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Old 02-13-2009, 11:08 AM   #1
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cervical spine deterioration

Having had lumbar and cervical spine 'difficulties' life-long, the cervical spine became chronic at age 44 with a neuro surgeon telling me I have the neck of a 95 year old. It has been 5 years of misery and 2 MRI with much information involving natural and osteophytic stenosis(foraminal narrowing), dessicated discs, cord compression, reverse lordosis etc. I have been told that being a high risk (for quadriplegia) surgery, nothing can be done until paralysis is imminent from the cord compression, as there is nothing to lose at that point. Meantime, I endure much pain and worsening symptoms and do not appreciate knowing that the nerve damage is irreversible.
Has anyone been through this and have you found that it progresses rapidly?

Last edited by trychocolate; 02-13-2009 at 11:09 AM. Reason: mispell

 
Old 02-15-2009, 07:29 AM   #2
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Re: cervical spine deterioration

just wondering if you have obtained more than just one opinion on your situation? i too had some very very scarey stuff going on at the cord level with three seperate neurosurgeons giving all kinds of differing views on just what this ment for me risk wise and what could be done. you just need to be seeking out the most experienced type of neurosurgeons who deal with compression and whever else is going on up there. just what does your MRI state about the hard findings in that summary at the very end?


trust me when i say that not all neurosurgeons are created equal. not by a long shot. what any NS tells you about being able to actually fix something is kind of set by many ways by his or her own training,experience and limitations. other NSs may see your case very differently. i cannot imagine waiting until you are actually paralyzed to actually 'do' anything to try and remove that real risk from even occuring. if you could please post that summary of your most recent MRI or one that truely explains the actual extent of involvement of your cord,it would help me to help you. you just may not actually have to live thru that particular outcome,ya know? alot depends upon the expertise of that neurosurgeon. honestly,that prognosis really sounds like a cop out,you know what i mean? you just may have options here that you are not actually aware of yet becasue that NS doesn't go there or do that kind of thing(does not want to take on that level of liability?)? 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.

 
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Old 02-15-2009, 08:48 AM   #3
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Re: cervical spine deterioration

Trychoc.....

I, too, have had both.....cervical and lumbar issues. Had fusions on both and presently recovering from a lumbar fusion.

I so agree with what Feelbad said. I read your post over and over trying to figure out how to reply but feelbad is right on with what she said. My cervical issues was worst than my lumbar issues by far. My spinal cord was affected too. I did indeed have a fusion and let me add....I AM FOREVER grateful to be out of that agony. I had my cervical fusion 9-10 years ago and have not had 1 problem since. Maybe there is help out there as Feelbad says. BTW Feelbad, great reply. Feelbad offered good information.....and I agree! Good luck to you and I am so sorry you hurt so bad. I donot forget the pain I was in and I didnt even know how bad I DID hurt till I felt better

LYNN

 
Old 02-15-2009, 09:14 AM   #4
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Re: cervical spine deterioration

Thank you so much for your reply; I appreciate your consideration of MRI findings from 2007, even though there has been substantial deterioration. It takes 3-6 months to get an MRI here unless you pay cash and up to one year for specialists. GP says he sends me to "the best" so I am ready to see others, instead of not questioning such comments.

Last MRI was full spine and brain as symptoms mimic brain/spine: loss of depth perception in arms and legs, loss of feeling except heat and cold, extreme clumsiness, gradual right side weakness, upper extremity reflexes worse on left. So I will try to summerize so you get a bigger picture. Maybe it's not all that bad, but all combined is causing all the problems. What do you think:

5-mm anterolisthesis of L5 on S1 likely due to bilateral spondylolysis. Degenerative endplate signal changes. 1.3 cm high T2 and likely cystic focus within left femoral head. Mulitilevel marginal osteophytes mid-lower cervical spine, mid-thoracic region and lumbar. Annular tear at L4-L5, disc desiccation at L4-L5 and L5-S1.
Two Tarlov's cysts at S2, one right paracentral, measuring 1.4 cm and left paracentral, measuring .6 cm.
C4-C5: mild central and left paracentral disc bulging, mild central stenosis. Encroachment and minimal mass effect antero-left lateral aspect of thecal sac.
C5-C6: moderate left mild right foraminal narrowing secondary to uncovertebral joint hypertrophy. mild disc bulging, mild stenosis with mild mass effect on cord.
C6-C7: minimal left foraminal narrowing, uncovertebral joint hypertrophy.
L4-L5: mild disc bulge, mild central stenosis.

I hope I am permitted to post all that; I thought you might need more info.

Once again, I appreciate your opinion and any information/help. Your comment regarding "copout" is most likely dead on. I seem to live in critical care country. Would US doctor tackle this,

Curious up north.

 
Old 02-15-2009, 06:32 PM   #5
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Re: cervical spine deterioration

Hi Trychoc......

Was 2007 your last MRI? If so....I feel sure you need another MRI by now. Lots could have changed for you since 2007. You are in Canada, right? I am sure your medical care is different than the US < I am sure you know that> Is that the last time you have seen a specialist? If so, maybe you will see a new doc this time.

I am sure Feelbad can read your MRI better than myself. From what I read of it though, you for sure have cervical and lumbar issues which you had said. But, from what I gather on your cervical results of the MRI. it is not too bad to be surgically corrected. I may be wrong. I am certainly not a doc but it doesnt seem so bad that it cant be fixed. Feelbad maybe can read this MRI better..... and to answer your question as far as would a US doc tackle your problem, I feel sure that a doc here in the US could indeed help you.

I agree with her though as far as that doc using what he told you as a cop out.....hopefully if you are going back to your clinic or where ever you go in Canada, you will get better care for your self. Good luck and hope you find relief,

LYNN

 
Old 02-15-2009, 08:48 PM   #6
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Re: cervical spine deterioration

Thanks for your input. Doc had said high risk because of the natural stenosis-9mm spinal canal instead of a normal 11mm. The space is smaller to work in. So people with this problem feel signs and symptoms sooner. Made sense at the time. Maybe you already knew this? He also said he could get me a referral to the States. Imagine that.
But you are right, I should get things updated; one of my biggest complaints is being unable to hold my head straight (erect) while sitting and can't do it for long standing. (trying chocolate, doesn't help!)
Thanks Lynn

 
Old 02-16-2009, 08:06 AM   #7
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Re: cervical spine deterioration

hey,trying chocolate NEVER hurts.lol. honestly? i really cannot see the BIG problem here at all. as far as those tarlovs you have down below,well i am not really up on those(i do know they have their own specific issues),but what in gods name is this man thinking about the c spine issues???? this is NOT as bad as you may think and the MM loss is not all that huge either. i was right,cop out. this was very obviously WAYYYY above this particular surgeons head. as far as going to the states,well geez if you can, go there. i had my spinal cord surgery done at the university of MN,i just happened to live very close to it. you most definitely,if anyone ever needed one,need that second opinion from a neruosurgeon who just sees alot of cord compromise. believe me when i tell you,this is not as bad as you were told. people with only about 5-7mm left in there cords have had very successful relief of their compression without being turned into a quad.
i really don't get his reply about the less space to work in BS either since it is not like we are talking only 5mms,here ya know,just a couple of tiny increments that any good NS could safely wok within with no true issues(believe me,its just not that huge of loss). once that stenosis gets removed,everything else just gets a bit less risky and easier to complete during any surgery in the areas we are talking with you.

i do know that living in canada when it comes to healthcare really sucks,but there just HAS to be a really good knowledgable and most importantly EXPERIENCED neurosurgeon you could seek out for a real true eval of what it would take to simply fix that area and lessen your symptoms at least up above(and take any real true risk of quad paralyzation away). like i said,the tarlovs,i really don;t know too much about,but a good knowledgable neuro would. and this IS wayyy down into your sacrum as well at least not up in your c spine.

from what i read,and you DO need that updated MRI as someone else mentioned just to compare progression from 07 to now since alot can change over even a shorter time period than you are talking between MRIs,this would be a fairly easy fix with the right neurosurgeon,really.

the bigger problem you face with the longer you wait to relieve compression is the higher risk of more permanent damage occuring to the cord. i have NO FREAKING clue as to why this so called medical professional would not have simply referred you off to someone who DID have that level of expertise you need here just to relieve the problems. god this is really sick. just find out what you can about the best neurosurgeons in your area,if you cannot find the right NS for this job up there,tho cannot imagine that canada doesn't have some wonderfully talented and experienced types of neurosurgeons that you need here,go with the states.

my absolute best most knowleadgable opinion i got from my three(stooges) was at the U of MN here in MN. unfortuently my wonderfully experienced head of neurosurgery retired on me back in 06,really bummed me out since he was the only doc who understood the 'new me" post SCI.

but if you live near ANY university type teaching hospital,his truely would be the very best place to find the right people to tackle your particular issues(and the best info on what those tarlovs mean too). unfortunetly,when people keeop getting 'we cannot help you' from surgeon after surgeon,this is the place that they seek out as the 'last resort' type of opinion? in many cases,this IS the place to go,just because they DO see the rarer and more unusual types of problems there,they are much much more experienced at doing the more risky types of surgerys there too. and one BIG thing here too that i was not aware of is what intraoperative monitoring is or does for your own safety during any really risky type of spinal surgery. since my actual cord was going to be cut into and some globby group of blood vessels were going to be removed,i was scared out of my freaking mind that they were just going to go in,do what they had to do and i would be left to deal with the aftermath. that was befroe my nS explained the intra monitoring they do during the surgery. your motor and sensory is constantly monitored by one doc whos job it is to sit in front of this monitor after hooking up certain areas to electordes that simply detect changes in nerve status. the surgeon will kind of 'test" an area and ask the neurophysiatrist(this is the type of specialist who does this) if any changes were seen. if not,they go ahead,if there was,they try and different angle. it is much more involved than that but you get the basics i think? this is for YPUR protection and to reduce any risks of doing permananet harm to you during the more involved with the cord type surgeries. that intra operative monitoring made ME at least feel better knowing that one specialist was going to 'just' be looking out for all my nerves during this very risky procedure. but believe me,the overall risks in fixing what you actually have there as of 07,are much much less than i was dealing with.

you just REALLY need to do two things here for now. obtain that comparative MRI study,then seek out other much more experienced and knowledgable opinions from the right neurosurgeons for your job. what that idiot neuro you saw told you,honestly was soo wrong on his part. NO patient should have to wait til further damage gets done to the point of quadraplegia to get the proper help BEFORE that even occurs. i really do feel for you having to deal with hearing that crap from someone who obviously had no real true working understanding or experience in just going into the canal.

there just ARE much much better more experienced neurosurgeons out there that CAN help with this. the sooner this area gets relieved the better. like i mentioned before? not all neurosurgeons are created equal. just keep pushing til you find the right one to help you here with this,he or she IS out there. i was forced to do what you are now,and believe me,it was soo worth it just knowing i WAS in the best hands possible for my particular surgery. good luck to you with this and PLEASE keep us all 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 02-18-2009, 01:21 PM   #8
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Re: cervical spine deterioration

thanks for all that info, feelbad. After I read your post Monday, I though it was too bad it was a holiday and the clinic problably wasn't taking appointments (emerg only), as I wanted to get things rolling again. Not too many minutes roll by and the clinic phones to make an appointment; this is highly unusual as I have had no tests done for ages so no apparent reason for this. Last time I talked to dr, he was lining me up with a neurophysiologist--whatever that it, many months ago.
I was stunned at the timing, and finally phoned back today to ask why. Nurse says to get lined up for an ECG. That's right, I get a call to make an appointment 'regarding my cervical spine issues', to be made before March 10 please, and for an ECG, of all things. Anyway, the appointment is next week and will just have to wait.
I have also done some research on CPS as I fear this is the area I may be into and am still annoyed that the nerve damage/numbness/pain is permanent, surgery or no surgery. But I would like to be able to do more than one thing in a day without having to lay down for the rest of it. Looks like a gamble.
Anyway, I appreciate you posting your thoughts and experiences. I need the help.
choc

Last edited by trychocolate; 02-18-2009 at 01:24 PM. Reason: misspell, word missing

 
Old 02-19-2009, 07:04 AM   #9
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Re: cervical spine deterioration

just wondering what exactly you were referring to with the letters "CPS"? there are just so many abbreviations for certain things it can get confusing,ya know? tho having the EMG,this is all looking for the very same thing,actual nerve flow impairment. tho it may or may not actually even be there,but you still can have very pronounced symptoms. i did with my herniated c6-7 but had a perfectly normal EMG. that is becasue my nerve flow was not being 'consistantly impaired or impinged. it was intermittant so it did not show as abnormal. the best way to really "see' everything at this point would be with what has been mentioned before,that comparative study MRI being done. i would just keep pushing whoever you have to to actually get THAT one MRI done. you just really do need it right now. just do not be suprised if that nerve test comes up "normal' it doesn;t mean you do not have issues that need to be fixed. trust me. please keep us posted hon. 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 02-19-2009, 08:25 AM   #10
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Re: cervical spine deterioration

feelbad--nope, the abbreviation was right: an ECG for the heart! I clarified with the gal and said, 'oh, that's the one where they put the electrodes on your head, right?' she said no, an ECG is for checkg the heart. That is why the surprise.
Now I am confused as I think you are talking about the one where the dr sits at a machine and shoots electricity thru different nerves and charts responses? I had that done a few years ago. The gal I was talking to made so many 'minor' mistakes during the phonecall that if you told me she was on a beach somewhere in Cancun answering phones, I would have believed it.
CPS: Central Pain Syndrome>looks like it means permanent nerve damage and pain that is untreatable with meds. or anything else. Had seen it on one of the posts and looked it up. (i am often in the dark about some of these abbreviations)
I have to say, there are some real horror stories on these posts, along with the successes with spine surgery. I think I can take alot of pain and only get absolute, immobilizing spasm when I force myself to sit and keep head errect in a chair, or sometimes it does it on it's own while standing, so I just lay down (again) until feeling human again. I haven't given up on lifting light weights and tell people I do this because I want to be able to feed myself and maintain as much mobility as possible. It adds further wear and tear for sure tho.
I am trying not to be 'needy' but thanks for answering my post and call me,
chicken choc, I guess

 
Old 02-19-2009, 05:56 PM   #11
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Re: cervical spine deterioration

Hi there my Canadian chocolate lover(I grew up in Montreal). And hi to Feelbad as well.

I'm new here and just posted yesterday about facing my 3rd cervical spine surgery. I think I can answer a few questions for both of you. Yes, in Canada they call an EKG an ECG...heart test. That's the easy part.

You have what is known as cervical spondylosis, a slow narrowing of the cervical spine due to stenosis, disk deterioration and OA. When you start to get numb it becomes spondylomylopathy.

I had surgery for this 2 1/2 years ago. I was down to 6mm. and losing my ability to walk and use my hands. I saw 2 neurosurgeons. The first thought I should wait even longer as I had a 3% chance of coming out of surgery a quad, same as if I got into a car accident and it cut off the blood supply to my cord. The second said we need to operate NOW. He suggested a new surgery called a laminaplasty where no fusion is done. The bone over the back of the spine is removed, thinned down then replaced with bone sutures and held open with a bone graft. It literally creates a new spinal canal for the cord without exposing the cord to damage like a laminectomy does. There are several variations on the surgery as to whether the bone graft is on the side or in the middle but my doc decided to do the one he invented. I knew I had the right doc.

I woke up from surgery with no numbness and able to walk and use my hands. I was back to work in under 3 weeks.

Some stats. Surgery to relieve numbness has about a 70% success rate whereas surgery to get rid of pain has about a 30% success rate. But when you are facing cord compression and eventual paralysis, who cares! You just want to stop the progression.

I don't know where you are in Canada(it's a really big country)but I'd be glad to give you the name of my doc in Boston, Massachusetts if you are near the east coast. There are very few docs who do this new surgery but it is amazing. Your doc's doom and gloom diagnosis is a lot of baloney. He needs to join the 21st century.

We aren't supposed to post URL's here but I can send you a site that has a listing of good docs for spine surgery. My doc is on the editorial board and a site founder so I trust the site.

Hope you warm up soon....if you're in one the colder areas of the "true north strong and free"!

Jenny

 
Old 02-19-2009, 07:30 PM   #12
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Re: cervical spine deterioration

I read your amazing story Jenny. It reminded me of all the alternate therapies I tried over the years and the comments of what the heck happened to me when I was in vitro/born/a baby....and on...and on and I have no information. I did ask mom years ago (she is gone now) and she abruptly said she didn't remember anything with a humpf. Out of all of them, shaken baby syndrome made the most sense as I had seizures for many years as well. Just a theory.
I am new here too and am not wanting to break any rules; I have asked some questions on another thread which may have been the wrong route. Hope I can ask you:
Did you lose your sense of feeling over most of your body, especially hands and feet, except for heat and cold? Did you lose 'spacial' awareness and depth perception? Couldn't let go of glasses or coffee mugs for several seconds? Loss of grip strength, dropping things as you place them? I used to get shocks mostly in hands and feet but sometimes I'd get what felt like a 'fireball' running thru that ended in a foot, but over time that seemed to deaden with the loss of feeling.
Even though my appointment isn't until Monday evening, I have been particularly in a bad way this week, I feel my body really stiffening with every move I make felt in the neck and using hands is a total chore. Quite a long way from the 'busy bee' of yore. I feel really, really old.
I always try to ask myself if it is really worse lately or if emotionally I am sick of 6 years of misery. I am still able to accomplish what I have to around my home (except shovelling has been removed from my list), by keeping my head slightly tucked; I try not to talk to people taller than myself to avoid pinching nerves or discs or whatever. Can you imagine a doctor listening to all this stuff and nada...
I will keep you in mind for referrals but not an affordable option for most here. I really do think the province should kick in for necessary surgeries abroad, or wherever they will take us. India?
I appreciate all the information and hope to have as much as I can get on these posts for my appointment next week.
Thanks alot Jenny,
hard choc

 
Old 02-20-2009, 03:29 PM   #13
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Re: cervical spine deterioration

My early symptoms were actually picked up by my knee doc. I went for my annual check for the knee repacements and told him how stiff my legs were. He did a really thorough exam then asked me if I had any neck problems. I said no, not that I was aware of. He said it sure sounded to him like cervical spondylosis.

Fast forward 1 year and here I am in my rheumatologist's office complaining of legs that got so stiff as the day went by that I could only walk in baby steps by the time I got home from work. He didn't know what it was either as I had no neck problems.

In the meantime, yes, I was becoming very clumsy, dropping plates and mugs and all sorts of stuff with no notice. The fingers just opened. Rheumy said it was the arthritis. And typing? Forget it. Couldn't control the pressure on keys and would look up to see an entire line of Z's or something. I even had surgery on both shoulders for distal clavicle excision on the AC joints to relieve the pain in my shoulders. It didn't help very much but even the shoulder surgeon checked my neck and said it seems to be fine.

I had headaches and numb or burning toes.....chocked up to peripheral neuropathy from my diabetes. I don't remember any thing spatial but I do remember waking up at night and my whole body would be buzzing like it was numb.

It was snow shoveling that finally did it. I picked up one shovel full too many and my whole body went numb. I put it down and went inside knowing something was very wrong. I started getting pain down my left arm and went to the rheumy. He figured I might have ruptured a disk shoveling. Boy was he surprised when the results of the MRI came in. Three ruptured disks, multiple levels of cord compression, osteophytes impinging nerves all over the place and no pain. I was slowly becoming paralyzed.

Since the worst of the compression was at C6, it was affecting me from the waist down and my hands and wrists. If you severe your cord at C6 your are a paralyzed from the waist down and hands and wrists. I was getting there. There actually is a syndrome known as Clumsy Hand Syndrome according to my neuro. What I had noticed was that it no longer hurt to test myself for my diabetes.

Believe it or not, the person who helped me the most was my neurologist who moved her practice to Calgary from Boston. Her hubby is a neuropathologist and took a position heading the dept. at the U. of Calgary. So if you're in that area, I can give you one person to see.

But you should be able to find a good neurosurgeon where ever you are. You just need to head for a facility that is connected with a medical school. I had to do the same thing. I'm smack dab in the middle of Boston and NYC and you'd think I'd find good docs here but no, I had to go to a Harvard affiliated hospital to find a really good spine doc.

But here's the trick with spine docs. There is no such specialty. Both orthos and neurosurgeons do spine surgery. Neurosurgeons learn it as part of their training then have to go for an additional residency. Orthos just go for the extra residency. That's why I like neurosurgeons better. More training. They are in the process of developing testing for board certification. But right now, you go see a doc who advertises he/she does spine surgery and you don't know if they do 1 a month or 20 a week. So you need to ask. My doc spends 4 days a week in the OR doing nothing but spine surgery. That's why it takes so long to get to see him. He only sees patients 1 day a week. So you need to research and ask a lot of questions.

But it sounds as if you have time to do that. I'm here to help if you need or want it. I think I left it that I can be emailed through my profile. If not, I'll change it. We aren't supposed to post other websites but I did on an early post and you might have seen it as they left it in. It's a great website on spines.

Any questions, ask away. I'm just sitting here waiting to find out what they will do next.....and I kinda don't want to know!

Ex-Canuck..............Jenny

 
Old 06-03-2009, 11:12 PM   #14
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Re: cervical spine deterioration

Hi, Jenny. It's late, so I won't get into my story at length right now, but I am new to the site and just read your post about having a laminaplasty in Boston with a neurosurgeon. My first surgical consult was at the Boston Spine Group with Dr. Jenis and he recommended taking no aggressive measures at this point. My neurologist is in disagreement. I have tried getting an appt. w/Eric Woodard (neurosurgeon at NE Baptist) but he isn't taking new patients until November. In the meantime, I have an appt. set up next week with an orthopedic surgeon in the same practice, Dr. David Kim. He comes highly recommended, but is not a neuro. I have an appt. in July w/another Neuro at NE Baptist, but am hoping Dr. Kim will be okay (Harvard trained and supposedly brilliant).

My c5/c6 is at 6.3 cm -- tight. I have been a bastion of health my whole life and am still in a state of disbelief over all of this which began the last few months with numbness/tingling. The first doc feels I should wait until symptoms are worse -- in some ways that doesn't make sense to me, but I certainly don't want to rush into surgery.

Do you mind sharing with me the name of your doctor and how you are doing now?

Thanks so much for your help.

Best wishes,
Billie

 
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