Cymy Sue
08-19-2003, 09:02 AM
First, I want to tell you both that if your disc was totally destroyed, you did not make a mistake in having the discectomy.
I was told over 5 years ago there was not anything autogenous (grafts from your body) that would hold up as disc (I had already tried that) and my surgeons would not put in the metal implants then and they would not do it last fall. (I just read Elaine's post and maybe that's the reason.)
Right now there is just not anything else to do and 5 years ago, they had done enough discectomies to know that we can live without disc.
This is a very hard surgery to get over. Sometimes, Surgeons don't tell you all that can happen, but when your disc are shot, this is all they know to do. They should tell you how long it takes to get well and how hard it will be.
PLEASE REMEMBER, I had a lot of damage from previous surgeries prior to this one. This most likely complicated it for me. Also, age plays a very important role in how we heal, I was 45. Everyone is very different and will respond and heal differently.
I had both disc removed and due to prior surgeries, had a lot of scarring and other damage that had to be cleaned up. Sometimes this makes it worse.
Sometimes, it takes about a year or so for the nerves to calm down.
It takes several months for scar to form so that there will be a cushion where the disc was.
I was put in "Pain Management" and PT immediately after the surgery.
I was told you need a nerve pain med, a muscle relaxant and pain medication. I am very sensitive to medicines, so I could not take some of the ones that might have helped a lot.
I took Baclofen in place of Neurotin or Tegretol.
Klonopin in place of muscle relaxants &
Tylenol #3 was the strongest pain med I took.
I took this combination for a little over a year and decided to get off of it all. I still had pain, but I didn't want to take all of that medication anymore and the nerve pain was not quite so bad. (I did have nerve damage from prior surgeries and continued to have problems. I was in incredible pain before this surgery, so I really don't know how much pain it added and how long it took to recover from this procedure)
At some point scar tissue did form, but I continued to have pain, a very limited opening, and a bad deviation to the right that I had from a previous surgery.
I continued to go back to my Surgeon with these problems and was told I would just have to stay medicated. I ask about a splint helping and was told repeatedly that it would not. I did go back into "Pain Management" after almost 2 years being off, I couldn't deal with it anymore.
I was not happy with the way I was treated by this Surgeon after this surgery. It was like he dreaded to see me coming and he did not have any answers.
I found a Theraputic massage therapist about 4 years ago, who helped me so much, but I still had pain everyday, nerve pain flares, less than 19mm opening and a lot of other problems. A little over 2 years ago I developed Tinnitus, nasal problems, eye problems and some other symtoms I had never had.
I would not tell you all of this, but my Dentist who I finally went to and asked for help late last fall, believed that I had healed from the surgery very well, but had incredibly bad muscular problems and they were getting worse everyday. He designed a splint based on a theory for people without disc and one to let the muscles passively reposition back to what would be normal and I started getting better immediately and continue to do so. I don't know if it would work so well for everyone, but it might be worth trying.
I'm not sure Surgeons realize the impact these surgeries have on the muscles. The muscular aspect had never been mentioned to me by them at any time. I thought from what I was told that the majority of the problems I was having was due to nerve damage. Some of it was, but mostly, it was muscular.
I just don't think they know or understand how bad the muscles can get and the problems they can cause.
I believe many times, if we don't do well after a surgery, the muscles have reacted to the trauma and without intervention, they continue to react.
With the proper therapy, splint or otherwise, you can live without disc and live with very little discomfort. You just have to find someone who can figure out why you are still having pain & problems and it took a while for me. My mistake was listening to my surgeon and not seeking advise elsewhere.
Carey,
You may not have given yourself quite enough time. From what your Surgeon said, you are still having surgical pain and some swelling. It does last a while and it can be bad.
I never had pain so bad as to pass out. This sounds extreme to me. Is your Surgeon not concerned about this? Has he done any imaging or tests to make sure everything is progressing as it should? Are you taking anything for the pain? This surgery is not the usual 2 weeks of medication and it's over. Some Surgeons don't like to give meds over a couple of weeks. Would he refer you to a "Pain Management" center or Doctor. It's a known fact that we cannot heal when we are in this kind of pain. He may be a great guy and I'm sure he is, but if he has not had this done, he does not have a clue what you're going through.
A long time ago, I was hesistant to tell them how bad it was.(I thought they would think I was a whiner or just wanted drugs) A Pain Doctor told me, they couldn't help if they didn't know. I tell them now.
If your Surgeon is understanding and sympathetic it might be a good idea to have a long talk with him and tell him you're scared and concerned about this incredible pain after 2 months and could he explain a little more about what for you to expect. If you haven't, you really need to make him understand how bad this is.
I had some bad pain, but not what you're having.
cally,
I guess if you've made it this far, you've read how long and so on. Since you've had prior procedures, too, it may take a little longer.
I did not have sticking or any noises. I don't know if that is normal or not. I guess you've read my opinions on after-care by surgeons. My candid opinion is, if you have a Dentist you trust and is knowledgeable about surgeries, talk to him. If not, I would find someone else who understands these procedures and get their opinion. After a year, I think you should be getting better. I don't think you should have to get used to sticking and noises and I'm not sure anyone can.
I'm glad to hear you're in a splint, but maybe it needs to be changed. I think if I had been put in my current splint as soon as possible after my surgery, I would have had about 5 years less awful pain & problems.
I made a terrible mistake and wasted 5 years of my life by not finding someone who could figure out what was going on and what would help.
We may not have the same problems, but someone somewhere can help you. I thought since I was a multi-surgical and middle aged, I was condemned to live that awful life. I thought this due to a Surgeon's beliefs. He knows surgery, he knows nothing else. (I have told him this, so I'm not bashing behind his back.)
I believe you can find someone to help you.
I'm so very sorry you both are going through such an awful time. It is a terrible surgery to have to have, but you can get better. Don't make the mistake I did and not look for help elsewhere. Don't accept the fact that you will have to live like this.
Carey, you may have a few more months to be completely healed, but with the proper help, you can do it.
cally, it may be time for you to start questioning some of the answers you're getting.
I'm much older than both of you, I think I had a lot more previous damage, I had both disc removed and now that the cause of the pain and problems has been addressed, I'm feeling better than I have in years.
Don't suffer with this because one Doctor does not have the answer.
Take Care & My best to both of you,
Cymy Sue
[This message has been edited by Cymy Sue (edited 08-19-2003).]
I was told over 5 years ago there was not anything autogenous (grafts from your body) that would hold up as disc (I had already tried that) and my surgeons would not put in the metal implants then and they would not do it last fall. (I just read Elaine's post and maybe that's the reason.)
Right now there is just not anything else to do and 5 years ago, they had done enough discectomies to know that we can live without disc.
This is a very hard surgery to get over. Sometimes, Surgeons don't tell you all that can happen, but when your disc are shot, this is all they know to do. They should tell you how long it takes to get well and how hard it will be.
PLEASE REMEMBER, I had a lot of damage from previous surgeries prior to this one. This most likely complicated it for me. Also, age plays a very important role in how we heal, I was 45. Everyone is very different and will respond and heal differently.
I had both disc removed and due to prior surgeries, had a lot of scarring and other damage that had to be cleaned up. Sometimes this makes it worse.
Sometimes, it takes about a year or so for the nerves to calm down.
It takes several months for scar to form so that there will be a cushion where the disc was.
I was put in "Pain Management" and PT immediately after the surgery.
I was told you need a nerve pain med, a muscle relaxant and pain medication. I am very sensitive to medicines, so I could not take some of the ones that might have helped a lot.
I took Baclofen in place of Neurotin or Tegretol.
Klonopin in place of muscle relaxants &
Tylenol #3 was the strongest pain med I took.
I took this combination for a little over a year and decided to get off of it all. I still had pain, but I didn't want to take all of that medication anymore and the nerve pain was not quite so bad. (I did have nerve damage from prior surgeries and continued to have problems. I was in incredible pain before this surgery, so I really don't know how much pain it added and how long it took to recover from this procedure)
At some point scar tissue did form, but I continued to have pain, a very limited opening, and a bad deviation to the right that I had from a previous surgery.
I continued to go back to my Surgeon with these problems and was told I would just have to stay medicated. I ask about a splint helping and was told repeatedly that it would not. I did go back into "Pain Management" after almost 2 years being off, I couldn't deal with it anymore.
I was not happy with the way I was treated by this Surgeon after this surgery. It was like he dreaded to see me coming and he did not have any answers.
I found a Theraputic massage therapist about 4 years ago, who helped me so much, but I still had pain everyday, nerve pain flares, less than 19mm opening and a lot of other problems. A little over 2 years ago I developed Tinnitus, nasal problems, eye problems and some other symtoms I had never had.
I would not tell you all of this, but my Dentist who I finally went to and asked for help late last fall, believed that I had healed from the surgery very well, but had incredibly bad muscular problems and they were getting worse everyday. He designed a splint based on a theory for people without disc and one to let the muscles passively reposition back to what would be normal and I started getting better immediately and continue to do so. I don't know if it would work so well for everyone, but it might be worth trying.
I'm not sure Surgeons realize the impact these surgeries have on the muscles. The muscular aspect had never been mentioned to me by them at any time. I thought from what I was told that the majority of the problems I was having was due to nerve damage. Some of it was, but mostly, it was muscular.
I just don't think they know or understand how bad the muscles can get and the problems they can cause.
I believe many times, if we don't do well after a surgery, the muscles have reacted to the trauma and without intervention, they continue to react.
With the proper therapy, splint or otherwise, you can live without disc and live with very little discomfort. You just have to find someone who can figure out why you are still having pain & problems and it took a while for me. My mistake was listening to my surgeon and not seeking advise elsewhere.
Carey,
You may not have given yourself quite enough time. From what your Surgeon said, you are still having surgical pain and some swelling. It does last a while and it can be bad.
I never had pain so bad as to pass out. This sounds extreme to me. Is your Surgeon not concerned about this? Has he done any imaging or tests to make sure everything is progressing as it should? Are you taking anything for the pain? This surgery is not the usual 2 weeks of medication and it's over. Some Surgeons don't like to give meds over a couple of weeks. Would he refer you to a "Pain Management" center or Doctor. It's a known fact that we cannot heal when we are in this kind of pain. He may be a great guy and I'm sure he is, but if he has not had this done, he does not have a clue what you're going through.
A long time ago, I was hesistant to tell them how bad it was.(I thought they would think I was a whiner or just wanted drugs) A Pain Doctor told me, they couldn't help if they didn't know. I tell them now.
If your Surgeon is understanding and sympathetic it might be a good idea to have a long talk with him and tell him you're scared and concerned about this incredible pain after 2 months and could he explain a little more about what for you to expect. If you haven't, you really need to make him understand how bad this is.
I had some bad pain, but not what you're having.
cally,
I guess if you've made it this far, you've read how long and so on. Since you've had prior procedures, too, it may take a little longer.
I did not have sticking or any noises. I don't know if that is normal or not. I guess you've read my opinions on after-care by surgeons. My candid opinion is, if you have a Dentist you trust and is knowledgeable about surgeries, talk to him. If not, I would find someone else who understands these procedures and get their opinion. After a year, I think you should be getting better. I don't think you should have to get used to sticking and noises and I'm not sure anyone can.
I'm glad to hear you're in a splint, but maybe it needs to be changed. I think if I had been put in my current splint as soon as possible after my surgery, I would have had about 5 years less awful pain & problems.
I made a terrible mistake and wasted 5 years of my life by not finding someone who could figure out what was going on and what would help.
We may not have the same problems, but someone somewhere can help you. I thought since I was a multi-surgical and middle aged, I was condemned to live that awful life. I thought this due to a Surgeon's beliefs. He knows surgery, he knows nothing else. (I have told him this, so I'm not bashing behind his back.)
I believe you can find someone to help you.
I'm so very sorry you both are going through such an awful time. It is a terrible surgery to have to have, but you can get better. Don't make the mistake I did and not look for help elsewhere. Don't accept the fact that you will have to live like this.
Carey, you may have a few more months to be completely healed, but with the proper help, you can do it.
cally, it may be time for you to start questioning some of the answers you're getting.
I'm much older than both of you, I think I had a lot more previous damage, I had both disc removed and now that the cause of the pain and problems has been addressed, I'm feeling better than I have in years.
Don't suffer with this because one Doctor does not have the answer.
Take Care & My best to both of you,
Cymy Sue
[This message has been edited by Cymy Sue (edited 08-19-2003).]
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cally22
08-19-2003, 03:58 PM
Dear CyMy Sue, your words touched me so much. And they have really began to make me think. I'm not sure what my next action should be , but I know I should do something. My dentist hasn't been too helpful in the past so I don't think I will be going back to see her. So I really don't know where to go, but.... Something has to give. You see I have already been through one dentist and before this oral surgeon who did my surgery two others. And this oral surgeon was supposedly the best of the best, in our area. So? Now what?
thank you !
thank you !
Cymy Sue
10-28-2003, 05:23 PM
http://www.healthboards.com/ubb/t_up.gif for caro
[This message has been edited by Cymy Sue (edited 10-29-2003).]
[This message has been edited by Cymy Sue (edited 10-29-2003).]
Carey
10-29-2003, 02:28 AM
Hi Cymy Sue,
While reading your post, i was nearly in tears. you are right surgeons dont have a clue what pain we do go thru after such surgeries. he thinks my pain is muscular related which i agree to some degree( as i still have joint pain). if i am in a lot of pain, the temporary fix is my surgeon pumping my face/joint with local anaesthetic. this does work for 6 hours but does not help with the head pain.
i have found it very hard to try and get accross to dr's that i don't just get joint pain. with it comes the head ache, facial and ear pain, all in one package and not just the one.
if i have a headache, that then triggers off the facial and ear pain etc.
i don't know if you read my post on "botox" but i decided not to go ahead with it purely on the basis of what my neurologist said, that he hasn't had much success with tmj patients. and if botox makes my pain worse, gee i couldn't even bare to think of how much worse my pain can get, let alone as to what it is like now!!!!!!
the medications that i am taking and have been for the past 2 and a half years are:
Tramadol~ 200mg (for pain)
Propranolol~ 40mg (for headaches)
Doxepin~ 125mg (for pain)
Clonazepam~ 2mg (muscle relaxant)
Baclofen~ 10mg (muscle relaxant)
Toradol~ 10mg (for severe pain)
Rani~ 150mg (antiemetic)
so you can see why my day ends at 7pm every night. I have tried to reduce the amounts of meds i am taking but my pain is still too severe.
i would hate to think what these drugs are doing to my system especially my liver, and being so young at 23, i am hopeful of one day soon these meds will be a thing of the past, and my pain will finally decrease.
thanks Cymy Sue,
Keep me posted,
Take care,
Carey
While reading your post, i was nearly in tears. you are right surgeons dont have a clue what pain we do go thru after such surgeries. he thinks my pain is muscular related which i agree to some degree( as i still have joint pain). if i am in a lot of pain, the temporary fix is my surgeon pumping my face/joint with local anaesthetic. this does work for 6 hours but does not help with the head pain.
i have found it very hard to try and get accross to dr's that i don't just get joint pain. with it comes the head ache, facial and ear pain, all in one package and not just the one.
if i have a headache, that then triggers off the facial and ear pain etc.
i don't know if you read my post on "botox" but i decided not to go ahead with it purely on the basis of what my neurologist said, that he hasn't had much success with tmj patients. and if botox makes my pain worse, gee i couldn't even bare to think of how much worse my pain can get, let alone as to what it is like now!!!!!!
the medications that i am taking and have been for the past 2 and a half years are:
Tramadol~ 200mg (for pain)
Propranolol~ 40mg (for headaches)
Doxepin~ 125mg (for pain)
Clonazepam~ 2mg (muscle relaxant)
Baclofen~ 10mg (muscle relaxant)
Toradol~ 10mg (for severe pain)
Rani~ 150mg (antiemetic)
so you can see why my day ends at 7pm every night. I have tried to reduce the amounts of meds i am taking but my pain is still too severe.
i would hate to think what these drugs are doing to my system especially my liver, and being so young at 23, i am hopeful of one day soon these meds will be a thing of the past, and my pain will finally decrease.
thanks Cymy Sue,
Keep me posted,
Take care,
Carey
kaamom
10-29-2003, 04:44 PM
Hi I just wanted to share with you my experience and update you as what my next step is going to be.
My Tmj problems started in the spring. I noticed my jaw was making crunching noises when I opened wide to eat or yawn. It steadly got worse. My neck and the back of my head got so tight and the headaches I had were awful. Then my jaw started to go to the right whenever I talked, yawn or chewed and started sticking. I could dislodge it by wiggling my jaw around. I went to e Dentist who wanted to put a full set of braces on. Well while I was deciding if I could afford it(it was going to cost my $5,000 out of my own pocket)my jaw got stuck and that doctor was unfortunatly on vacation so I was sent to an oral sergeon who tried diagnosed me with a dislocated disk in my jaw. He tried manual manipulation but it didnt work, then he wanted to do arthroscope but he didnt have the scope so off I went to another oral sergeon, who said that I didnt need the arthroscope but he wanted to do arthroplasty and take out my disk and replace it with fat graph from my stomach, well I had to wait 1 month just to see him then they didnt call me for 3 weeks to set up the surgery then the surgery itself wanst for another 6 weeks so 3 months later im still waiting, but in the meantime I did alot of reading here on this sight about the downfalls of surgery and to check out other options. Well I cancelled my surgery and im going to go see a Tmj specialist to see if he will recommend maybe splint therapy or braces, anything but surgery, Well I will keep you updated on my appointment with the Tmj specialist, Sorry its so long but alot has happened and just wanted to share, Kaamom
My Tmj problems started in the spring. I noticed my jaw was making crunching noises when I opened wide to eat or yawn. It steadly got worse. My neck and the back of my head got so tight and the headaches I had were awful. Then my jaw started to go to the right whenever I talked, yawn or chewed and started sticking. I could dislodge it by wiggling my jaw around. I went to e Dentist who wanted to put a full set of braces on. Well while I was deciding if I could afford it(it was going to cost my $5,000 out of my own pocket)my jaw got stuck and that doctor was unfortunatly on vacation so I was sent to an oral sergeon who tried diagnosed me with a dislocated disk in my jaw. He tried manual manipulation but it didnt work, then he wanted to do arthroscope but he didnt have the scope so off I went to another oral sergeon, who said that I didnt need the arthroscope but he wanted to do arthroplasty and take out my disk and replace it with fat graph from my stomach, well I had to wait 1 month just to see him then they didnt call me for 3 weeks to set up the surgery then the surgery itself wanst for another 6 weeks so 3 months later im still waiting, but in the meantime I did alot of reading here on this sight about the downfalls of surgery and to check out other options. Well I cancelled my surgery and im going to go see a Tmj specialist to see if he will recommend maybe splint therapy or braces, anything but surgery, Well I will keep you updated on my appointment with the Tmj specialist, Sorry its so long but alot has happened and just wanted to share, Kaamom

