !

    I truly believe that is not the whole story - - really need full diagnostic assessment of everything that showed up on those scans: "deformed thecal sac", neural foraminal space changes on 3 levels, osteophytes showing up in 2 levels of previously surgically fused levels 3/4/5/6 reported in 2009 scans, but not in 2010! NS could probably want new updated ones it'll be 7 mos. old by the time my appt. arrives Nov. 11!

    Yes, this 3 month wait has been really stressful, caught in a Catch 22 with being on-hold with no real treatment for the destructive neuropathy in my nerves in my arm/hand/fingers, losing tremendous function of my hand and fingers -- it;s shocking and life-changing and the uncertainty of how much these nerves are damaged and if there is a surgery can't be nerve and muscle damage can't be reversed!

    Every nerve spasm episode 4-5 weeks duration is severe loss of function in a new way and with less aqnd less. EMG NCS Hanbd Surgeon Assessment - - surgery needed for elbow ulnar nerve compression, wrist for median nerve and thumb ligament failure!

    That surgery put on hold, for yes the Nov. 11 NS assessment since it's "double crush" of nerves, first crush being c-spine nerve root junctions, then second in the elbow/wrist and the source has to be fixed for successful outcome and saving my arm/hand !

    Re: C-Spine T-Spine junction surgery

    Kris, you saying

    From what I've researched and conversations I've had with OS, who is specialized in doing cervical spine surgeries only and patients coming all over the world for surgery, complex surgeries. The standard procedure accepted and used for over 12-15 years consistently using plates/screw fixation posterior surgery in most patients. Then with additional anterior fixation as well for those patients who do not fuse well or other pre-existing level commpromise with instability of additional levels or above/below levels previously surgically fused.

    C-Spine T-Spine in most cases is DDD and then trauma fractures. OS said they have not changed to hardware since using certain plates/screws sized for number of levels done for past 12 years. I got the impression they are not trying to improve on that from the explanation about that surgery changing, and him saying "the complexity of the surgery is forcing a bridge connecting two distinct and unique different areas of the spine, cervical and thoracic"...that factor can not be changed, it's about intrinsic anatomy!
    Also that’s the reason for the “very conservative approach to doing surgery” OS NS know from experience and peer cases reported of these surgeries, "to only do if severe enough conditions, that being neuropathy, myelopathy or trauma injury/fracture."

    All these issues make the uphill journey very interesting and challenging ! :) Oh, the genius of the design of our spine and a tough one to fix!

    Well, I surrender it all again!

    Have to catch up with you where you are with OS / NS surgery assessment - - how are things unfolding for you since both surgeon's assessments?

    Well listen - - time to let go of spiney talk :) and get myself to bed - - have a good weekend!


  • Janelle you know that what you are looking at is a very rare area to fix. As you said and I agree the technology doesn't seem to be there yet to do a cervo-thoracic juntion fusion with a great outcome.

    Our situations are almost identical, but you are a few years ahead of me. The doctors want to wait because the surgery could make things worse. So you wait and the deterioration gets worse and there comes a day when you have waited so long they are afraid that the surgery can;t help. But there are some doctors who want so badly to help you that they think they can make it work.

    Something occurred to me and maybe some of our medical community members would want to comment on this. I saw first hand when my mother in law was terminal in the hospital that the doctors were ruled by the legal dept of the hospital. Before they could do a certain procedure they had to get approval. I wonder if in both our cases the docs had to do this and that caused them to do a 180 on performing the surgery. Something to think about.

    November can't come soon enough. I feel like the on-deck batter. Can't wait to see what happens.
  • I have found that if a doc is qualified to do a unique procedure and the need for it has been established, approval is generally a formality. The big considerations are usually available O.R. time, staff and specialized equipment. Then of course insurance approval and ordering the hardware required if it is not something normally kept on hand. Also some biomedical companies require one of their representatives to be in the O.R. during surgery to insure that their device/s is installed properly.

    So on top of the need/risk assessment for the patient, there's also a fairly involved logistical process in getting this coordinated/approved.

  • Re: C-Spine and T-Spine junction surgery

    Re: Unique Procedure

    From my experience being under care of an OS for 8 yrs on this C-Spine and T-Spine junction surgery being required; my impression was that it was not "unique" procedure in that it is done, maybe not as frequently as the other common spine surgeries, but it is done regularly. Tried to find publications about case studies to find out just how regularly but haven't had any luck with that!

    "C" not sure if that is what you meant by unique in that it wasn't very established practiced procedure? Or that it wasn't done with much frequency?

    Re: Hardware Brackets - Same Past 10 Yrs

    From the OS’s that have been involved in my C-Spine assessment over the past 10 yrs all of them assessed same procedure: decompression; same approach: posterior (also anterior depending on conditions of patient/level going into the procedure) and same hardware: brackets and screws.

    I didn’t get the impression that the hardware was extremely unique and standard brackets which have been used for over 10 years (correction from my previous post, got my notes out of file, OS #1 surgeon said it was almost 10 yrs) that “we’ve been using the same hardware and basically same procedures since 10 yrs., nothing has changed”. Kris, did you get a different conversation with the surgeons you have had review your spine/case?

    Kris, I hope I didn’t confuse things by using the word “bridge” not in reference to hardware, but to the anatomy and describing the result of the procedure!

    Curious to learn more about the legal aspects...if it is really an issue on this “same procedure, same hardware, same approach” for last 10 years” (according to my OS Head of Dept. C-Spine complex surgeries only; top major univ medical hospital in US).

  • I can only go by my experience. I have been to two top (major univ head of ortho surgery) orthopedic spine surgeons and to three top (major hosp head of neuro surgery) neurosurgeons who specialize in spine in the past year. I have also seen an orthopedic surgeon who specializes in shoulders, a semi-retired neurosurgeon, neurologist and PM specialist in that same time. THey have all seen the same tests (8 MRI and 3 CT).

    I understand that opinions vary on when it is the right time to do surgery. But I have been told everything from "the radiologist has over read the films and there is nothing there" to "let's schedule surgery immediately".

    It is my belief that some of these doctors do not do surgery in the area of my injury. Ask anyone with a thoracic condition and they will agree. In most of these cases the doctor will say there is nothing to do. A few will refer you to someone who does.

    I have also had the situation where a top NYC surgeon (head of his own dept) wanted to operate. He showed us the problems on the films and ordered additional tests. He explained to me and my husband (I didn't imagine this) exactly what he would do, how he would do it and how long I would be hospitalized and recovering. Two weeks later his assistant called to say that I didn't need surgery...no further explanation was offered. It is my belief that in this case the hospital stepped in and said no to the procedure.

    Janelle every hospital has a risk assessment department. The actual name may vary slightly but their job is to protect the hospital from legal actions. In my MIL case they had to approve removing a breathing tube under a health care proxy. I would imagine that they also have to approve certain elective(lol like I want this) surgeries that doctors want to do.

    I don't know all the answers to this. I do know that I have been dismissed by some doctors while other doctors have insisted that surgery was warranted. It is so hard to know what to believe and what action to take. I only have one spine and don't want to make any more mistakes. I wish I had a crystal ball that would give me some answers and reassurance.

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