Compressive Cervical Myleopathy - Help

[Goodkarma5]

I am 40 years old. Was misdiagnosed with Fibromylagia (fibromyalgia). Have suffered for years. Recently found out tha my Rheum. missed an MRI from 2 years ago. I have Cervical Compressive Myleopathy of c5-c6 and have seen a Nuerologist and Othopedic surgeon who agree I have a degenerative spine disease. I will need surgery and several more as they "become ripe". I have been on short term disability for the first time in my life. Still I couldn't go on with all the symptoms - pain, numbness, tingling, headaches, clumsiness, and very weak. I am a very positive person so it shocked people who didn't know my suffering. I have been told that my problems most likely will not reverse especially with the disease already spready ( on MRI). I also have been told I'll lose mobility ( anterior disketomy w/fusion). I lost 20 lbs and weigh 93 lbs. Even being on a computer for more than a few min. at a time is painful. First question...my primary care found a neurologist specializing in degenerative conditions. Is it ok to cancel my surgery on Dec 1st with the ortho sugeon to see her first? I have a feeling I'll need her for a long time. Also, I have gotten over being ashamed of having disability payments, but if I end up on long term disability, can I still donate a few hours here and there to the community without getting into trouble ( I need a life too)? The nature of this disease is never knowing when you can be whole. Thank you so much and any advice is helpful. Bless you...Lori

[CCF-Neuro-M.D.-PW]

A neurologist specializing in degenerative conditions may not be the type of specialist you need - they usually are experts in progressive diseases of the brain such as dementias etc rather than degenerative spine disease, a completely different medical problem

Degenerative spine disease is usually from wear and tear over time on the bones and ligaments, so although can cause pain and disability, is not a progressive neurological disease resulting in death such as the above.

You need to be careful about what symptoms you attribute directly to nerve compression from a disc and what is from porr posture, soft tissue etc, as surgery will only prevent progressive neurological disability ie muscle strength etc, but will not necessarily treat pain, although intractable pain can be anindication to do surgery.

I would still advise to see a neurologist who may be able to tease out which problems are form the disc and which can be solved by physio/rehab and which are from another cause altogether. In the hands of a good conservative neurological and neurosurgical team, you should be able to give many more hours to your community.

[denise dp]

Hi, sorry to hear about all you have on your plate.But there is help out there. First I thing you need a good neurosurgeon.Have your neuroligist set you up with one if he isn't one himself.Orhto dr. don't do this kind of work as for as I know.That way evev if you don't need surgery now when the time comes youll be ready.I myself am only 9 days out from surgery.For the 2nd time and am recovering well. The first I had c4-c5&c5-c6 fussed W/titanum implant,and now I just had c6-c7 W/no implant or removal of old hardware. But they did tell me if it had of gotten in the waythay would have to take it out but it is still there. As far as the fussion went I'm recovering welllots of trouble going from lyingdown to sitting up the spasmis soo bad I almost cry butas long as i dont let the pain get too bad before I take my meds I'm ok. They had to remove a lot of scar tissue and I have about a 5" incisionin the middle of my neck from end of chin to end of jaw line.Most of my pre surgery symptoms are either gone or at least better From being constapated to not being able to empty my bladder all the way.the latter 2 are back to normal now. Well I hope I have said something to help.Just write down symptoms when you are at home and take them to dr. with you and keep you appointments let the dr. know of any changes they are all important. Take care

[Goodkarma5]

Thank you for your help! May I ask you when it all started for you? Did you go through alot to find out? Is yours a myleopathy? Were you able to resume work between times? I have been told that I need the c5-c6 discketomy w/fusion and that the ortho can do it. But when I found out there was a specialist that deals with degenrative spine diseases and she is a neurologist, that I should postpone my surgery and see her first. If the most they can do for me is fix the disks to protect the spinal cord and stop the compression ( which is alot), it still means that I will be left to deal with all these symptoms. Since being on disability it has been easier to deal with. Nothing seemed worse than losing your self esteem calling in all the time. I was so relieved to start to get answers. I am married and have my hubby's support, still I always was independent in some way. If I end up on long term disability, I want to be able to still do things like do community service on some good days and things like that. Do you have good days? I feel so bad for you. How many years in total have you been dealing with this? I have no children except my furry one. I guess God knew I'd have my hands full. God Bless you Denise. Could you share more of your story?

[Kikko]

If you have good doctors, whether it be a neurosurgeon or an ortho that specializes in spines, you will be in good hands. I have had a cervical laminectomy about 26 years ago, and was doing well until a huge wooden sign fell on my head as I walked out a store.  It was down hill from there.  A few years ago, I had to have an anterior multi level fusion.  The surgery was a sucess but my neck is not! I am losing the natural curvachure of my neck, but most of that is due to my age (65)and to the laminectomy.  I now face low back surgery due to DDD and spinal stenosis.  I am not worried about the surgery, as I trust my Doctor.  All  I want is most of the pain to be releaved.
So GoodKarma, don't worry.  The doctors are there to help you the very best they can.  Work with the one you feel most comfortabe with, and trust his proceedures.

God Bless you,  Kikko

[patsy10]

I also had a C5-6 disc problem with cervical myelopathy.  My disc herniated 3 years ago, got better after a couple months.  I was fine for 3 years then 5/05 I developed sudden leg weakness, frequency, numbness and tingling down to my toes and also in both arms.  I had diskectomy, fusion with titanium plate in Aug.  My arms feel better but I still have neck pain but not quite as bad as pre-op.  I still have the leg weakness, numbness tingling.  It hasn't gotten much better. None of the docs said that I would or wouldn't get better.  They just said it would take a long time.

Personally, I would not let anyone touch my spine but a neurosurgeon.  A neurologist can only treat medically and that wasn't an option for me.  I am able to work part-time but at one point I did not think I would be able to.

Also, I waited 3 months to have the surgery and they said that maybe I waited too long.

I wish the very best for you and hope you will improve.

Patti

[denise dp]

Hi, again I hope that through me I can help you in somesmall way.I forgot to ask you, how old are you? I'm 41 and this all started in my late 20s. I worked like a man at a flower nursery and would get these bad  neck spasams so bad that I couldn'teven breath without pain going from the base of my skull to the bottom of my right shoulder blade and  at this time I had no medical so I would use hot moist towels ibuprophen 600-800 mg every 6-8 hours.It would get better and I would go back to work. I would lift these 50lb bags of soil ang huge bails of peat moss into pick-ups car,and unload trunks whatever they needed.And by the way I was 5'2" and weighed 150lb.I thought I was wonder woman. But by the time I was in my early 30's the wonder was gone and my neck was a wreck. And my stomach too,fom the meds. In 98 I had my first surgery I was so blessed to have a great neurosuregn but he lacked in bed side manner,and didn't tell me anything to do when I got home.He said your not frankenstien move your head. So I went home with one bottel of lortab and one instruction don't ride in a car for 4 weeks.In a week when the pills were gonemy neck was a little sore but I could live with it.The neck Pain never did go awaybut it did get better.The thing that my first surgeondid tell me not to lift at all. My Dr. tells me now not to lift anything heaver than my plate. And I think My first Dr. should have given me the same instructions, it gives your mussels time to heal with less spasams.And by the I'm getting married in a coupel of weeks,Ihave 3kids of my own & 3 grandchildren &on my feance's side7 kids and 3grands. God realy knew what he was doing when he put us together!! I don't know what I would do without him. Well god bless you and if I missed anything just ask.

[Goodkarma5]

Thank you both so much. I truly feel blessed that you both reached out to me. It is so confusing and you both gave me clarity. I made the decision to go to the neurosurgeon who specializes in degenerative spine diseases. This way she can follow my progress throughout the years. Thanks to both of your advice I feel very good about having to cancel the Dec 1st  surgery with the Ortho Surgeon.This new Dr will try to get me in asap and I am sure she will perform surgery not much later than January anyway. I am 40 years old and had been told I have everything from autoimmune diseases to fibromyalgia. I started to think everyone felt like this. Finally the MRI showed the spinal cord compression and the cervical spine disease. Mentally it does alot to you, doesn't it. God Bless you both. I do understand what you have been through. My hubby and I weren't able to have kids but we have 2 dogs and 2 ferrets and I love them like babies.
I just found out I have an abnormal uterine and ovarian ultrasound and have a CA125 cancer test and two more ultrasounds scheduled. My 15-20 lb weight loss makes this even scarier, but it could be from pain and worry , right?
DO either of you have a disease or know what caused your spine problems? How is working part time working for you? I tried a job share and even that failed. I used to never miss work. Still I am blessed with a good disability program at work. I just hope they continue to help if the surgery doesn't help me as I hope it does. You are both angels for reaching out. Honest to God!! Thank you! PS...how long in total until you both were over your surgery? Yikes!!!

[denise dp]

Hi again, You don't even know how much it helps me to know that if I can help one person it makes what I go through a little easier. I just had my c6-c7 operation on the 27th of October. I sure am glad you are going with a neurosurgeon, I didn't know orthos would even do that sort of surgery.
  My neuro said this can be inherited,my mom suffered for years with what I have and they didnt know what was wrong with her and she lived on ibuprofen and malox for years. By the time they figured it out she had spondalossis and her virdabre  look like a sponge. She had 4 operations on her back the last one was the worst,she fell just before and the only thing holding her back together was her spine! Praise the lord she made it through ok  but she passed away in 2003.She was going through pain management and he had her way over medicaded. I'm on pain management too but a little pain is a good thing too. It keeps you from doing too much and reinjering yourself. Well g2g for now.God bless.

[denise dp]

I forgot to add that I broke out with shingles.I often do but this time is pretty bad,w/101-102 pemp and all do any of you do the same  I would like to know. It always happens when I've been very stressed,or in a lot of pain. thanks

[chriscann]

Has anyone ever had scar tissue form post anterior cervical discectom? Pain in my arm is now the same as it was prior to surgery. My surgery was 6 months ago.

[Goodkarma5]

Thank you all again for everything. I had my Neurosurgeon appt today and I feel like my mind is going in a hundred directions. I am sure you have all been there. Now I am just plain old fed up. I feel like I am back 5 years ago being told I have Fibromyalgia. The first Neurologist I saw was certain from reading my MRI's and especially from my exam ( my reflex's) that I had a serious case of Cervical Compressive Myleopathy. He explained and showed my husband everything in detail. He said I shoudn't even wait another year. He said he understood why I was exhausted, weak, in pain, and why it effected my legs, as well as arms. He really understood, and I felt vindicated for the first time in years. The Orthopedic Surgeon who came very highly recommendation confirmed that its progressive and that I have the beginning of the disease ( myleopathy) in the other cervical regions. Enter the Neurosurgeon today. She says its not a big deal ( before even doing my reflex exam), says I could wait a long time, then when I ask if its progressive ( even having her compare the last 2 MRI's that were 2 years apart) she says yes and that its gotten some worse over that time. Then I ask , if I wait can it cause permanent damage to my spine? Yes she says. OK? Then I don't get it.  Then she says that my problem doesn't explain all my pain, and she wouldn't even consider giving me pain meds until MAYBE after the surgery. And we are talking a Anterior Cervical Disketomy C6-C7!!  I am on disability now, and know if I don't get better I need my doctors support and understanding so I can have a life of quality. I need to keep my health benefits because now I have a prexisting condition.  So that means if I have to stay on disability ( which was never my goal)I need  someone who gets it. She even says I don't have Myleoptahy which the other 2 docs do. She is back to saying that even though said she doens't know if she believes in Fibro, that I might have that too. Please...can someone help me?  I felt like the other Dr.s understood what was happening to me. Now I feel like she thinks its nothing. How can that be? Why would she even suggest surgery if its not. SOrry this is soooo long winded. I need to make strong choices, not just with the surgeon, but with someone who will believe me and my MRI's. Oh and by the way, after she did my reflex test...she started saying , oh well I do see may be some spinal cord damage. But its like she didn't want to be wrong after declaring the other Drs. wrong. HELP!!!! Thank you and God Bless you!!!

[JohnM53]

Goodkarma-I`m glad I found a sight like this so that I know that its not "all in my head". I started 15 months ago with a point of pain in my midback that proved to be a protruding t5-6 disc and there was arthritis at t4-5 and t7-8. So after 2 rounds of PT,3trigger point injections and 2 epidurals with no results my hand started to tingle.My neruosurgeon said that it couldn`t be from the thoracic injury soI had another MRI which showed atrain wreck at C4 thru C7 with a bulge,a herniation and a protrusion all with large osteophytes,numerous pinched nerves and a compressed cord.My surgeon said "I`ve seen worse". To which I rsponded "not on me you haven`t". He couldn`t respond to that.He decided to stay with the conservative approach and ordered more tests-anEMG -a Bone Scan-both of which proved "unremarkable".All along the the tingling turned to numbness that progressed up my arm,across my shoulders,down the deltoids and now my legs are wobbly.I am exhausted and have lost 12lbs in a month. And I`m still working 11-12 hrs a day.The new PT doesn`t seem to be helping and in fact makes me nauseous and headachy.The therapists have added Thoracic outlet syndrome to my list of conditions and have suggested i reduce my work hours and to "listen to my body".My next appointment is 11/23 and I am prepared to tell the surgeon that enough is enough and lets fix this mess.All of this has taken place in just 5 months! There must be thousands of people like us out here that suffer the confusion caused by the medical industry that treats patients like the symptoms and not like their friend or neighbor. I`m 52 and feel like I`m 82 and now I`m fed up.Couple that with the loss of ability and you can become a basket case at times and you start second guessing yourself.The emotional roller coaster effects my family my job and my personal life.  Go back to doctors you trust and let them do what they can for you or offer to get you someone that will help you. ITS NOT IN YOUR HEAD! God bless you and good luck. Sorry this was so long-I had to vent!

[denise dp]

Sorry to hear about the neuro. But a neuro told if you are in pain thats a good thing me, that means the nurves are working. Needless to say I didn't think that was too funny. I go to my pt for my pain meds. You can go to a pain management Dr. too. As long as they have the x-rays and stuff. I don't know what kind of ins. you have but I'm on medicade and am on a 2 yr waiting list for pain management here. If I ad the money and/or ins. I could get a private pain management Dr. and if a frog had wings, well we know the rest don't we.lol. My pt. is going to give me my meds till I can get into pain management. I got lucky or I should say blessed because my pt. is the only one who will do it around here.Did your neuro recomend the new dr. cause maybe they could send you to someone who is more simpathetic. I myself have 2 small bulging discs at L3-L4&L4-L5 and I know how painful they can be no matter how large or small it does measure the pain level. But I know I will have my neck done way before my back.Unless I was having bowel or bladder problems or my legs were going out from under me or something major like that they ain't touchin my back. The spine is ment to move and you you start hindering that in any way all you are going to get is more problems.I know what it is like to live without the proper pain management,it makes you want to do anything to make it stop.So now I think you need to find someone to get that under controle.Please remember though that a little pain is a good thing.It keeps you from over doing things and causing yourself more pain in the long run.I'll be the first one to tell you its not going to be easy.But it will get better.Just stay on them and don't let them drive you crazy!!Good luck and God bless

[jan]

I can't say I read everything in every post, but just wanted to say a couple of things from my experience.  An orthosurg and a neurosurg can perform the surgery.  I happen to have a team that is a neurosurg and orthosurg.

I think to find out what's what with the spine/pain you should get an EMG/NCS, if you haven't already.

I had a orthosurg that thought I was ready for surgery and a neurosurg that agreed.  They decided this by looking at my MRI and the level of pain I was in.  I was all set for surg when I had to see another specialist totally unrelated who actually said, "You are not getting that surgery".  He said that 3x's and it was upsetting me, it took me alot to accept having surg.  Then he told me there isn't any guarantee, there are 3 outcomes: 1. you're better 2. you're the same 3. you're worse.  I happen to know 2 people who are much worse after having it.  I have met others who are better because of it.

So I backed out and my neurosurg said fine, but I must see a neuro at least every 6 mos. for a check up.  This is to make sure I don't put it off too long and get perm. nerve damage or atrophy.

Next, what helped me greatly with my pain was 3 epidurals.  They don't work for everybody, but if you haven't tried it, give it a shot (no pun intended).  I was able to get off oxycontin and rarely take anything for pain.  I still have abnormal feelings in my arms and some pain, but nothing compared to before.

[denise dp]

Hey see what happens when you proof read before you post.LOL. Just realy wanted you to know that pt means family practioner. And maybe I'm wrong about the ortho just please do a lot of checking before you do anything. God bless

[angelwings31]

Hi everyone! I had surgery on august 13th 2005. I got the titanium plate with wall and the screws. I woke up to my C5,6,7 being ruputered and pushing on my spinal cord couldnt feel arms,belly,sides,hands,and legs. Doctor told me, I had no other choice but to have the sugery so I couldnt futher damage the spinal cord so after the mri results went straight into emergency surgery. I just know I was scared to death and my 3 kids were also. Iam only 31 and really didnt have much warning signs and systoms. But I just have a couple of questions for anyone who has had this done.I have days were I'am just doing wonderful, but there are some days were I'am so weak I just can't stand it esp in the legs. I keep calling the spine surgeon and he keeps telling me that on them days my nerve endings are waking up they have been dead for so long?? And I can just tell I'am starting to get on their nerves. And he tells me in a year it will all be better I will be a new person. Dont get me wrong I do not regret the surgery Dr. said if this had been 50 years ago I would have been in a wheelchair at 31. But can anyone out there tell me am I going to get better? It has been 3 months now!! Someone please help me on this one?? I thank you!!!

[denise dp]

Hi chris have you seen your dr. or called him because you should know this is a never ending story for a lot of us with disc problems. And if you are active you could injure another disc. I pray this is not the case but check it out just to be safe.
  Hi angelwings  I can only speak for myself it took more than a year for me to get better but you are 6 years older than I was when this all started for me and I was in alot of pain more on than off than you have been before I had my first surgery,the Dr. told after being in pain for soo long your brain begins to think there is pain even though the sorce is gone.thank the lord you don't have that problem. All I know is it takes time.Did you Dr. tell you not to lift anything weighing more than your dinner plate,or not to reach over your head. All this is important.I have a friend that is a nurse and she had the same surg. 6mo ago and still can't lift over 10lb. Well God bless you all.

[angelwings31]

Thank You for the post denise i really appreciate it. Its just aggrevating! He (dr) keeps telling me all in time. I will say iam alot better no pain praise GOD!!! I just keep praying over and over again. Well have a wonderful day and I thank you!!!

[wasstrongnowweak]

A related discussion, Diagnosised with Cervical Myelopathy was started.