Cervical Neck Problems Anyone?

[comfortzone]

Happy New Year everyone! I got the strangest phone call on New Years Day ... from my neurosurgeon in Baltimore telling me I need neck surgery on a voicemail! Anyway I've had a very complicated set of symptoms after knee replacements the end of 2008. What's been teased out thus far is that somehow some damage occured neurologically due to the surgery - perhaps from the spinal - or maybe even the general if they torqued my neck out of whack. Also they found small fiber neuropathy, an inherited connective tissue disorder, a replaced knee wasn't installed just right, orthostatic intolerance, a very labile blood pressure ... this kind of stuff.

When I went to see an EDS specialist to see if my EDS was the answer to my leg weakness feeling and other symptoms - I was turfed to a neurosurgeon even though I initially thought 'no' - I have a wonderful neurologist - why do I need a surgeon? And he felt my leg weakness was from my neck. He looked at my neck MRI and LS Spine MRI - and thought I had an unstable neck. I had a CT in Flexion and Extension after that appt. per the docs request - and happily it showed no instability at all. Just further verified what my MRI from 2009 showed. Severe foraminal stenosis on multiple levels and also at C4C5 an area where there could be some cord compression from osteophytes, herniated disk - the usual causes. So I thought no surgery would be needed.

A spine surgeon in CA told me that 'this is a normal 53 year old neck'..... The surgeon in MD looked aghast when I told him that's what the guy said. So it seems he thinks I actually have some of my symptoms caused my Myelopathy for crying out loud. Cervical Myelopathy I guess happens to some as they age -- with the arms and such having symptoms of weakness - and sometimes surgery can help - but I read the longer you don't fix this progessive chronic issue - the less likely you will get improvement from a surgical approach to helping the situation.

Thus far my awesome neuro doc locally has helped regulate my blood pressure, helped my 'running out of gas' issues somewhat through the use of Mestinon. He's also kind of the guy who actually gives me hope in my situation - which pretty much feels like I've been gifted with quite advanced age -- in my early fifties. He's my hope in everything. I provided him with a copy of the CT disk and will await to hear what he thinks - but pretty much with my outcomes from the other surgeries - I and he both lean toward NO surgery. I'm to keep an open mind - but I never recovered to better function from the last surgery really...

The surgeon proposes plates and screws and such on three levels and foraminotomies on 3 levels bilaterally too...Says my CT was pretty impressive and he feels the operation will help with my leg weakness issues etc.

Has anyone here had their neck be a culprit for symptoms? They wanted me to rule out a tethered cord too - with urodynamic testing -- but I think that's going a bit overboard perhaps at this point? Maybe not... but I sure thought this was an odd way to hear Happy New Year! A doctor saying, "Yes Nowwhat! you do need surgery"

Have any of you had fusion surgeries? Disk surgeries? I do know that surgeons just love to get in there and do surgery -- it's crazy how they love it -- so I'm skeptical - very skeptical. Yet this guys curriculm vitae is like 32 pages long! Very impressive. Sigh.... what to do.

[nunntrio]

I wish I could give you some input but I have no experience with this. It is interesting so please keep us posted. Let us know what your neuro. thinks.

[DEBRAA99]

I had cervical fusion at the c7/8 area. The surgery itself was a huge success. However, I believe the trauma of the surgery is what triggered my dysautonomia, as I was perfectly fine before. I was in constant pain in the upper back, neck and head prior to surgery, and nothing worked. I could literally feel relief while coming to after the surgery. The downfall..... I no longer have a life due to the onset of dysautonomia soon after. Not sure if this helps you or makes it worse. I guess what I would say is if you allready have dysautonomia, then maybe the surgery could alleviate some aspects of your spine issues.

[dianne.fraser]

Nowwhat - I hope you follow your instincts on the issue of surgery. It doesn't matter how long the surgeon's CV is, if your gut is telling you to not proceed. I would also be interested in evidence relating to outcomes from this surgery (including the impact on patients' overall functioning) - is there any published evidence?

Like a lot of others on the forum, I have problems with neck soreness - but not nearly to the extent that you do - and for me its effectively addressed using gentle physical therapy. When my dysautonomia symptoms are at the most severe, I actually feel at my best the day after a neurological physio session, so I'm convinced that my neck issues are impacting on my overall illness.

Good luck and best wishes

Dianne

[comfortzone]

Hi Again....

Truly my neck sorneness is minimal and was never even investigated until a year or so ago when I began dropping things and having lots of arm tingling and numbness etc. on the left side. My arm ortho doc did a couple of tests (Spurlings and some other) & said your arm issues are from your neck - and sent me for the MRI. When I had that done - and went in for a f/u visit - he sent me to neurosurgery - but I chose a spine ortho doc instead. This was the guy who told me my issues weren't from my neck. The arm ortho just shook his head & didn't understand - said, 'boy they still haven't figured you out yet have they' So over a period of a few months all the symptoms in my arms naturally resolved without any intervention. My neck did get sore - but I just guessed aging was the culprit.

I tried chiro this past summer - 2 visits and got worse with pain and back spasms and got lightheaded and nauseated after the treatment...never went back again. I now have PT who has been focusing on my Thoracic spine as it is tender and tight with spasms. Nothing really has helped in PT for any length of time it seems (save the one guy back in CA who did an osteopathic manipulation that cured the whole mess of spasms - the chiro adjustment ruined that and I swear I'll never try another...grr) I just got back from the pain mgmnt doc's PA who obliged a thoracic spine MRI - just in case there's some big reason for my symptoms found that way (though I doubt it).

It seems really very confusing when I read info from the spine universe website on cervical spondyl-something myelopathy.... Like you should rush into it for the best outcome.... So I've been hoping to speak to my neuro before the surgeon calls me back. I know I'll get nervous on the phone with him and kind of scared. I don't really know what questions to ask...

Except about stats on function in daily living post op just as you say. I'm not doing all that wonderful now trying to work ... I am now actively seeking a desk position as the cooking is really beating me up bad. I'll have to ask about what happens should I do nothing at all to avoid surgery. A three level fusion sounds like I will not have any ROM of my neck afterward doesn't it? Sounds dreadful honestly. And with EDS does anything really 'hold'? And yes the trauma of another massive surgery could set me up for some serious disability if I tend to not do well with them as is the case. Dysautonomia type issues really flared up after the knee surgeries.

I'll have to practice what to say -- I'm usually too talkative. But now I am sort of afraid to answer the phone when I see the docs number! Thanks for listening and commenting - it is appreciated very much....

[comfortzone]

I had cervical fusion at the c7/8 area. The surgery itself was a huge success. However, I believe the trauma of the surgery is what triggered my dysautonomia, as I was perfectly fine before. I was in constant pain in the upper back, neck and head prior to surgery, and nothing worked. I could literally feel relief while coming to after the surgery. The downfall..... I no longer have a life due to the onset of dysautonomia soon after. Not sure if this helps you or makes it worse. I guess what I would say is if you allready have dysautonomia, then maybe the surgery could alleviate some aspects of your spine issues.

Hi!

I'm curious - if you feel like answering - would like to know.... was the fusion d/t a specific problem such as joint hypertrophy or herniated disk or osteophyte formation... or a combination of those things? It reads on the CT that I 'might' have some 'mild' cord compression better assessed on yet another MRI.... I thought you could live with a degree of cord compression just fine? Maybe not. I read some surgeries are better with a posterior approach and others better done with an anterior approach. Did you have plates and screws and hardware to help stabilize the fusion till it set? I worry about pain post-op now as well as a host of other things anesthesia related as no one knows why my case went so weird with the knees... knee replacement surgery is bad pain ... if neck is the same or worse - I will not consent unless it's life threatening. I sure do hope your dysautomia lightens up and fades away.... I've read it can and does do that in a wide number of people ... may it be so for you!

[HopeSprings]

Oh my goodness, what a predicament. Hard to know whom to believe right? I have neck issues as well. I have two herniated discs, one at C5/6 which "indents the left thecal sac and contacts the cord and exiting nerve root." I have definite weakness in the left arm due to this. I was scared when I heard these results-- what, it's pushing on my spinal cord?? I saw three neuro-surgoens -- one said "YOU NEED SURGERY --look, look at the MRI-- it's pushing in right there." Two others said I did not need surgery and they seemed confident about it. I decided not to do it. It still scares me -- is it possible that if I turn the wrong way or fall or something that I can become paralyzed?? It's very difficult to make a decision when you have conflicting Dr. opinions. If I were you I'd get a couple more opinions.

[comfortzone]

Oh my goodness, what a predicament. Hard to know whom to believe right? I have neck issues as well. I have two herniated discs, one at C5/6 which "indents the left thecal sac and contacts the cord and exiting nerve root." I have definite weakness in the left arm due to this. I was scared when I heard these results-- what, it's pushing on my spinal cord?? I saw three neuro-surgoens -- one said "YOU NEED SURGERY --look, look at the MRI-- it's pushing in right there." Two others said I did not need surgery and they seemed confident about it. I decided not to do it. It still scares me -- is it possible that if I turn the wrong way or fall or something that I can become paralyzed?? It's very difficult to make a decision when you have conflicting Dr. opinions. If I were you I'd get a couple more opinions.

Yes that sounds like a good idea. Sorry about your arm too! Well I just got off the phone with the NS doc and he said I needed surgery. When I stalled mentioning a host of complicating issues he inquired as to why my hesitancy.... He then explained a normal spinal canal is about 8mm - with the area in question on one level of my neck he said it's 4mm. I then said - so what if I just do nothing at all about it. He said I'd have increased clumsiness of my hands, increased trouble with walking, some urinary issues like incontinence and frequency and constipation....eventually I'd be in a wheelchair and not long after that I'd be a quadraplegic functionally -- then said "not that I'm trying to talk you into the surgery at all - this is just what you are dealing with" I told him I needed to consult with my local physicians before giving him my definitive answer as to yes or no. He said there's only one or two other docs in the US he'd trust with this surgery because of my EDS - and I could choose them - but he feels he's the best qualified in the US to do this.

So yes just as you say....who's right? Who's wrong? I hope to be able to discuss this with my neuro doc soon - so he can 'prove' the doctor right or wrong based on his continued clinical exam and perhaps hopefully further diagnostics - such as SSEP's perhaps? See this surgeon really only met with me for about ten minutes or so before dashing off to another emergency surgery. He doesn't know all that much about me. But anyway -- I'm sure I'll have a list of questions for him the next time we speak.... sounds like I may not get "better" so much as I'll prevent further deficits perhaps.

And why hasn't anyone thought this a big deal? As you say - it's because perhaps it's NOT a big deal --- or others just minimized a pathological condition - because like so many with EDS, POTS etc... "we look so good!"

LOL -- gotta laugh - I am confident that it's all in God's hands and if I do have surgery I have a very competent man to give it a go. No guarantees - this much I know fully. I could end up worse.... So on we go!!!!

I hate the thought of a permanently 'stiff' neck that won't bend.... is that what fusion does? Good grief!

[Chaos]

Nowwhat- I'm NOT trying to talk you out of surgery. I think Dianne is right when she said to trust your gut. It's a VERY big decision to make and one I wouldn't like to have to contemplate. You are definitely in my thoughts!

I can tell you the statistics for fusions are usually <50% success for relieving the symptoms that they try to relieve thru surgery. Also, once you fuse a level (or three in this case) it will lead to increased forces going thru the levels above and below the fusion. It's fairly "normal" to see those levels start to break down at some point after the surgery. For example my mother in law has had 2 surgeries so that she's now fused from L-2 to S-1. Within 6 months she was showing significant breakdown at L1. Granted she was 79 when she had the surgery and had some osteoporosis of her vertebrae when she had the surgery. But the fact remains that within 6 months there was enough break down that the dr. pretty much just said "you'll end up in a w/c at some point and there's really nothing more to be done". On the plus side, she was having VERY severe pain when she decided to have the surgery and it did relieve her pain...for a couple years. Now it's coming back due to the breakdown up higher. She also had signs of nerve damage when she had the surgery and none of that changed at all after surgery.

My sister has 2 friends who had cervical spine fusions about 2 years ago. One got very good relief, the other had no relief from the pain. Neither one had any significant improvement in their neuropathy symptoms in their arms. I'm fairly positive neither of them had the neurosurgeon you are dealing with, so maybe he has a much better record than these 2 docs have. I'd certainly be asking him some questions about his success rate. Not sure how you could verify it independently but I think it would be worth a try. Maybe see if he has PTs he tends to work with. They frequently have a different perspective than the surgeons do about actual "success" of a surgery.

If you are going to do a fusion, I think you're very wise to have a neurosurgeon do it rather than an ortho. It's a very broad brush I'm painting with, but in general the ones I've seen do better when they were done by a neurosurgeon. (Just my experience.)

Good luck. Glad you have a local doctor that you can trust and that you feel has been so helpful in the past. Hopefully he can give you some good guidance.

Hugs!!

[comfortzone]

Thanks for the note -- I truly appreciate the anecdotal evidence from your friends and family ... I learned today that my neuro wants me to get a second opinion by a neurosurgeon at Mayo Clinic - so I'll do that next week. I learned from looking on line that patients have great ratings on this new surgeon I'll be seeing soon - so that's a bit of a relief. I have no funds for this consult and have Medicare only with no supplement (they don't allow disabled Medicare patients to have supplemental insurance in Arizona!) So hope he doesn't order a lot of expensive testing -- it will be good to hear what he says.

Meanwhile I told the neurologists nurse what the MD doc said and all he said was that on CT there did not appear to be anything that would endanger me to the point of quadraplegia currently - and to get the referral. We'll talk some time after that. I also will see my pain mgmnt specialist on Monday and run things by him as well as those guys are into spines quite a bit it seems.

I did tell the NS that my case is Complicated! What caused what - and what will the surgery do? One voicemail I have states that the surgery will have me feeling quite a bit better if all goes well. See my issue isn't pain. Although I am a Chronic Pain patient - my neck has never been any worse than the rest of me with EDS.... So I wonder if the surgery is primarily to limit further compromise to the spinal cord and any resultant disability -- yet when you read the film report it again only states 'possibly mildly compressing the cord' -- I think I have more of a cord compression issue in the lower levels of the lumbar spine to be honest!

But he knows what he's saying I'm sure and likely is basing things on my symptoms and on the true measurements of things and all that doctor stuff that I have zero experience with deciphering. I do trust him --- I think his reputation as a fine surgeon and fine gentleman is solid and I'm so blessed toe be his patient.... So it will be interesting to hear how Mayo responds .... the other surgeon suggested I could choose another to do this surgery - as if anyone else would agree I need it.... Time will tell!

I have heard the same - that fusions alter other areas - and with EDS -- we are 'altered' already lol - with things bending too much.....so this could simply be asking for more trouble.... Hopefully I'll get some good questions put together for the next phone calls and appointments --- Thanks again for writing!

[juliegee]

Whoa- I don't envy your decision at all and what a dire prediction for the New Year I do hear so many negative results with this kind of surgery- I think someone mentioned 50% rate of success... and I have to imagine the folks with success stories were pretty healthy going into it and didn't have your health issues- dysautonomia, EDS, etc. The neurosurgeon recommending this sounds very sure of himself, but has he taken the time to thoroughly know you?And understand your hesitations? They sound pretty based in reality to me.

I think that a second opinion is a fabulous idea. I also think it would be wonderful IF you could find others with a similar array of DXes, who have been told they need this surgery. (I realize that's what you're trying to do here ) Maybe you'd find more on an EDS forum. Talking to others who've been faced with this decision would be wonderful- IF you can find them...

I agree with other posters. You are a smart cookie & should trust your gut and instinct on this. let us know what you learn & decide.

Julie