Myelopathy before and after Cervical Corpectomy C5-C7 w/fusion- I am very scared

[Goodkarma5]

Thank you for any help. I feel I am losing it and am desperate for answers. I don't know what to do. I am 41 years old and was diagnosed with Compressive Cervical Myelopathy c5-c7 July 05. I should have been diagnosed at least two years ago as my Rheumotologist missed an MRI he ordered for the c-spine and I was told I was fine except for having Fibromyalgia ( which he doesn't really believe in). So I sufferd for another couple years, lost 20 lbs, weight only 90lbs from the downhill struggles. Pain, weakness, numbness, tingling schocks..you name it...everywhere. When I did get my diagnosis, I showed Myleopathy and surgery was my only option. So I had surgery Dec.1st - an Anterior Cervical Corpectomy w/fusion(c5-c7). Supposedly successful. Puzzles me that they say its successful because I am worse now than before the sugery and really scared.
My surgeon never even asked me to move my neck, only looked at xrays and dismissed my claims saying "you will never be normal and painfree and to get used to it." Mind you, I am not a complainer and always took pride in my work ( have been off since Aug05. I was worried about how I could return to work. My Neurologist has been more helpful and says that they hoped because of my age I would do better, but Myelopathy doesn't reverse itself and after a year I will know what is permanant damage. I am in the midst of a bunch of testing and return to him in a few weeks. I can't wait. I even went and got my  own MRI results because I am so sure something bad is happening and I don't know if I could be in serious trouble. I have such bad numbness tingling and burning I am too disoriented to walk around. My legs are weaker than ever. The shocks go right into my head arms, face, legs, My left shoulder is burning so bad almost all the time. I feel like my position is off and I can't seem to think straight.  
Here are my MRI results. could you help me dicipher it?
Findings - There is no evidence of Chiari Malformation. The spinal cord is of normal caliber. There are no abnormal signal intensities seen within the cord. Ther is mild to moderate sized disc protrusion at the C4-c5 level which is somewhat increased since the prior study (July 05).There has been interval fusion from the c5-c7 level. The c5 disc is remarkable.
While there are some paramagnetic effects from the surgery there does appear to be some posterior spurring at both the c5-6 and c6-7 levels. There is also bulging of the c6 disc, there is some effacement of the anterior thecal sac at both of these levels but no evidence of cord compression. There does appear to be an element of neural forminal stenosis at the c5-c6 and c6-7 levels on the left. Vertabral alignment is anatomical.
Impression: Mile to moderate sized central disc protrusion at the c4-5 level slightly more prominent that on the prior study./Staus post anterior fusion from the c5-c7 level with some posterior spurring noted at the c5-6 and c6-7 levels with some effacement of the anterior thecal sac along with an element of neural foraminal stenosis on the left at both c5-6 and c6-7 levels.
I am sorry this is so long. I just don't know if I need to get to the emregency room. I deal with this alot but I have gotten a great deal worse over the last week. Something is terribly wrong. If someone tells me this is the nature of Myelopathy, then ok, at least I can deal with knowing I wont end up paralyzed. I can just know what to expect. Also could degenative disc disease be that progressive? IS my surgey successful? I know they had to decompress my spine and that was the main reason for surgery. Still I feel like I have no control over my body anymore.
Thank you to whoever will write back. I think I am so used to dealing with the abnormal that I might not realize the seriosuness of what is happening now. Most people would be at the hospital long ago, but I seem to have lost faith that there is help.
Thank you so much. This means so much.

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

Without seeing the actual films, I cannot confirm the accuracy of teh report, and any interpretation of the report may be limited in this way

In general, posterior spurring means that there is 'spurs' of bone projecting from the vertebral body, a common finding in degenerative disc disease. They can cause pinching of a nerve root by narrowing the hole or 'foramina' that the nerve roots exit the spinal cord through. Pinching of the C5/6/7 nerve roots can cause sensory symptoms or loss in teh shoulder, or down the arm, and potentially some muscle weakness in teh shoulder or arm.
Effacement of the thecal sac means that a disc is narrowing the fluid space around thespinal cord but not compressing the spinal cord. Nothing strikes me as urgent about this MRI report. If there is still suspicion of spinal cord symptoms, a flexion-extension xray of the neck may show that there is significant narrowing of teh spinal canal, as while the MRI is done in a fixed position, there may be less space for the spinal cord in a flexed or extended position.

Unfortunately, this surgery does not gaurantee success, and is primaily done to prevent further neurological injury when evidence exists that neurological injury is occurring. If any of your symptoms were not due to spinal cord compression, then the surgery would not be expected to do anything for them. But this may mean that treatment targeted towards other sources of pain may help such as muscular or ligament pain.

Good luck

[NickyIsHere123]

Hi, I don't know if this helps, but I know about feeling "scared". I have two bruises on my inner thighs and have already convinced myself it is Leukimia. I think in a lot of ways, your main issue is your own brain. It is hard not to go to the darkest end of the earth where our lives are concerned. I know this morning I woke up and was worried. The thing is, is that as hard as it may seem, a lot of our fears come from things that are not there. Everybody is scared to die. But on the other hand, death is not all that bad compared to a life where you could never die and constantly worry. Well, with me being a Christian too, I know God will take care of me. He will take care of you too. I will pray today for you. In the meantime, I would get out of the house and get your mind off it all until you can get some answers.

Good Luck
Nicky

[Goodkarma5]

Thank you Nicky. I will pray for you too. In alot of ways, I think part of my problem is that I stopped worrying and knowing when to react to the point that I could do myself harm. And thats what scares me. Now that its so bad, I wonder if somehow I could have prevented it. Classic case of blame ourselves. My surgeon even forgot to tell me not to reach when I came home after surgery. I never knew what was ok to lift, etc. I think I pushed to hard because I have a no pain no gain attitude. Even my physical therapist comments that he enjoys having me as a patient because I assume pain is part of the recovery.

Do you have Leukemia? Is bruising like that part of your symptoms? I would be scared too. We wouldn't be human if we weren't.

Thank you for responding. I hope you feel better soon. I halso hope you have the nice weather we are having today. Its going to be 70 in Mich.  

I can't drive today, but will play with my pups and ferrets - thats my best meds. My husband is on a fishing trip so I will have some girl time.

Bless your heart for responding. I hope one of the Dr.s can tell me something about the MRI results. Sometimes knowing is the best thing for the mind. I hope you find answers too. Happy Easter!!

[novice23]

I have a spinal fusion in "99 from C-3 thru C-7.  I have not been able to return to work.  When I came out of surgery, I could not even feed myself.  My left arm  was dead weight for at least 6 months.  Even now when I walk, my left arm lays limp by my side.  It does not move back & forth unless I think about it and move it myself.  In 2001, I was told there was nothing else the surgeon could do for me and he discharge me.  I went to my family doctor in so much pain.  He started me on pain medicine.  I have been on the same dose since 2002.  Every time I have gone to the DR. since then, my main complaint has been just being so tired.  Finally 3 weeks ago, I had a 8-hour sleep pulse ox.  They found I have to have Oxygem when I sleep.  My oxygen level was staying at 75% for 5 to 6 hours a night.  It is no wonder I couldn't remember things and I left so bad.

The only reason I am telling you this is because the failure rate of this type of surgery is more than they tell you.   It is a very hard surgery to fight back from.  I recommend you to go see a massage therapist, chiropator, and an acupuncturist.  These professions give me more relief and it keeps you off the hard pain killers.  ARe you taking Neurontin?  Neurologist love that stuff and it is an awful drug.  I have a friend they gave that to in a pump in pretty high doses and they fried his brain.  I also took it and it really did nothing for me but give me bad reactions.

My heart really goes out to you for everything you are going through.  The shocks do go away after a while.

[Goodkarma5]

Dear Novice,

Thank you so much for your post. I feel so bad for you, and can only imagine after all you have been through how you must feel. I think the pain and everything that comes with this is just one part of the illness, the other part is an endless circle of getting answers, Dr.s not being clear, and some walking away ( like you r surgeon and mine too). This isn't about thier egos, its about our lives. I am still scocked I was released by my surgeon as well.
I do feel worse than before my surgery and if I don't get better I cannot return to work either. Now I have to get my Dr.s to stand behind me so I can get disability. Another nightmare.
Thank you for telling me about Neurontin. I took it all weekend because I was so bad and it gave me sever flu symtoms and I felt like crying at the drop of a hat. Made me way too emotional and Lord know I don't need that.
Can I ask why your fusion was done? I keep hearing that I should have done better because I am 41. Again, this is all to confusing. Its all just sinking in all the things I will never do again.
Can you share more? Thank you so much...goodkaram5

[WVProud]

Hey Goodkarma5:

I am 62 and just had the same operation in May, 2005. I was in more pain after the surgery and thought I had really made a mistake.

Because of pain from my second hip replacement in Dec. 2005, just last week, I noticed that the neck pain is 99% gone, movement is good even after fusion.

I was foolish and did not take physical therapy for my neck and I think that is why it took 11 months and 3 weeks to feel as good as it does today. I do notice if I sleep on too high pillow that my neck hurts or if I sit and look at TV with my neck turned then the old pain comes back. I am starting to have some pain in my middle finger which I understand can happen after neck surgery.

So stay strong, it will get better or it will get worse because nothing stays the same. At your age it will get better but remember, mine took almost 1 year.  Good luck!

[usscottyb]

I just had my surgey yesterday 5-30-06. Fusion c6-7.
I'm a 39 year old male in good health.
I was i soo much pain before i had it.
Now mind you still in pain but not as much.
I had it done in Rochester New York.
Dr. Witback. Today i can fell my left arm & shoulder.
Lost most pain in my left arm after i woke up from surgey.
Right now my throat hurst a little along with the front of my neck.. Other than that i fell ALOT better than before.
Good luck to you.. My prayers goes out too all.
ScottyB.

[GingerV13]

I had an MRI and it states that I also have herniated or bulging discs from c3-c7.  There is narrowing of the neural foramin. This Med forum is very helpful to  me because I have been feeling alone and frightened not to mention, angry.  I woke up like this after  knee surgery for a cartilage tear.  Something happened to me on the operating table although no one will tell me.  I also no longer have the normal cervical lordosis in my neck.  I was told by my orthopedist after and xray that my neck is now straight.  Lordosis means that it is supposed to slant.  He also said that "We may have done something to you on the table".  All I do know is that I can't work or drive and the pain in my neck and hands is awful.  I also feel like there are things moving around under the skin at the top of my neck. I am in a terrible situation because I have 6 children and the loss of income is devistating. Thanks for this forum, I needed to vent.

[hit man]

Hi....I just read your story and others comments and I can only say, man, my heart goes out to you.  I know how you feel.  People who haven't had these issues have no idea what it feels like because we look normal, right???

I'm not a Dr. or anything.  I am recovering from a similar situation.  Fortunately, for me, I have experienced good results to date.  I am very athletic, 43 years of age and a male.  I've worked out avidly my entire life since I was 15.  All sports.  I woke up  in April 05 for no reason with a numb right leg, numb upper left torso, lots of twitching all over my body, and tingling in my left hand and arm.  At first I felt it was just a pinched nerve but after a month I knew something was not right.  My neurologist initially thought my symptoms were MS or Lou Gehrig's disease and I was a basketcase.  He immediately ordered MRI's from my brain to my lumbar and everything looked good except I had spinal stenosis at C4C5 (big time) and more stenosis at C5C6 and C6C7.   He sent me to a top brain and spine surgeon in town. My surgeon gave me options and we decided to take the conservative route so I could contintue sports and I entered a trial study where I had an artificial titanium disc replacement at C4C5 through Medtronic.  I was very shaky at first and could barely walk for a few weeks.  After a month I was back at work.  Within 2 months I was back lifting weights and playing non contact sports.  He told me I was good to go and to go ahead a push it.  I did but I noticed that I didn't have good control of my right leg and I still had numbness.  I kept going back month after month and he kept telliing me within a year I would be good as gold.  Well.....things got worse.  I got so tired and had problems even walking up a flight or stairs and gave up active sports.  I went back to my neurologist and he told me I definitely still had problems.  He ordered a new set of cervical MRI's.  Results showed that things had worsened at C5C6 and C6C7.  

I went back and showed the MRI results to my surgeon...he determined that, yes, I was more stenotic.  The artificial disc had corrected things at C4C5, but the 2 levels below had worsened.  I wanted more artificial discs but the FDA does not allow more than one in the cervical area.  We decided to do a corpectomy at C5C6 and C6C7.  Bone graft from my iliac (hip).  Just had it done on June 22/06.  Spent 5 days in the hospital and it was a very painful and challenging few days.  I was real upset and worried but after a few days I started feeling better.  I am in a full neck collar and I wear a bone growth stimulator a minimum of 4 hours a day.  Its now July 2/06 and I have to say.....I am feeling great!.  All numbness is completely gone.  No pain in my neck and my legs feel re-engergized.  Everything feels fantastic.  the Neck collar is uncomfortable and my Dr. had told me not to work for a month, chill, and don't lift anything or drive for 6 weeks.  I am sticking with the plan and reading your story comfirmed me not too push anything so (thank you!!!).  My tendencies, like yours, are to push it.  

I feel 99% sure by the way my body feels that this corpectomy did the trick.  I'm ecstatic with the way I feel.  Mr surgeon has told me it went very well and I should be able to do sports again and live a pain free normal life for years to come.  Man, I guess I am just blessed and I believe I had a great surgeon and well, just very lucky.

I wanted to give you my Dr.s name.  Dr. Jeffrey Cattorini from Dallas/Plano Texas.  If i was you....I would go and visit with him.  He's the best.  Highly recommended to me by several specialists in Dallas.  Have you had a mylogram????  They are very painful but I forgot to mention that both times my MRI's were a little unclear and it took doing the mylogram's to get very accurate images in order to make the decisions we made.

Like I said...I'm not a Dr. but I think you should not accept the way you are feeling.  Something is not right and I think your case can be re-examined by another top surgeon (Dr. Cattorini).  Tell him Brad HIcks sent you.  Mine was a very unusual case and he knows me very well.  I would not give up.  Its not in your head as others have suggested.  Don't give up....do whatever it takes.  You can fix it with proper medical care.

Anyhow......I didn't mean to tell you my life story or anything....I just wanted you to know that I spent 14 months feeling miserable just as you have and I did get successful relief.  As soon as I get this collar off (estimated 5 weeks) I am going to be back to my old self.  I can just feel it.  Everything feels good.  If you want.....contact me.....my direct email is ***@****.  I dont' mind at all.

Lastly....and not to get too cheesy.  You and I know that if you don't feel well, life just isn't that good.  You need to stop everything and get another opinion or two or three.  Don't accept feeling the way you do because life is short.  

Best of luck and I am sending out some positive thoughts your way.  I hope you can cure your situation and feel good again.  All the best!!!

Brad Hicks

[hit man]

Hi....I just read your story and others comments and I can only say, man, my heart goes out to you.  I know how you feel.  People who haven't had these issues have no idea what it feels like because we look normal, right???

I'm not a Dr. or anything.  I am recovering from a similar situation.  Fortunately, for me, I have experienced good results to date.  I am very athletic, 43 years of age and a male.  I've worked out avidly my entire life since I was 15.  All sports.  I woke up  in April 05 for no reason with a numb right leg, numb upper left torso, lots of twitching all over my body, and tingling in my left hand and arm.  At first I felt it was just a pinched nerve but after a month I knew something was not right.  My neurologist initially thought my symptoms were MS or Lou Gehrig's disease and I was a basketcase.  He immediately ordered MRI's from my brain to my lumbar and everything looked good except I had spinal stenosis at C4C5 (big time) and more stenosis at C5C6 and C6C7.   He sent me to a top brain and spine surgeon in town. My surgeon gave me options and we decided to take the conservative route so I could contintue sports and I entered a trial study where I had an artificial titanium disc replacement at C4C5 through Medtronic.  I was very shaky at first and could barely walk for a few weeks.  After a month I was back at work.  Within 2 months I was back lifting weights and playing non contact sports.  He told me I was good to go and to go ahead a push it.  I did but I noticed that I didn't have good control of my right leg and I still had numbness.  I kept going back month after month and he kept telliing me within a year I would be good as gold.  Well.....things got worse.  I got so tired and had problems even walking up a flight or stairs and gave up active sports.  I went back to my neurologist and he told me I definitely still had problems.  He ordered a new set of cervical MRI's.  Results showed that things had worsened at C5C6 and C6C7.  

I went back and showed the MRI results to my surgeon...he determined that, yes, I was more stenotic.  The artificial disc had corrected things at C4C5, but the 2 levels below had worsened.  I wanted more artificial discs but the FDA does not allow more than one in the cervical area.  We decided to do a corpectomy at C5C6 and C6C7.  Bone graft from my iliac (hip).  Just had it done on June 22/06.  Spent 5 days in the hospital and it was a very painful and challenging few days.  I was real upset and worried but after a few days I started feeling better.  I am in a full neck collar and I wear a bone growth stimulator a minimum of 4 hours a day.  Its now July 2/06 and I have to say.....I am feeling great!.  All numbness is completely gone.  No pain in my neck and my legs feel re-engergized.  Everything feels fantastic.  the Neck collar is uncomfortable and my Dr. had told me not to work for a month, chill, and don't lift anything or drive for 6 weeks.  I am sticking with the plan and reading your story comfirmed me not too push anything so (thank you!!!).  My tendencies, like yours, are to push it.  

I feel 99% sure by the way my body feels that this corpectomy did the trick.  I'm ecstatic with the way I feel.  Mr surgeon has told me it went very well and I should be able to do sports again and live a pain free normal life for years to come.  Man, I guess I am just blessed and I believe I had a great surgeon and well, just very lucky.

I wanted to give you my Dr.s name.  Dr. Jeffrey Cattorini from Dallas/Plano Texas.  If i was you....I would go and visit with him.  He's the best.  Highly recommended to me by several specialists in Dallas.  Have you had a mylogram????  They are very painful but I forgot to mention that both times my MRI's were a little unclear and it took doing the mylogram's to get very accurate images in order to make the decisions we made.

Like I said...I'm not a Dr. but I think you should not accept the way you are feeling.  Something is not right and I think your case can be re-examined by another top surgeon (Dr. Cattorini).  Tell him Brad HIcks sent you.  Mine was a very unusual case and he knows me very well.  I would not give up.  Its not in your head as others have suggested.  Don't give up....do whatever it takes.  You can fix it with proper medical care.

Anyhow......I didn't mean to tell you my life story or anything....I just wanted you to know that I spent 14 months feeling miserable just as you have and I did get successful relief.  As soon as I get this collar off (estimated 5 weeks) I am going to be back to my old self.  I can just feel it.  Everything feels good.  If you want.....contact me.....my direct email is ***@****.  I dont' mind at all.

Lastly....and not to get too cheesy.  You and I know that if you don't feel well, life just isn't that good.  You need to stop everything and get another opinion or two or three.  Don't accept feeling the way you do because life is short.  

Best of luck and I am sending out some positive thoughts your way.  I hope you can cure your situation and feel good again.  All the best!!!

Brad Hicks

[hit man]

Hi....I just read your story and others comments and I can only say, man, my heart goes out to you.  I know how you feel.  People who haven't had these issues have no idea what it feels like because we look normal, right???

I'm not a Dr. or anything.  I am recovering from a similar situation.  Fortunately, for me, I have experienced good results to date.  I am very athletic, 43 years of age and a male.  I've worked out avidly my entire life since I was 15.  All sports.  I woke up  in April 05 for no reason with a numb right leg, numb upper left torso, lots of twitching all over my body, and tingling in my left hand and arm.  At first I felt it was just a pinched nerve but after a month I knew something was not right.  My neurologist initially thought my symptoms were MS or Lou Gehrig's disease and I was a basketcase.  He immediately ordered MRI's from my brain to my lumbar and everything looked good except I had spinal stenosis at C4C5 (big time) and more stenosis at C5C6 and C6C7.   He sent me to a top brain and spine surgeon in town. My surgeon gave me options and we decided to take the conservative route so I could contintue sports and I entered a trial study where I had an artificial titanium disc replacement at C4C5 through Medtronic.  I was very shaky at first and could barely walk for a few weeks.  After a month I was back at work.  Within 2 months I was back lifting weights and playing non contact sports.  He told me I was good to go and to go ahead a push it.  I did but I noticed that I didn't have good control of my right leg and I still had numbness.  I kept going back month after month and he kept telliing me within a year I would be good as gold.  Well.....things got worse.  I got so tired and had problems even walking up a flight or stairs and gave up active sports.  I went back to my neurologist and he told me I definitely still had problems.  He ordered a new set of cervical MRI's.  Results showed that things had worsened at C5C6 and C6C7.  

I went back and showed the MRI results to my surgeon...he determined that, yes, I was more stenotic.  The artificial disc had corrected things at C4C5, but the 2 levels below had worsened.  I wanted more artificial discs but the FDA does not allow more than one in the cervical area.  We decided to do a corpectomy at C5C6 and C6C7.  Bone graft from my iliac (hip).  Just had it done on June 22/06.  Spent 5 days in the hospital and it was a very painful and challenging few days.  I was real upset and worried but after a few days I started feeling better.  I am in a full neck collar and I wear a bone growth stimulator a minimum of 4 hours a day.  Its now July 2/06 and I have to say.....I am feeling great!.  All numbness is completely gone.  No pain in my neck and my legs feel re-engergized.  Everything feels fantastic.  the Neck collar is uncomfortable and my Dr. had told me not to work for a month, chill, and don't lift anything or drive for 6 weeks.  I am sticking with the plan and reading your story comfirmed me not too push anything so (thank you!!!).  My tendencies, like yours, are to push it.  

I feel 99% sure by the way my body feels that this corpectomy did the trick.  I'm ecstatic with the way I feel.  Mr surgeon has told me it went very well and I should be able to do sports again and live a pain free normal life for years to come.  Man, I guess I am just blessed and I believe I had a great surgeon and well, just very lucky.

I wanted to give you my Dr.s name.  Dr. Jeffrey Cattorini from Dallas/Plano Texas.  If i was you....I would go and visit with him.  He's the best.  Highly recommended to me by several specialists in Dallas.  Have you had a mylogram????  They are very painful but I forgot to mention that both times my MRI's were a little unclear and it took doing the mylogram's to get very accurate images in order to make the decisions we made.

Like I said...I'm not a Dr. but I think you should not accept the way you are feeling.  Something is not right and I think your case can be re-examined by another top surgeon (Dr. Cattorini).  Tell him Brad HIcks sent you.  Mine was a very unusual case and he knows me very well.  I would not give up.  Its not in your head as others have suggested.  Don't give up....do whatever it takes.  You can fix it with proper medical care.

Anyhow......I didn't mean to tell you my life story or anything....I just wanted you to know that I spent 14 months feeling miserable just as you have and I did get successful relief.  As soon as I get this collar off (estimated 5 weeks) I am going to be back to my old self.  I can just feel it.  Everything feels good.  If you want.....contact me.....my direct email is ***@****.  I dont' mind at all.

Lastly....and not to get too cheesy.  You and I know that if you don't feel well, life just isn't that good.  You need to stop everything and get another opinion or two or three.  Don't accept feeling the way you do because life is short.  

Best of luck and I am sending out some positive thoughts your way.  I hope you can cure your situation and feel good again.  All the best!!!

Brad Hicks