cherbnks
03-27-2005, 11:28 PM
Hi all. Wow, just had a followup with my neurosurgeon/spinal surgeon to go over an MRI after a wreck in November 04. It was significally worse from MRI of cervical area from one year ago. Specifically C4/6, C5/6 stenosis (congenital) and disc degeneration and herniation. mild flattening fo the cord. C4-5 neural foraminal narrowing secondary to protrusion and uncovertebral hypertrophy. Radiculopathy. CONFUSING!
My doctor told me to email him questions about the surgery he is recommending which is a fusion of C4/5/6 (front the front). One comment he made really freaked me out. He said if I virtually had no spinal fluid around 3 of the disks (therefore no margin for error) and if I was in a front end collision with air bag deployment with whiplash type injury, I could be paralyzed from the neck down. Do I take that dead seriously? Anyone?
After started doing online research (including reading this board), I started thinking back to other weird symptoms which have resulted in my having a fairly thick medical folder over the last 10 years. Can any of these be related to the congenital cervical stenosis and degeneration? Here it is. Let me know what you think. (sorry its long!), Oh, by the way, I just turned 51.
1. At age 37ish I developed bilateral carpal tunnel syndrome and even though the nerve conduction test wasn't conclusive, my orthopod did release surgery on both wrists.
2. At about the same time I also developed the electric pins and needles and numbing of outside of arms down into my pinky and ring fingers which indicated to him that I had ulner nerve compression, so I had 1 carpal and 1 ulner done, then 3 mos. later, had the other arm done. Seems to have worked.
3. At age 39 I suddenly developed extreme weakness in my legs (especially my left). So bad that I had trouble walking, had to lift my leg with my hands to put it in the car, drug my toes scuffing up my shoes. Also had extreme fatigue and tremors in hands. My doctor sent me to SW Medical Center in Dallas where I lived to be tested for MS. Had MRI, and other neurological tests. They couldn't figure out why I was having problems. As far as I know there wasn't an MRI done of my neck, just my head and back. I had trouble (and still do) closing my eyes with arms out and walking an imaginary line. I fall over. I can't remember exactly how long this lasted or what precipitated it. Seems to have just happened out of the blue. Probably lasted 1.5 years. I also had a chronic fatigue type component where I was so exhausted sometimes I'd have to go home early from work and go to bed.
4. Sometimes for no reason, I'd get really dizzy (loss of equilibrium). Wouldn't last a real long time and I seem to remember noting it happened after I'd been laying on my left side. Hasn't happened in a while.
5. A little bit before this happened, I started getting painful electric shocks down my left leg, through my ankle and into the outside of my foot into the 2 small toes. Went on for awhile. Again, the nerve conduction studies were inconclusive. Now, my left foot outside toes are numb (nerve died?) and I can't "spread" the two small toes apart voluntarily. Bottom of foot under them numb too. I have alot of nerve associated pain in my feet, especially if I'm on them too long, walk too much, or wear shoes that aren't totally flat.
6. I also have alot of "trigger point" pain in my body (bi-laterally). Diagnosed with fibromyalgia about 9 years ago. Alot of fatigue (though doesn't seem as bad anymore until toward the end of the day when I "hit a wall". Extreme fatigue and aching in my neck, upper and middle back, and shoulders. Feels like my head is too heavy and the knob of my neck hurts. Headaches (dull). My shoulders and upper back hurt and my left arm aches and sometimes goes a little numb.
7. I have GERD, High blood pressure and asthma all of which developed at about the same time (about 9 years ago). I went through 2 years of severe bronchial asthma with racking coughing. Hospitalized several times. Still have chronic sinusitis and do alot of hard hawking and coughing which I'm sure thrusts my head forward.
Thanks for your feedback and helping me process this whole surgery thing.
Cher
:confused:
My doctor told me to email him questions about the surgery he is recommending which is a fusion of C4/5/6 (front the front). One comment he made really freaked me out. He said if I virtually had no spinal fluid around 3 of the disks (therefore no margin for error) and if I was in a front end collision with air bag deployment with whiplash type injury, I could be paralyzed from the neck down. Do I take that dead seriously? Anyone?
After started doing online research (including reading this board), I started thinking back to other weird symptoms which have resulted in my having a fairly thick medical folder over the last 10 years. Can any of these be related to the congenital cervical stenosis and degeneration? Here it is. Let me know what you think. (sorry its long!), Oh, by the way, I just turned 51.
1. At age 37ish I developed bilateral carpal tunnel syndrome and even though the nerve conduction test wasn't conclusive, my orthopod did release surgery on both wrists.
2. At about the same time I also developed the electric pins and needles and numbing of outside of arms down into my pinky and ring fingers which indicated to him that I had ulner nerve compression, so I had 1 carpal and 1 ulner done, then 3 mos. later, had the other arm done. Seems to have worked.
3. At age 39 I suddenly developed extreme weakness in my legs (especially my left). So bad that I had trouble walking, had to lift my leg with my hands to put it in the car, drug my toes scuffing up my shoes. Also had extreme fatigue and tremors in hands. My doctor sent me to SW Medical Center in Dallas where I lived to be tested for MS. Had MRI, and other neurological tests. They couldn't figure out why I was having problems. As far as I know there wasn't an MRI done of my neck, just my head and back. I had trouble (and still do) closing my eyes with arms out and walking an imaginary line. I fall over. I can't remember exactly how long this lasted or what precipitated it. Seems to have just happened out of the blue. Probably lasted 1.5 years. I also had a chronic fatigue type component where I was so exhausted sometimes I'd have to go home early from work and go to bed.
4. Sometimes for no reason, I'd get really dizzy (loss of equilibrium). Wouldn't last a real long time and I seem to remember noting it happened after I'd been laying on my left side. Hasn't happened in a while.
5. A little bit before this happened, I started getting painful electric shocks down my left leg, through my ankle and into the outside of my foot into the 2 small toes. Went on for awhile. Again, the nerve conduction studies were inconclusive. Now, my left foot outside toes are numb (nerve died?) and I can't "spread" the two small toes apart voluntarily. Bottom of foot under them numb too. I have alot of nerve associated pain in my feet, especially if I'm on them too long, walk too much, or wear shoes that aren't totally flat.
6. I also have alot of "trigger point" pain in my body (bi-laterally). Diagnosed with fibromyalgia about 9 years ago. Alot of fatigue (though doesn't seem as bad anymore until toward the end of the day when I "hit a wall". Extreme fatigue and aching in my neck, upper and middle back, and shoulders. Feels like my head is too heavy and the knob of my neck hurts. Headaches (dull). My shoulders and upper back hurt and my left arm aches and sometimes goes a little numb.
7. I have GERD, High blood pressure and asthma all of which developed at about the same time (about 9 years ago). I went through 2 years of severe bronchial asthma with racking coughing. Hospitalized several times. Still have chronic sinusitis and do alot of hard hawking and coughing which I'm sure thrusts my head forward.
Thanks for your feedback and helping me process this whole surgery thing.
Cher
:confused:
Sponsor
Ramsfan
03-27-2005, 11:41 PM
Hi Cher,
The first 3 symptoms you mentioned I developed all at once when I was 38. My surgeon basically told me the same thing. I saw him on a Friday and he scheduled surgery for the following Monday. He told me to stay home and relax over the weekend and not go anywhere if I didn't have to. I wasn't sure if he was blowing it out of proportion or not but he had me scared. Considering the symptoms I had I took him seriously. I had the surgery and the symptoms gradually went away. I've had to have 2 more surgeries since because of the domino affect. I don't regret having the surgeries even though I go through spells of discomfort. Considering the consequences I would do it again if I had a choice.
Frank :wave:
The first 3 symptoms you mentioned I developed all at once when I was 38. My surgeon basically told me the same thing. I saw him on a Friday and he scheduled surgery for the following Monday. He told me to stay home and relax over the weekend and not go anywhere if I didn't have to. I wasn't sure if he was blowing it out of proportion or not but he had me scared. Considering the symptoms I had I took him seriously. I had the surgery and the symptoms gradually went away. I've had to have 2 more surgeries since because of the domino affect. I don't regret having the surgeries even though I go through spells of discomfort. Considering the consequences I would do it again if I had a choice.
Frank :wave:
LACat
03-28-2005, 02:55 PM
Your story is remiscent of mine with incosequential changes in details. In my case it was "arthritis" instead of "carpal tunnel", etc., but basically a lot of neouro symptoms creeping in several years before everything went south and being misclassified or rationalized as something else. I also had major fatigue and related problems once the compression of the spinal chord became severe.
I am constantly reminded of the classic Monty Python skit "Nobody expects the Spanish Inquisition". Around age 50 you think about heart disease and cancer but no one worries about neuro problems, especially one related in part to a congenital defect. Cervical stenosis is the unexpected health crisis and because we were never educated about it, and because the symptoms are wierd, diffuse, develop over years, and sometimes come and go. Thus, there is a very troubling period leading prior to a definitive diagnosis.
I am constantly reminded of the classic Monty Python skit "Nobody expects the Spanish Inquisition". Around age 50 you think about heart disease and cancer but no one worries about neuro problems, especially one related in part to a congenital defect. Cervical stenosis is the unexpected health crisis and because we were never educated about it, and because the symptoms are wierd, diffuse, develop over years, and sometimes come and go. Thus, there is a very troubling period leading prior to a definitive diagnosis.
cherbnks
03-28-2005, 11:56 PM
You are so right on the weird and diffuse symptoms (in my case going on for the last 10 years). Its going to be very weird (in a good way) if having this surgery fixes all the mystery symptoms. In that case, I say, bring it on! Cut my neck open and fuse those puppies! I've been dealing with this long enough. In a way, its going to be very satisfying to finally have some illusive answers. Sometimes not knowing what's going on in your body is harder than knowing. Know what I mean?
Thanks for your comments. Sounds like you really went through it. Did you become paralyzed as a result of the stenosis and did your prognosis change after the surgery? Scary stuff!
Cher
Thanks for your comments. Sounds like you really went through it. Did you become paralyzed as a result of the stenosis and did your prognosis change after the surgery? Scary stuff!
Cher
TurtleD
03-29-2005, 12:05 PM
Cher, #3 is what put me in the hospital. I too got checked out for all the possibles like MS, stroke, etc. When they found out it was my neck, they didn't even let me leave the hosptial until the surgery was done. I was checked in on a Thursday, found out on Friday what the problems were, surgery was on Monday. I left the hospital on Tuesday. I had three levels done in May 2004 and had to go back in November and have the 4th disk done.
The recovery (getting back to normal) is slow going, but I haven't fallen since the second surgery. I still have the dizziness when I stand and close my eyes, some leg weakness and hand numbness, but month by month I'm seeing improvement. Would I have the surgery if I had it to do over? You bet. I don't feel that I had a choice, really.
Good luck on your surgery. I know you'll do just fine.
Nancy
The recovery (getting back to normal) is slow going, but I haven't fallen since the second surgery. I still have the dizziness when I stand and close my eyes, some leg weakness and hand numbness, but month by month I'm seeing improvement. Would I have the surgery if I had it to do over? You bet. I don't feel that I had a choice, really.
Good luck on your surgery. I know you'll do just fine.
Nancy
neckpatient
03-30-2005, 01:24 AM
cher you and I should talk! I am almost identical case, I had surgery. I am on a business trip and have to go now, but I will post in next day or two .
cherbnks
04-27-2005, 11:45 PM
i definitely want to talk. Did you have surgery yet? I'm due in May. trying to decide on my own bone or cadaver bone for graft. Opinion? My sister had surgery (she's a nurse) and had her own bone. That's what she recommends. I have osteoarthritis, so i'm thinking my own bone would probably heal better. Write when you can.
Cher
Cher
987mom
04-28-2005, 02:45 AM
Hi Cher, just curious....who is your doctor in Dallas? I had an ACDF 2/28 at Presby Dallas w/ Dr. Charles Banta. He is an orthopedic surgeon w/ spinal fellowship. Very nice guy.
Oh, and concerning the bone choice. Unless you are a smoker, I would definately have cadaver bone. The hip pain is the primary complaint after surgery. Sometimes the discomfort can last over a year.
Hope this helps.
Oh, and concerning the bone choice. Unless you are a smoker, I would definately have cadaver bone. The hip pain is the primary complaint after surgery. Sometimes the discomfort can last over a year.
Hope this helps.
coach606
04-29-2005, 08:42 PM
Cord compression is the major concern. It always causes the NS to pause a bit, even when my symptoms are diminishing, as they are now. I've never heard that about the spinal fluid loss being a real risk. I have a similar condition at one level because of ruptured disk. No one has mentioned the concern about having an accident. I have been told to watch out because of bone spur problems at another level of my neck that could be a danger in an accident or a fall, but never because of spinal fluid loss. Honestly, I kind of doubt that. It is, after all, a pancake batter consistency. Shock absorber, yes, but I think that's all.
My only other question to people is the legitimacy of having an ACD without fusion. I have read a lot about this because I have problems at four levels now. My symptoms are in retreat, but I'll probably have to deal with the stenosis and degenerating disk space at some point. From what I've read, you can get an ACD without fusion. This is a less traumatic operation with a quicker recovery time and it apparently has the same rates of success as the fusion.
You may want to look into it. I've read a number of studies that suggest that the ACD is really just as successful and it avoids the domino effect. I'll probably go that way if/when I have to.
Take care and feel better.
My only other question to people is the legitimacy of having an ACD without fusion. I have read a lot about this because I have problems at four levels now. My symptoms are in retreat, but I'll probably have to deal with the stenosis and degenerating disk space at some point. From what I've read, you can get an ACD without fusion. This is a less traumatic operation with a quicker recovery time and it apparently has the same rates of success as the fusion.
You may want to look into it. I've read a number of studies that suggest that the ACD is really just as successful and it avoids the domino effect. I'll probably go that way if/when I have to.
Take care and feel better.
neckpatient
04-29-2005, 08:42 PM
Sorry it took a while, I wanted to correspond but it was hectic and this one may take a little bit. You said C4-6, thats me too, i have mild, at some, moderate at some and severe at some congenital stenosis as well. Disk disease, herniation, i had floating piece, and cord flattening at C5 with lots of esteophyte growth and a misalignment. With a couple places no fluid ring at all. I have foraminal narrowing on the posterior and that was causing the nerve root compression and unbearable, horrible radicular pain on right. I am 46.
I did have the ACDF 4-6 2 level with donor bone and plate. Don't smoke, so cadaver was good for me, and i just followed instructions well.
1. The lack of spinal fluid comment: I don't like any doctor that scares you with stories to make you decide to do surgery. Iam not a doctor, but I went to 2 different specialties, a neruo and an ortho both heavily trained with fellowships, and years of experience, neither tried to scare the bejesus out of me like that. They were focused on the problem and the symptoms. If that were true couldn't that dr. just put you in a brace when you are in the car. Did you get one from that visit? Hm if you didn't doesn't it make you wonder if it was so serious why wouldn't they make you do that!!! I would be suspicious of that bedside manner!
2. Weird symptoms
You Me
Carpal Tunnel No
Pins and needles in arms to fingers Sometimes
Extreme weekness in legs Yes (for 6 months)
Fatigue in hands No
Balance Yes, I have fallen multiple times
Dizziness Preceeded the 6 months prior diagnosis
Painful electric shocks Yes, little pulses random, make me jump
Reflux Yes
Asthma Yes (onset at age 35)
? Random chest pains, no cause
? Burning arm pain
? bladder nerve problems
See what i mean we are very similar in history. The weakness in my legs, they had trouble at first figuring it out. Also thought could it be MS, it was quick onset and no cause figured out. We did thyroid treatment it stabilized, as did my asthma!! Not just synthroid they had to add a second hormone because it wasn't converting it correctly. AFter researching I found Csping is nerve supply to thyroid, it makes me wonder if it contributed to my problem. The other stuff didn't go away until i had the ACDF.
I have not been this happy or well since spring 2004, if you are a good candidate and tired of the problems find a good surgeon.
I did have the ACDF 4-6 2 level with donor bone and plate. Don't smoke, so cadaver was good for me, and i just followed instructions well.
1. The lack of spinal fluid comment: I don't like any doctor that scares you with stories to make you decide to do surgery. Iam not a doctor, but I went to 2 different specialties, a neruo and an ortho both heavily trained with fellowships, and years of experience, neither tried to scare the bejesus out of me like that. They were focused on the problem and the symptoms. If that were true couldn't that dr. just put you in a brace when you are in the car. Did you get one from that visit? Hm if you didn't doesn't it make you wonder if it was so serious why wouldn't they make you do that!!! I would be suspicious of that bedside manner!
2. Weird symptoms
You Me
Carpal Tunnel No
Pins and needles in arms to fingers Sometimes
Extreme weekness in legs Yes (for 6 months)
Fatigue in hands No
Balance Yes, I have fallen multiple times
Dizziness Preceeded the 6 months prior diagnosis
Painful electric shocks Yes, little pulses random, make me jump
Reflux Yes
Asthma Yes (onset at age 35)
? Random chest pains, no cause
? Burning arm pain
? bladder nerve problems
See what i mean we are very similar in history. The weakness in my legs, they had trouble at first figuring it out. Also thought could it be MS, it was quick onset and no cause figured out. We did thyroid treatment it stabilized, as did my asthma!! Not just synthroid they had to add a second hormone because it wasn't converting it correctly. AFter researching I found Csping is nerve supply to thyroid, it makes me wonder if it contributed to my problem. The other stuff didn't go away until i had the ACDF.
I have not been this happy or well since spring 2004, if you are a good candidate and tired of the problems find a good surgeon.
cherbnks
06-07-2005, 12:34 PM
I'm nervous. Cervical fusion tomorrow of 4/5 and 5/6. Its unavoidable; have congenital cervical stenosis, bone spurs, yada, yada. "No room for error" as the neurosurgeon says. I'm going with a cadaver graft following drs recommendation. Also internal fixation. Wish I knew what to expect post-surgery. Will I be able to climb stairs to my bedroom? Will I be able to get up and down off the bed? Anything else I can expect? Pain level? and how long? Any feedback on post-surgery on two level would be so reassuring. Its the not knowing what to expect that is crazy.
Cher
Cher
solardust
06-07-2005, 01:43 PM
Hi Cherbnks,keep positive thoughts,I know how nerve racking surgery can be,but you'll be on your way to healing once this is behind you,I wore a hard collar for 13 wks,so found my recliner a nice place, they will teach you to log roll off a flat service,using your elbow to help lift yurself and not your hand,stairs may go ok,but I would really advise you to take it super slow,and no lifting anything heavier then your clothes that your wearing at first,the kinder you are to yourself the easier recovery will be,and here's a big piece of advice,we all learn how to brace ourselfs prior to surgery(shoulders pulled up to head)its a reaction to these type injuries,so learn how to relax them, and let your shoulders drop when relaxing,it will be a big help to those shoulders and back muscles.I had c6-7 fusion w/donar and would call it a great success,but the level above was also bad and my NS left it,(I believe for my own good) but I went back to driving school bus and it has taken a toll,the bumping and stuff,and I find myself pulling up my shoulders again,so its something ya really have to work at,let us know how it goes, and good luck!!! Diana
cherbnks
06-07-2005, 06:02 PM
Thanks Solardust. I almost bought a recliner thinking it would be difficult to get up and down and I'd sleep in it. Now I wish I had. What do you think? Its not too late.
cherbnks
06-07-2005, 06:05 PM
Thanks AZnativ. Hey, are you in Arizona? I moved to northern virginia from Tucson (which I absolutely loved). Anyway, I see what you mean about similarities. Interesting about the thyroid thing. This could explain a whole plethora of symptoms over the years. Looking forward to better health. Do you recommend getting a recliner to sit and sleep in? I'm worried about it being hard to get up and down from bed. THanks again! Cheryl
solardust
06-08-2005, 06:42 AM
I would go ahead and get it,even if ya dont sleep in it,at least it would be a comphy spot to park your bum,haha, no really ,mine was used alot!!!! Thinking of you today, Diana
neckpatient
06-09-2005, 03:14 AM
The recliner was a big help to me. I slept sitting up for about the first three weeks to a month I think. I would have to check my diary. If you check my posts for my diary you will see the progress I made. I think I am pretty typical. It is not that it is hard to get up and down, it plain isn't comfortable for a few weeks.
neckpatient
06-09-2005, 03:16 AM
Good luck, I had outstanding outcome I am back to 95% for sure and loving it! Do what they say and you should heal well. Prayers are w/you. I do live in Tucson--love it!!
cherbnks
06-17-2005, 07:34 PM
Well, surgery was 9 days ago. I'm up and around really well. This was really nothing compared to having both of my knees replaced 4 years ago. As they say...everything's relative! I ended up going with the doc's recommendation of cadaver bone. He also used crushed up live bone from removed bone spurs and somehow "glues" it to the cadaver bone, thereby making some kind of dead/live mixture which evidentally has been shown to help. My fusion is 4/5 and 5/6 and I do have internal fixation. Was in the hospital overnight because you have to have 23 hr. supervision. Went home next afternoon. They kept cathetor in as well as a drain bag that drains blood from the surgical site. Removed all about 20 hrs. after surgery. Dr. said my cord had a dent in it where bone was pressing into it. That can't be good! Very little bleeding. I ended up buying a nice comfy recliner (I recommend LZBoy because they go back easier so you aren't using your head to push them, and they stay back (endorsement finished). I sit in that most of the day downstairs. Sleep in my own bed (the log rolling thing works well). Biggest thing especially once you start feeling pretty good, is you've got to take it easy and definitely not lift anything heavier than a 1/2 gal. of milk. That excludes alot of things if you think about it. Even opening some doors for yourself. I'm being pretty religious about following this direction as I don't want to mess up this fusion. Had xray today and everything is where its supposed to be..no slipping. Almost all the symptoms I had that led to surgery (pain, numbness, yada, yada) was gone right after the surgery. My neck and jaw are numb, but that's because tiny nerves are severed. They are starting to regenerate a little because now I feel a little tingling (like after seeing the dentist). That's all for now. Thanks to everyone who encouraged me. Cher
Tomorrow
06-20-2005, 08:38 AM
Hello Cher :wave:
I am very glad to hear that you are coming along well in your recovery. Also, it is so good that your previous symptoms prior to surgery have diminished. I pray that your nerves heal well without any pain.
:angel: Jeanne :angel:
I am very glad to hear that you are coming along well in your recovery. Also, it is so good that your previous symptoms prior to surgery have diminished. I pray that your nerves heal well without any pain.
:angel: Jeanne :angel:
frank0678
06-20-2005, 09:48 AM
To Cherbanks and everyone else:
This was the best thread I have read. I feel less weird now. I have a C6-7 herniated disc with spurs, buthe symptoms don't match what the doctors are looking for. Thus, they and I are at our wits ends. Each of you showed me that there may be some relief in the future. Thanks again.
This was the best thread I have read. I feel less weird now. I have a C6-7 herniated disc with spurs, buthe symptoms don't match what the doctors are looking for. Thus, they and I are at our wits ends. Each of you showed me that there may be some relief in the future. Thanks again.
neckpatient
06-22-2005, 02:38 AM
Hello, logged on to check on you. Glad you are doing well, keep it up and you will be fine in no time!