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    Old 11-30-2007, 01:20 PM   #16
    Braveheart07
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    Re: I have been diagnosed with a Cervical Myelopathy

    Neckpatient--

    Sorry to hear you're having a bad day...staying in bed on a rainy day sounds like a remedy to me, I hope it works........OK as far as my post Dr. appt goes----She (My regular neuro's associate) said I should have another EMG, this time for 2 hours (she must get joy from this..), and another MRI, this time with contrast...both are scheduled for next week....when I returned home there was a letter from the last NS that I saw...this guy Michael Lavyne, has lots of experience with C-Spine surgery...he is suggesting "further radiographic studies to determine the pathology" he also suggested a "gadolinium study" , which I believe is the contrast MRI I have scheduled. Since he is not certain that the C5-6 soft disc herniation is accounting for all the symptoms on the basis of the hyperreflexia above the C5-6 disc space, he had nothing on the radiographic studies to indicate the cause of the myelopathy. Alot of that was plagerized directly from the letter, I understand most of it, but not the implications...further study is the bottom line....I like the fact that he isn't rushing to judgement, and pushing to operate before he knows ALL the facts , or at least more than we have now....(This particular guy doesn't take my Ins. plan, so I can only go so far with him....maybe I'll pick his brain for as long as I can...)...I thought I was risking permanent injury by delaying surgery, but the Neuro didn't think so...and this last DR (Lavyne) may be on to something......So, it's more of the same....can't wait for that 2 hr. EMG !!
    In your last post you mentioned that the MRI will not show everything because our bodies are different standing up....I've noticed that when I'm up, my left hand cannot open/close as fast as my right (about half as fast), with my index finger being slower than the rest...this is not the case when I'm laying down---it's just as fast as the right....The Neuro didn't seem too interested in this fact--it probably means nothing....
    Anyway thanks for responding......I hope you feel better..... Doug

     
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    Old 12-01-2007, 08:09 AM   #17
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hi HM.just had a thought here.what neck p mentioned about the MRI being done while lying down and how things change upon standing?honestly i really do think,espescially considering the docs unable to actually explain things here,obtaining a 'standing' MRI may actually be the best possible way to try and determine what in the heck is going on.they do have these availiable tho i imagine you would have to try and track one down,or your neuro would know where one actually is.quite frankly,EVERYTHING within your spine changes depending upon your posistion.when your symptoms actually show themselves or get stronger when you are standing,well it would make sense to actually DO the MRI that way,you know what i mean?load and wieght bearing change alot of things when you are just upright.when you lie down,the spine is more relaxed and wont actually show how the spine sits when you are upright.possible compression could be going on within your spinal canal while standing that just is not there when you lie down.this could explain the myelo and alot of the seemingly 'unexplainable' symptoms that you have.i just really do think,espescially with your case here that a standing MRI may reveal certain things that go on only when you are standing up.just the simple fact that your spine/load DOES change with posistion,well it really could help with a real Dx of what is actually behind the symptoms that defy explanation ya know?i would really try and push this with your doc.there has to be one of these scanners somewhere around you at at least one place that does radiology as their main business.

    the place i go for all my radiology(my 16 MRIs)and various other studies i have had to have,they have a chain type business with facilitys kind of scattered thru out our metro area.when i had to have whats called a 3 tesla(or 3T) scan done on my brain after my aneurysm was found,i got sent to the only one of their seven facilitys that had this type of scan availiable.these types of rad places will generally have at least one of the newest and improved types of scanners availiable.believe me,they make tons of money having like the 'only' one of its kind type scans availiable.i am sure if you went thru one of these types of radiology 'chains' they would really be your best bet in finding that type of scan.actually even having the 3T scan could be helpful for you too.this is the same as an MRI but it actually uses 3 times the normal magnestism that an ordinary type of MRI has.its stronger therefore it gives much clearer and more detailed pics of whatever it is looking at.just another thought for you there.but the standing MRI,well at this point,i really do think this could be the only way of actually revealing the possible culprit for your symptoms.it would make alot of sense,ya know?just some ideas for you.if you could get that next MRI they want done this way,well who knows what they could finally find.good luck and please keep us posted HM.hang in there,Marcia
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 12-01-2007, 11:08 AM   #18
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    Re: I have been diagnosed with a Cervical Myelopathy

    Marcia--

    Thanks for the thoughts !! I mentioned a standing MRI to the Neuro yesterday, she said she didn't feel it would make that much difference, and has had better success with her patients laying down (less movement, I guess)...I have a 2 hour EMG, and a MRI with contrast scheduled for Fri, 12/7.......we'll see what these show....
    Thanks again for you reply......Hope you are feeling better..................Doug

     
    Old 12-02-2007, 08:18 AM   #19
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hi,
    Need a little help. Not sure I am doing this correctly but I have no idea how to create a new thread. My dad has also been diagnosed with Cervical Myelopathy. We are going to meet with some Drs. Going to meet with a neurosurgeon this week but I am now reading about Ortho surgeons that specialize in the surgery. How do you know who is best for your surgery?
    Confused!

     
    Old 12-02-2007, 08:36 AM   #20
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hi HM...
    I haven't posted here in awhile...I think you're wise to get further studies prior to jumping into a surgery - to be sure what is causing your symptoms. I had a large C6-7 herniation into my nerve root in Sept. 2005. For 7 months I dealt with excruciating neck/arm pain....then the real fun started. In April 2006 I started to have, and still have tons of the same symptoms as you and some others as well. Lots of muscle twitching-widespread, hyperreflexia, over-the-top startle reflex, gait issues (now improved), additionally increased neck/arm pain, numbness - bottoms of feet, but also numbness in face, tongue...crazy stuff. Anyway, normal EMG, 2 normal brain MRI's, bloodwork the whole nine yards. The MRI of my C-spine in April 2006 appeared my disc was improving - so off to the neurologist (vs my neurosurgeon) for all the testing. I continued to be VERY sick, my entire nervous system just went haywire, like overloaded, nerves felt like they were in constant vibration, hard to describe. More testing, more testing, Feb 2007, decided to have another MRI look-see at my brain (I pushed for another shot of the c-spine at that time - mind you, my thoracic and lumbar had been looked at prior, okay, couple "minor" bulges in lumbar area). Now (Feb 07) the MRI of c-spine shows the disc "flattening" the spinal cord. Needless to say, off for ACDF surgery in March 2007.
    I am better, not well. Some of my symptoms surely relate to the whole cord problem, some I just can't quite figure, nor can my docs. Marcia has mentioned sympathetic and/or parasympathetic damage. When I bring this up to the docs they fairly blow me off. I have gone through the whole ALS scare, as I'm sure you have/are. I am almost 2 years into this crazy neuro stuff without a lot of weakness, when I do have it, it's fairly short term and then seems to get better. Anyway, I'm letting go of that neurotic, jump to the worst thinking, especially since this has been going on for so long.
    I am better since surgery, but still screwed up. My latest is to go see an MD who is known to take a lot of time, do lots of labs and really try to get to the bottom of things. Maybe this is just my new life or maybe I will continue to oh-so-slowly improve, if I'm lucky - I could be just impatient. The MD talked about the possibility of various nervous system infections. I'm probably just wasting time/money...but, I just need to see if this is my new life (bummer) or if there is still something going on that is actually fixable. I will continue to read your posts and am interested in hearing how your testing goes on 12/7. Best of luck to you; I hope you get answers soon and can start feeling better. I COMPLETELY understand what you're going through. Mona

     
    Old 12-02-2007, 08:53 AM   #21
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    Re: I have been diagnosed with a Cervical Myelopathy

    it kind of depends on the neurosurgeon, orthos actual level of training and what needs to be done during any actual surgical procedure.not every NS is even able to go into the spinal canal for any type of surgerys,and most,i am just saying most here,orthos usually do not have that level of training.there are some orthos who are specificcally trained and are able to go there but not nearly as many as as most neurosurgeons are.just based on my experiences with neurosurgeons,orthos and even neurologists,when it comes to the more detailed innerworkings of the spinal cord area i would tend to have to go with a neurosuregon who has ALOT of overall knowledge and experience with whatever my particular problem actually is that needs surgery.you can ask any surgeon about their training and experience with any given surgery or just how many cases of whatever they actually have treated.also obtaining more than one opinion is ALWAYS a really good thing.any actual Dx or spinal issue and what you are told about it really depends on THAT particular specialists level of experience in dealing with that particular issue.it just does.seeing someone who has the most overall experience and knowledge,well you can't beat that ya know?

    personally,for anything wrong i have in my c spine area,i would always go with the most experienced neurosurgeon,vs further down in the spine where things are not as highly innervated as they are within that c spine area.its kind of a whole different type of thing up there in the c spine than it is the rest of the actual spine.but any real cord affectation,a neurosurgeon would win with me.i have an excellent orthosurgeon who really is a great surgeon.he did my knee surgerys and will be doing my torn rotator cuff surgery,but as far as him doing any c spine surgery on me,well thats a whole different ballgame ya know?it just comes down to knowledge and experience really.if you see a very highly experienced ortho who actually has lots of experience with c spine surgerys and does go into the spinal canal often,that would be good too.it all depends on just what the actual problems are and what he needs to have done.

    just what does his MRI state about his most significant findings on his MRI report summary at the very end?if you could post that part the way it is actually written,it would help alot in giving you the best possible advice.its just that the way the rad writes that report and they words that are used really do sometimes reveal just how really important or significant a particular finding actually is.its all in the way the present it on that report.it would help alot.


    HM,i really do think the posistion actually does matter alot more than she seems to think,espescially considering your actual situation and unexplainable symptoms,ya know?i am not too sure just how they actually do the standing one,but i would think it would be done in a way where the patient still was pretty stabilized so they don't move at all like with the other.doing at least part of that two hour MRI(two hours is really really a very long time actually even for the whole spine and brain.mine was about one hour tops)with you actually in the posistion that brings out the symptoms would just make much more common sense ya know?they haven't been too successful at this point doing things the other way so why not at least go there?thats just my opinion and considering the situation and how your symptoms present themselves.it would just make much more sense to me anyways.hopefully something will finally show itself on this scan so at least you will know something more than you do now.good luck HM and usual,keep us posted.Marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 12-02-2007, 09:37 AM   #22
    Braveheart07
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    Re: I have been diagnosed with a Cervical Myelopathy

    Mona-

    Thank-you for responding...Yeah, your situation sounds very familiar...It's funny that you mention the whole ALS thing, because that's on my mind even though "there is no evidence" from the tests...The odds of having ALS, and a condition in your c-spine that causes the same symptoms, at the same time are EXTREMELY RARE...most likely all stems from the C-spine. It makes me feel that ANYTHING is better than ALS, so I'll deal with this stuff as best I can. I am optimistic that it will get straightened out somewhat, that I just have to be patient, but diligent as well.....I'll do the tests, and see the Dr.'s, but I'm sure I'll need the surgery sooner rather than later. I just want them to have as much info. as possible going in....I also have to choose a surgeon, that will take my Ins. Plan (no easy task). I'm sure you've found this board to be very helpful..."Feelbad", and "Neckpatient" are very knowledgeable, and helpful..I would look up their posts/threads...It's nice to hear from someone who is going through the same (unexplainable)thing(s)...we can share diagnosis' and knowledge (FUN !!) ...I hope you feel better, I'll keep an eye out for your posts......Thanks again !.......DOUG

     
    Old 12-02-2007, 09:54 AM   #23
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    Re: I have been diagnosed with a Cervical Myelopathy

    Feelbad(Marcia)-

    Thanks again for your response----I agree with you about the standing MRI, I feel like, it can't hurt...I'll see what happens..Oh, and the 2 hr test I mentioned was for a EMG (can't wait !)--my MRI is right after the EMG (fun day)..You asked about the MRI impression...here goes;
    MODERATE RIGHT SIDED EXTRUDED DISC,C5-6, MODERATE RIGHT LATERAL CORD COMPRESSION AND SEVERE RIGHT C6 ROOT IMPINGEMENT IS SEEN
    MILD POSTERIOR BLGING DISC ANNULI AND BONY PRODUCTIVE CHANGE,C3-4, AND C4-5, MILD BILATERAL FORAMINAL ENCROACHMENT IS SEEN AT BOTH LEVELS.
    MILD POSTERIOR RIDGE,C6-7, SLIGHTLY MORE RIGHT SIDED, CAUSING MILD RIGHT C7 ROOT IMPINGEMENT
    I hope you can understand/translate that.... I also have the "Impression" from a SEP study (somatosensory evoked potential).... "This study is consistant with peripheral or brachial plexapathy on the left. Central conduction velocities are within normal limits."....The Neuro's, and NS's don't read too much into this, they are satisfied that it is normal....
    I know you're not a DR, but I appreciate your input/knowledge and the time you take to post them on this board..Thanks again..........................Doug

     
    Old 12-02-2007, 10:28 AM   #24
    Braveheart07
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    Re: I have been diagnosed with a Cervical Myelopathy

    MUGGLE--
    Hi, I saw your post asking how to start a THREAD..it is a little confusing, I'm new too..anyway if you go to the home page, above, and to the right of HEALTHBOARDS writern with a grayish background, click on "Messageboards", then click on a HEALTH TOPIC (not a testamonial. or general topic)..this will bring you to a new screen, just above the actual threads, and posts, you'll see an oval button for NEW THREAD...just click that, and start a new thread.... As far as finding the best surgeon, yea it is confusing..but if you research them on the net, then visit a few, you should be able to narrow it down...I've seen 4 Neurosurgeons (NS's), and immediately dismissed 2 of them ( one was more of a brain surgeon that did spines, and one was so anxious to operate, that it made me nervous...it turns out this guy wanted to do a procedure that was so new, most NS's wouldn't consider it) It also will depend on who takes my insurance....I noticed that you are in NY...I'm on L.I., and saw 2 in NYC....Dr.Michael Lavyne...very qualified, but doesn't take my coverage...and Dr. Michael Kaiser at Columbia Pres.--also very qualified, and may "work with" my ins.co.......I'm also seeing Dr. Mullins in West Islip..and see what he says of my tests and symptoms...Bottom line is that being in the NY area, we have alot of options...Columbia-Presbyterian is ranked #3 in the country for Neurosurgery, so I'm leaning that way....Just do alot of "******ing" and then branch out to do all the research you can, than go by gut instinct after you meet some of these guys...

    Best of luck to you and your Dad...keep us all posted on these Boards...

    P.S.---this board is FANTASTIC...use it often...IT WILL HELP !!..............Doug

     
    Old 12-08-2007, 07:34 AM   #25
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hi HM...

    Just checking in...any info yet on your 12/7 EMG/MRI? How did it go? Mona

     
    Old 12-08-2007, 07:56 AM   #26
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    Re: I have been diagnosed with a Cervical Myelopathy

    Mona--
    I was looking for you--
    The test syesyerday were ,another EMG, and an MRI with contrast....The neuro doing the test gave me a short verbal report...she said the symptoms appear slightly worse..(weakness on left side, and apparently some weakness begining on the right--although I cannot discern this)..this was really no surprise to me because I felt I was slowly getting worse, that's why I scheduled the appt!! The MRI will be anaylzed, and I have a appt with my regular Neuro Monday morning to go over both reports...They are still confused by my situation..."something else is going on.." is what I've heard from everyone....that "something else" is scareing (sp) me now----I'm fearing the worst-- ALS...I believe it was you who had similar fears ?? Can you elaborate on your symptoms, and diagnosis ?? That would calm my nerves a bit......I've read alot on the symptom of myelopathy/compression...and they mimic ALS (I hate even typing that)...so why are the doc's so confused ?? I'm trying to stay positive---but it's tough, my wife is so strong and supportive, and I hate to burden her with all this crap....I need to find a surgeon soon, and take care of the C-Spine issues, and see what develops after that. Thanks for any advice----Hope you are doing well !! DOUG

     
    Old 12-08-2007, 08:31 AM   #27
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    Re: I have been diagnosed with a Cervical Myelopathy

    hi Doug,so you had the new tests done huh?hopefully something will finally really show itself for you.i just wanted to mention something to you about your fears of this actually being ALS related?one of my best friends died from this at age 44 a few years ago,and honestly,what you have been describing as your symptoms here,i realistically don't see the real types of symptoms that she had in what you have been describing,really.i really do think that if this were indeed ALS related,they would have been doing other tests such as muscle biopsy and looking much harder at your overall muscles themselves.i think you would really be displaying more profound types of muscle LOSS here at this point too,you know what i mean?

    her very very first real symptom was foot drop in her right foot.she had been wearing sandals while at the state fair all day when suddenly she couldn't seem to keep it on her foot anymore.she said it felt like she had no control over her foot as far as pulling it up or really getting it to move like she wanted it too.this slowly progressed up thru all her lower torso muscles then up eventually hit her diaphram.thats when things got really ugly for her.i really,honestly,don't see your symptoms as quite in that same catagory as what she had,if thats any comfort for you.ALS can actually start in just about any area then work its way to the diaphram.but the affected areas will usually be more contained and follow some sort of 'trail' or pattern affecting the muslces as it goes along,you know what imean?this really is not what you have been describing here so far.your symptoms appear from what you have stated,to be more "spaced out"type things?am i right in assuming that?it tends to affect an area and progress along from there affecting all muscles in that path.

    i know its scarey as hell having all this wierd strange crap going on with no real logical answers for it.eventually it will all come together for you.whatever is actually going on in you will somehow 'show' itself on some sort of testing at some point since something IS very obvioulsy going on in you ya know?the biggest problem with any type of scan is that it is only that,a scan of a given area and not a picture like a camera would give,so some things will just not always show themselves.hopefully this newest scan will highlight something or at least point the docs in the right direction.ya just gotta keep hangin in there til whatever it is actually shows itself.i just realistically dont see ALS in your overall type symptoms here,really.but of course i am not a doc.but i did watch my friend go thru this.good luck Doug,and as usual,keep us posted hon,Marcia
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 12-08-2007, 09:21 AM   #28
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    Re: I have been diagnosed with a Cervical Myelopathy

    Marcia-

    Thanks so much for the insight---I know you're not a DR., but your experience is appreciated.....You definitely gave me a little peace of mind----THANKS SO MUCH.

    DOUG

     
    Old 12-09-2007, 02:22 AM   #29
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    Re: I have been diagnosed with a Cervical Myelopathy

    I read of few of the posts and then went to the end to see if you had surgery yet. I saw you were worried about ALS. Like Feelbad I also have a friend who has (not had like **) ALS. His was diagnosed after all tests revealed nothing else. He has had it now for a few years. Oddly he has a slower form I guess. His speach was what was affected the most. I started to tease him one day about staying out drinking since he sounded like a drunk with slurred speach. I felt like a dog because that wasn't it it was the affects of ALS. Now he is having weakness but still doing OK other then his speach is just awful and unless you know him you couldn't understand him. And he is only 36. So yours truly sounds like your spinal cord compression. I guess I am confused and since I didn't read all 4 pages why have you not had surgery? I wish I had it a long time before I did. I now have permanet nerve damage to the left side and now likely right too. Left is from cord compression. It isn't worth it.

    Id also like to add that I had a EMG and it showed normal findings. However my CT scan and two MRI's showed that I had right side nerve compression at C6/7. I have had all the symptoms of it and was disappointed in the EMG results. I have no faith in them.

    Last edited by Backinthesaddle; 12-09-2007 at 02:26 AM. Reason: add to:

     
    Old 12-09-2007, 09:00 AM   #30
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hey BITS..

    Thanks for the response.......I don't know why I'm thinking the worst case scenario...there are alot of other possibilities, most obviously the cord compression/stenosis etc...but they feel the symptoms don't match the MRI...since then I 've had a CT scan, which showed osteophytes, and spurring that the MRI didn't show, I've also had another MRI this time with contrast....I see my Neuro tomorrow (Monday) so we'll see how he interprets the reports........The reason I haven't has surgery is mainly because the last NS I saw (I've seen 4) didn't reccomend surgery at this time until he saw more reports (the CT scan, and contrast MRI)...then the report was sent to the wrong address which further delayed his interpretation....Again, tomorrow I'll call him and see what he makes of it.....I've seen a few NS's, and went by their qualifications, rather than if they take my insurance (3 of 4 don't and the one that does I wasn't too crazy about)..So surgery is inevitable, and I'm in the process of finding/scheduling a NS----fun stuff !!
    Again thanks for the response....hope you are feeling better.
    Doug
    PS..BITS---did you have symptoms on the opposite side from your herniated disc ?? ("neckpatient" mentioned that a while ago)
    was that ever explained to you ?? (I have right sideed herniation and my symptoms are left sided.....)

    Last edited by Braveheart07; 12-09-2007 at 09:03 AM. Reason: more info

     
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