BlueBelle
01-09-2003, 01:24 PM
Hello,
I just found this site, wish I would have found it when all this first started. Wouldn't have wasted so much of my painful time with clueless doctors.
Briefly, I have gone through all the pain, numbness, tingling. Physical therapy, epidural shots (5 over the summer) then was told I need surgery. Had to put the surgery off for very good reason. Now the pain has subsided to burning in my elbow and shoulder area. My question is, should I still have the surgery? If I don't can I do damage to my nerves?
In my head, I know I should still have the surgery, I'm tired of living this way. But I also have fibro and I am used to living in pain. Now I have been told I have low IGG. Not sure about that or what that even means.
Anyway, has anybody had the surgery after the main pain is gone and just left with burning?
So confused.
I just found this site, wish I would have found it when all this first started. Wouldn't have wasted so much of my painful time with clueless doctors.
Briefly, I have gone through all the pain, numbness, tingling. Physical therapy, epidural shots (5 over the summer) then was told I need surgery. Had to put the surgery off for very good reason. Now the pain has subsided to burning in my elbow and shoulder area. My question is, should I still have the surgery? If I don't can I do damage to my nerves?
In my head, I know I should still have the surgery, I'm tired of living this way. But I also have fibro and I am used to living in pain. Now I have been told I have low IGG. Not sure about that or what that even means.
Anyway, has anybody had the surgery after the main pain is gone and just left with burning?
So confused.
Sponsor
SherryElaine
01-14-2003, 01:05 PM
I would like to know the answer to that question too. I was also in severe pain and did PT and refused the injections and I was told I needed surgery for C5/6 but I also put off my surgery for reasons "long story" My pain is less now but have some numbness in thumb and arm muscles jump alot but I don't have constsnt high pain but always have some sort of pain but lower level. Do I still need surgery? Is it dangerous to stay this way and live with it? Anyone have the surgery and regret it?
Niki47
01-14-2003, 05:32 PM
Hi there,
This may not be the answer you want, but I too had bad pain I lived with for years. During a relatively pain free spell, I became crippled. Had to have more of an emergency surgery. The most serious spinal cord problems have no to low level pain.
The less pain I had, the more wierd cramping, twitches and numbness I did have.
My problems were cervical, and the prognosis is alot worse since it was left to go for so long.
Trust your instincts and your doctors, and do not rely on pain as the determining factor.
Hope this helps.
Niki47
This may not be the answer you want, but I too had bad pain I lived with for years. During a relatively pain free spell, I became crippled. Had to have more of an emergency surgery. The most serious spinal cord problems have no to low level pain.
The less pain I had, the more wierd cramping, twitches and numbness I did have.
My problems were cervical, and the prognosis is alot worse since it was left to go for so long.
Trust your instincts and your doctors, and do not rely on pain as the determining factor.
Hope this helps.
Niki47
SherryElaine
01-14-2003, 07:52 PM
Thanks Niki47 for the reply. How are you doing now? What kind of surgery did you have in the cervical? I've been in pain for 18 months, MRI showed herniated disc and bone spurs pinching nerve in one level only and no cord compression. I just saw a new doc last week for another opinion and he took x-rays and said I almost have bone rubbing bone and it was up to me if I want to have new MRI and surgery or live with the pain. He said surgery would reguire going thur the throat and removing disc and spurs and implant donor bone and plate and screws and one night stay in hospital. He made it sound so simply and easy.... What you said about less pain and more muscle cramps and twitching is when you had more damage has got me worried cause that is where I am at now. I wonder why the doc never mentioned that to me? They also did a EMG test and said I had no nerve damage yet. So confusing to me. I supose I am never going to heal after 18 months and need to just get my courage up and go for surgery......
lmotivans
01-15-2003, 12:12 AM
Hi Sherry,
I'm 9 months post from ACDF, they went thru the front of the throat, removed 2 herniated disks at levels C5/C6 and C6/C7, implanted donor bone and fused everthing with a titanium plate and 6 screws. I was only in the hospital overnight and out of work for 2 weeks. I have an office job. The surgery is not that bad, the first day or so is a little uncomforatble and your throat is a little sore. You can go back and look up my early posts and see my progress.
I was in pain for over six months before I had surgery. After surgery the pain went away. It will take time to build your muscles back.
If you decide on the surgery, I wish you lots luck.
Regards,
Leo :wave:
[This message has been edited by moderator1 (edited 01-16-2003).]
I'm 9 months post from ACDF, they went thru the front of the throat, removed 2 herniated disks at levels C5/C6 and C6/C7, implanted donor bone and fused everthing with a titanium plate and 6 screws. I was only in the hospital overnight and out of work for 2 weeks. I have an office job. The surgery is not that bad, the first day or so is a little uncomforatble and your throat is a little sore. You can go back and look up my early posts and see my progress.
I was in pain for over six months before I had surgery. After surgery the pain went away. It will take time to build your muscles back.
If you decide on the surgery, I wish you lots luck.
Regards,
Leo :wave:
[This message has been edited by moderator1 (edited 01-16-2003).]
nanna02
01-15-2003, 07:47 AM
Niki 147 .. :wave:
I had to comment on your reply as I completely agree with your idea of " the less pain the more damage" etc..
I had about 24 years initially of terrible pain in my back.. blamed on many things , from MS to Arthritis,Carpal Tunnel Syndrome in hands, (numbness) , :nono:
sometimes I would be up at night crying in agony with deep bone pain , rocking in a chair ,
only given painkillers , the usual type. When Physios looked at my spine/back , nothing was ever really taken that seriously ,
( maybe Scoliosis ?.. they said in my notes ..)
and I was led to think they thought I was imagining it but I KNEW it was so real..just couldn't get any response from anyone . http://www.healthboards.com/ubb/hammer.gif
THEN.. for the FIRST time in my life, the beggining of Feb. 1999, I COULDN'T believe it one day ..
my back pain was gone !!!!!! http://www.healthboards.com/ubb/dance.gif
It was AMAZING.. I felt WONDERFUL.. and told people how great it was to be fREE of pain!!..
Little did I know Niki , what it was all about ?!! :(
I did not realize I had begun to go numb from "the inside out"!!
It crept down from my ribs , inside my private parts , my back, ribs down my legs to the toes , and eventually could hardly walk. So yes , I was free of pain but at a "Price"...
I've since had 3 spinal ops over the 2 1/2 -3 years to remove Massive calcification squashing the Spinal cord so bad..
but I am still not walking good yet, on crutches permanently still .. only a little managable pain from the op now , but may have to live with that for some time , even forever .. who knows .
Any way Niki, I just wanted to show here ..
PAIN cannot always be used for a prognosis, well not in my case any way.. it was too late !!
and I heartily agree with you !!
Hope this helps someone not to procrasinate too long to get help, as was done to me by the Medical Profession !! :(
Cheers to All
Belle NZ xxx http://www.healthboards.com/ubb/heart.gif
I had to comment on your reply as I completely agree with your idea of " the less pain the more damage" etc..
I had about 24 years initially of terrible pain in my back.. blamed on many things , from MS to Arthritis,Carpal Tunnel Syndrome in hands, (numbness) , :nono:
sometimes I would be up at night crying in agony with deep bone pain , rocking in a chair ,
only given painkillers , the usual type. When Physios looked at my spine/back , nothing was ever really taken that seriously ,
( maybe Scoliosis ?.. they said in my notes ..)
and I was led to think they thought I was imagining it but I KNEW it was so real..just couldn't get any response from anyone . http://www.healthboards.com/ubb/hammer.gif
THEN.. for the FIRST time in my life, the beggining of Feb. 1999, I COULDN'T believe it one day ..
my back pain was gone !!!!!! http://www.healthboards.com/ubb/dance.gif
It was AMAZING.. I felt WONDERFUL.. and told people how great it was to be fREE of pain!!..
Little did I know Niki , what it was all about ?!! :(
I did not realize I had begun to go numb from "the inside out"!!
It crept down from my ribs , inside my private parts , my back, ribs down my legs to the toes , and eventually could hardly walk. So yes , I was free of pain but at a "Price"...
I've since had 3 spinal ops over the 2 1/2 -3 years to remove Massive calcification squashing the Spinal cord so bad..
but I am still not walking good yet, on crutches permanently still .. only a little managable pain from the op now , but may have to live with that for some time , even forever .. who knows .
Any way Niki, I just wanted to show here ..
PAIN cannot always be used for a prognosis, well not in my case any way.. it was too late !!
and I heartily agree with you !!
Hope this helps someone not to procrasinate too long to get help, as was done to me by the Medical Profession !! :(
Cheers to All
Belle NZ xxx http://www.healthboards.com/ubb/heart.gif
BlueBelle
01-15-2003, 10:02 AM
Thank you for your replies and stories. I guess I will be making that appointment for surgery now.
SherryElaine, thanks for picking my question up and making it more understandable.
Now about the scars on the neck, I'm not vain, just curious. When they go through the front of the neck, what kind of scar are you left with?
Again, thanks for the info.
[This message has been edited by BlueBelle (edited 01-15-2003).]
[This message has been edited by BlueBelle (edited 01-15-2003).]
SherryElaine, thanks for picking my question up and making it more understandable.
Now about the scars on the neck, I'm not vain, just curious. When they go through the front of the neck, what kind of scar are you left with?
Again, thanks for the info.
[This message has been edited by BlueBelle (edited 01-15-2003).]
[This message has been edited by BlueBelle (edited 01-15-2003).]
lmotivans
01-15-2003, 05:43 PM
Hi BlueBelle
I had my operation last April and my scar is about 2" long and its a very fine razor line. I can't see it unless I'm really looking. About a few weeks after the surgery, I was putting Vitamin E oil on it a few times a day. This helps soften the scar. I too was very worried about the scar and I'm very pleased with my results.
Good Luck
Leo
PS Belle0050, it nice to see you on the boards. I hope you start feeling better soon. Keep your positive attitude and you are in my thoughts. Gentle Hugs.
I had my operation last April and my scar is about 2" long and its a very fine razor line. I can't see it unless I'm really looking. About a few weeks after the surgery, I was putting Vitamin E oil on it a few times a day. This helps soften the scar. I too was very worried about the scar and I'm very pleased with my results.
Good Luck
Leo
PS Belle0050, it nice to see you on the boards. I hope you start feeling better soon. Keep your positive attitude and you are in my thoughts. Gentle Hugs.
empi
01-15-2003, 06:37 PM
Hi BlueBelle, everyone is correct, the scar is about 2 inches and 9 weeks post op I have to really look for it. He did it horizontally on the line/crease in the neck so it isn;'t bad at all.
If you have a good neurosurgeon you will do fine. I< had virtually no pain execept a bit of a sore throat for about a week. I am a legsal secretary and was back to work in two weeks. The big neck brce was the worst part of the whole process but necessary. I wore it for two weeks. However not everyone has to wear one. My fusion was aithout a titanium plate an screws using only donor bone. My doc does not put plate sin for a one-level fusion which mine was. he doesuse the plate for more than one level that is why I needed the brace but that is all in the past and life is much better.
Good luck and keep us posted.
Maria.
------------------
If you have a good neurosurgeon you will do fine. I< had virtually no pain execept a bit of a sore throat for about a week. I am a legsal secretary and was back to work in two weeks. The big neck brce was the worst part of the whole process but necessary. I wore it for two weeks. However not everyone has to wear one. My fusion was aithout a titanium plate an screws using only donor bone. My doc does not put plate sin for a one-level fusion which mine was. he doesuse the plate for more than one level that is why I needed the brace but that is all in the past and life is much better.
Good luck and keep us posted.
Maria.
------------------
empi
01-15-2003, 07:34 PM
Correction. I wore the dreaded neck brace for 2 MONTHS not 2 weeks.
Maria
------------------
Maria
------------------
Niki47
01-15-2003, 09:29 PM
Hi Sherry, Belle, et al:
My surgery was not typical in that I had collapsed prior to the scheduled date. I was 4 days in the hospital on steroids BEFORE they could even do the surgery. So, I was already a quad when they got to me. So my recovery is not gonna be the same as most either. However...
My diagnosis was cervical spondylosis with Myelopathy, I have congenital stenosis. I had the anterior procedure, but at the maximum levels, so my scar is not completely straight, kind of angled for more exposure... it is about 3 inches long. But not too horrid. I use vitamin E oil also.
They shaved off c-4, removed c-5 & c-6, and removed all the associated discs above and below the affected areas. I have my own hip bones (2 pieces) to replace the mess, and I have a titanium plate from c-3 to c-7.
I am 10 weeks post op now, and I can walk with a walker, or do the penguin bobble without. Sadly, it has trashed my voice. I talk like Elmer Fudd on a good day. They can not predict how normal my gait will ever be, but i am working on it. There is alot of twitches and spasms as thing regenerate, and burning and itching are common. (They tell me those are good signs... numbness is bad)
So, set aside the depression, days I think I am rainman's sister, fact I can't do much yet... and I am lucky to be both alive and still semi-mobile!!!
Heck... I am glad when I can brush my own hair!!!
This has been a life changing illness and surgery. I only wish I was more informed BEFORE, and found these boards sooner.
My advice to any and all who contemplate the procedures... If you need it... get it! No real doctor would recommend a draastic procedure unless it was warranted. The procedure is not nearly as awful as the recovery can be if you wait too long. (Except the donor site in the hip hurts like heck!!)
Well, I don't know if that helps or not... but that is the sum of it. They say it will be 6 months to a year before I am as recovered as I will be.
Good luck with your problems...
Niki47
My surgery was not typical in that I had collapsed prior to the scheduled date. I was 4 days in the hospital on steroids BEFORE they could even do the surgery. So, I was already a quad when they got to me. So my recovery is not gonna be the same as most either. However...
My diagnosis was cervical spondylosis with Myelopathy, I have congenital stenosis. I had the anterior procedure, but at the maximum levels, so my scar is not completely straight, kind of angled for more exposure... it is about 3 inches long. But not too horrid. I use vitamin E oil also.
They shaved off c-4, removed c-5 & c-6, and removed all the associated discs above and below the affected areas. I have my own hip bones (2 pieces) to replace the mess, and I have a titanium plate from c-3 to c-7.
I am 10 weeks post op now, and I can walk with a walker, or do the penguin bobble without. Sadly, it has trashed my voice. I talk like Elmer Fudd on a good day. They can not predict how normal my gait will ever be, but i am working on it. There is alot of twitches and spasms as thing regenerate, and burning and itching are common. (They tell me those are good signs... numbness is bad)
So, set aside the depression, days I think I am rainman's sister, fact I can't do much yet... and I am lucky to be both alive and still semi-mobile!!!
Heck... I am glad when I can brush my own hair!!!
This has been a life changing illness and surgery. I only wish I was more informed BEFORE, and found these boards sooner.
My advice to any and all who contemplate the procedures... If you need it... get it! No real doctor would recommend a draastic procedure unless it was warranted. The procedure is not nearly as awful as the recovery can be if you wait too long. (Except the donor site in the hip hurts like heck!!)
Well, I don't know if that helps or not... but that is the sum of it. They say it will be 6 months to a year before I am as recovered as I will be.
Good luck with your problems...
Niki47
Renee016
01-25-2003, 11:02 PM
Hi, everyone. I too am facing surgery in the near future, although right now things are being held up by my orthopedist who keeps wanting me to see the nuerologist and get more tests done when it is plain as day on my MRI that the herniated discs in my neck on pressing on the spinal cord, actually indenting it. The problem is that he thinks I should be in more pain than I am in, especially with my arms but my main symptoms are mostly in my legs and not really pain - weakness, burning, tingling and little stabbing pains. I've had neck pain in the past but not now - just maybe some stiffness from time to time. I too am worried about putting this off and turning into permanent nerve damage. I am going to see a nuerosurgeon next week and I am hoping he takes me more seriously.
BlueBelle, I would get as much information on the surgery you would need and if you are going to need it its better to do it while your younger and before it gets too bad.
Take care
Renee
BlueBelle, I would get as much information on the surgery you would need and if you are going to need it its better to do it while your younger and before it gets too bad.
Take care
Renee
Jeannie45
02-04-2003, 02:20 PM
Hi Sherry, Niki, and Everyone-
I am 6 days post op. I had the surgery on 1/29/03. For me, it was the best decision I could have made. I didn't have any pain either, so the diagnosis of 3 herniated disc's and spinal stenosis threw me for a loop! I started experiencing numbness in my finger tips the end of November 2002. By the end of December I lost feeling in both hands, both arms, and my feet. By January I had no feeling in my mouth. I couldn't sense hot or cold, and had no taste sensation. I was scared. It was happening so fast. I had 2 MRI's and an EMG, and I was sure that before I found out the results of the test I would be completely paralyzed. I was sure that I would just wake up one morning and not be able to get myself out of bed.
After reading some of these comments, I don't know how some of you have gone for years with these symptoms. I thought I was one of the lucky ones, not to have one day of pain!
When my MRI results came back, I was scheduled for surgery within 5 days. As I said, for me, it was the right choice. I have my arms and feet back. I have feeling in my pinkie, ring and middle fingers. I can sense hot and cold in my mouth again. The taste is not that acute yet. My doctor told me I would get more back yet. He said that it would take some time for the spinal cord to decompress and as it does, more feeling will come back.
I only took tylenol while I was in the hospital. It was virtually painless, except for the sore throat, and we've all had a sore throat at one time or another! I wish you all luck. If you feel that they are not moving fast enough, or you are not being given the care you need or deserve, BE ASSERTIVE! You are important! Ask if they are giving you the care that they would want or expect if it were their diagnosis. My thoughts and prayers are with all of you.
I am 6 days post op. I had the surgery on 1/29/03. For me, it was the best decision I could have made. I didn't have any pain either, so the diagnosis of 3 herniated disc's and spinal stenosis threw me for a loop! I started experiencing numbness in my finger tips the end of November 2002. By the end of December I lost feeling in both hands, both arms, and my feet. By January I had no feeling in my mouth. I couldn't sense hot or cold, and had no taste sensation. I was scared. It was happening so fast. I had 2 MRI's and an EMG, and I was sure that before I found out the results of the test I would be completely paralyzed. I was sure that I would just wake up one morning and not be able to get myself out of bed.
After reading some of these comments, I don't know how some of you have gone for years with these symptoms. I thought I was one of the lucky ones, not to have one day of pain!
When my MRI results came back, I was scheduled for surgery within 5 days. As I said, for me, it was the right choice. I have my arms and feet back. I have feeling in my pinkie, ring and middle fingers. I can sense hot and cold in my mouth again. The taste is not that acute yet. My doctor told me I would get more back yet. He said that it would take some time for the spinal cord to decompress and as it does, more feeling will come back.
I only took tylenol while I was in the hospital. It was virtually painless, except for the sore throat, and we've all had a sore throat at one time or another! I wish you all luck. If you feel that they are not moving fast enough, or you are not being given the care you need or deserve, BE ASSERTIVE! You are important! Ask if they are giving you the care that they would want or expect if it were their diagnosis. My thoughts and prayers are with all of you.