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How Long Is Too Long To Wait For TT Release?

Posted by Mike S. on 3/18/02 at 23:07 (076792)

I hear copious amounts of precaution about surgery, but nobody has spoke of the 'dying back' of the foot or wasting of the foot muscles and permanent nerve damage. Are some surgeries unsuccessful or less successful because one waited too long?

Re: How Long Is Too Long To Wait For TT Release?

Laurie R on 3/18/02 at 23:22 (076793)

Hi Mike , Let me say this , I will be having my tt release on April 9 th , I finally got my surgery date today . I started with my foot problems almost three years ago . All I can say is I started out with just PF , now I have PF and TTS and tenosynovitis in my FHL tendon and a fibroma and RSD all in the same foot... I feel waiting does and will cause other problems , I am living proof of it ... I hurt my foot at work so it is a workers comp case . I am at the mercy of WC . I feel it has been very unfair to me , and in the end who suffers for it ? I do . I spend most of my time waiting, waiting for tests and waiting for approvels... It took them almost 5 months last year for me to get an approvel for go see a foot specialist and to get a diagnosis on the RSD . That means all that time I had no treatment for it . With RSD early treatment is very important ...

I do have permanent damage now and I feel it is from waiting ....

I spent to much time on blaming , now I am focusing on being positive and healing .

I wish you all the best , I hope I answered your question . I am sure you will get others with their opinion , this is only mine .

Are you having tt surgery or are you just thinking about it ? Laurie R

Re: How Long Is Too Long To Wait For TT Release?

Sharon W on 3/19/02 at 07:10 (076808)

Laurie,

I was interested to read your post because I share Mike's concern -- what if those 'conservative measures' just aren't WORKING for you, and your condition is steadily getting WORSE while your DRs are trying one non-surgical treatment after another? You may say to yourself, 'I can stand this much pain, I can live with it if I have to' but what is it doing to your body? I have read physician posts on this board saying that if nerve conduction tests show damage, it indicates that there is PERMANENT damage, not just temporary compression. And at least one of them has expressed the opinion that ONLY if nerve conduction tests showed damage to the posterior tibial nerve and/or its branches would he consider TTS surgery. To me, it makes no sense to wait until the patient has developed permanent (and therefore, presumably UNREPAIRABLE)damage before attempting surgery to correct the problem! And as you brought up, Laurie, with the passage of time you can also develop tenosynovitis or RSD or other chronic pain conditions. It seems to me that the Dr. and patient need to DISCUSS surgery before that happens, put everything on the table so the patient knows all the risks and possible benefits, and make a decision about whether to treat the condition with surgery BEFORE it reaches that point.

But that is just my opinion, and I have not been through the surgery myself.

-- Sharon

Re: Sharon

wendyn on 3/19/02 at 07:29 (076810)

I'm sure that Laurie will explain her situation when she reads your post...but in her case (and in mine) the diagnosis of RSD is the reason doctor's are so hesitant to do surgery.

In Laurie's case, the first goal was to try to control her RSD - then pursue surgery only if necessary. With RSD surgery has to be really weighed carefully. Laurie has been through many doctor's (who seemed to have wored well together to form a plan of attack) and all have agreed that this is the right approach in her particular case.

Had her podiatrist rushed to do surgery a year or two ago, without realizing that she has RSD - the results most likely would have been disastrous.

Re: How Long Is Too Long To Wait For TT Release?

wendyn on 3/19/02 at 07:35 (076813)

Sorry Laurie - now I see your post ( that disadvantage of reading in reverse)!!!!!!!

Re: How Long Is Too Long To Wait For TT Release?

Laurie R on 3/19/02 at 11:44 (076830)

Hi Sharon , I appreciate your input , in my case as Wendy said , thank God my Pod did not rush into any type of surgery . A year and a hald ago we did not know I had RSD . YOu have to be very careful when you have RSD and surgery . RSD in itself is very complex. Then when they found out I had RSD their main concern was to treat it .

I don't think in the begining of my PF that any doctor could of predicated that I would end up with nerve damage or RSD or any of the other things I have .. My main problem was not my Pod it was Workers comp making me wait to see specialists and for tests....

I do agree with part of what you are saying , but it is not always that easy to put things on the table for the best outcome . I would not want a doctor to do surgery just to do it in fear that maybe one day I would have something or not .. I hope this makes sence . I do understand what you are saying though .

Laurie R

Re: How Long Is Too Long To Wait For TT Release?

Sharon W on 3/19/02 at 12:15 (076838)

Laurie,

Good luck to you in your surgery; I hope it all works out the way you want it to.

-- Sharon

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Donna SL on 3/19/02 at 13:51 (076843)

Sharon, Mike

I saw where you mentioned that some physicians on this board have said that if the ncv test is positive that there is permanant damage. That is not true. It might be good to get the proper information from a neurologist, neurosurgeon, physiatrist, etc., who are famailiar with nerve injuries, or read, and do research for the correct facts. Nerves do heal, just like any other part of your body, once the pressure is removed, or swelling is relieved even after many years. Even from much more serious injuries than just compression injuries like TTS. The last thing any one should do is jump into surgery prematurely, and cause more trauma to the nerves, and the surrounding structures if it is not absolutely necessary. Only if all conservative methods have been exhausted, or a definite cause can be found in the area should surgery be considered.

I have metioned before that I had a very postive NCV test, with demyleination of the nerves, and even some motor axon injury to the nerve body themselves. My ncv test showed a lot of 'damage' That doesn't mean it's permanent. It just means the conduction has slowed, maybe even to a halt at times. My nerves have 'healed', and the proof of that is not only from the resolution of my symptoms, but in black in white on a recent NCV test that just recently registered normal nerve conduction. My nerves were pretty compressed, and getting more 'damaged' for several years, because no one had the sense to diagnose that is earlier.

Regardless once the source was treated conservatively the nerves did heal. They heal slowly, but there is no reason for them not to heal unless they have been severed with a knife or something, and there is no way for them to connect properly.

What usually happens in a compression type injury is the fibers surrounding the nerves get worn, like the coating on the electrical wire. Once the pressure is off the myelin sheath will grow back. If there has been some additional motor axon injury, once the muscles are reinervated (sp), then the strength will come back to the muscles too. In severe cases PT may be required to assist this. As I mentioned before it is critical to keep the nerves 'calm', with medications, etc., so other pathological conditions like chronic pain syndrome, and possibly RSD don't occur to the nervous system.

Laurie had a completely different kind of injury. The tenosynovitis, and the RSD was probably a result of a direct injury she substained rather than from delaying surgery. The RSD needed to be treated at the onset. RSD can sometimes occur very shortly after an injury. Her doctors were trying all conservative measures, because many times even tenosynovitis can resolve with conservative measures, and it was important for them to try that first. The RSD was the important thing to be recognized, and treated early (which unfortunatly wasn't) more so then the injury itself. A lot of this had to do as she mentioned with delay in getting the proper treatment in a timely fashion. In her case it was fortunate she didn't rush into surgery early w/o the recognition of the RSD. She also has some other rare complications like a fibroma which needs to be removed. Even Laurie's nerves, and other structures of her foot will heal after sugery. It's the RSD she's oncerned about. (Laurie, hope you don't mind me using this example in the post, and I got most of the facts right).

Donna

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Sharon W on 3/19/02 at 14:13 (076845)

Sorry, I should not have used the word 'permanent' -- it was an error. I meant electrical changes that persist after the pressure on the nerve has been relieved.

-- Sharon

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Donna SL on 3/19/02 at 14:31 (076846)

Sharon,

I don't know exactly what you mean by 'electrical charges', but if you are referring to the electrical, or shocking type pain that can occur, that should resolve once the nerves heal, and/or the chronic pain condition is treated, and resolved. It can take anywhere from months to over a year for nerves to heal depending on what nerves where injured, and the severity. I would hope the nerves still have 'electrical charges' to make them function.

Donna

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Sharon W on 3/19/02 at 14:40 (076848)

I did mean 'electrical changes' -- changes in the electrical conductivity of the nerve -- not 'electrical charges', which are necessary to healthy nerve functioning. And I stand corrected; you have obviously made a serious study of whether nerves can heal; I have not.

-- Sharon

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Donna SL on 3/19/02 at 15:02 (076850)

Sharon,

My error. Thought I saw electrical charges not changes. Regardless the nerves should resume normal functioning, and the conductivity time should increase once they are healed.

Donna

Re: as long as needed

Tammie on 3/19/02 at 15:12 (076852)

I hope I am not butting in here but I would like to say something. I to thought about waiting to long to try the surgery and my husband started asking the dr. about why they just dont do it and fix it instead of waiting and ( in hubbys words playing around ) The Dr. told him this, He said yes we can do surgery today , BUT I cannot promise that it will be 100% not even 75% and I cant promise that more damage or worse damage could not be done.He said we would try 3 cortisone shots and Pt and orthodics and if those did not work then we would discuss surgery!

I started seeing this dr. in Feb and had surgery April 17. Ok well then when things were not going to well and the pain became worse and worse he did the next surgery Aug 31 For the tts, I did not ever have a MRI, Nerve testing but he felt positive that he knew it was tts. It is now March almost a year later and I am worse off than ever, I did not think pain could ever be worse then what i was feeling, but surprise it is much much worse.I might add that I had seen 2 orthos and 3 pods and a primary. Two of the dr.s stated they felt I had much to much surgery and definetly to close together in time not allowing for total pain relief.

Now I have two dr.s telling me that they believe I have RSD, why how or what made this happen I really dont understand, but I do know this I am not totaly against surgery, not at all BUT I in my case have learned sometimes it seems like a terribly long time healing and you get restless and just want it over and get back to your old life.But sometimes rushing into things without giving the proper time to try things and really give them a chance and even consulting a few dr,s for advice might be the better option. If you are in unbearable pain then this needs to be addresed also, and if the painis affecting your emotions then this to needs to be addressed, if you are not getting proper rest that should be addresed also. You see if you are in pain so bad that you cannot sleep and you feel like a dark cloud is over you it is time to find a Dr. to help with this.

It is amazing how different you might feel when you get a good night sleep, and some pain relief. I only could guess at what happened to me, maybe nobody or nothing is at fault for the predicitiment I am in , but I will always wonder if I did not have the two surgeries if I would be in better shape. In fairness to Dr. I will say I was a difficult patient as I hated being at home and sitting around , I did things I should not of but was it enough to cause this damage to myself I will never know. This is why I am saying , Please get all the facts all of them research yourself and aske them questions and talk to a few DR.s to see what they agree on. Then if you are sure you can accept a possibility of being worse off then make your decision, because it can happen I am proof. But then on the other hand I could be one that had better luck and be one that posts that all is wonderful and no trouble. Because you see if you are the lucky one to be healed you wouldnt hang here , you would be enjoying being able to do what you were missing!

The only reason i post this way is just to show you that you have to be sure of what you do what ever and if it is surgery , you need to be ready to do what the dr. tells you to do , not half way or try to be super man , and do more, you have to commit yourself to doing all you can to get the best results! From what I keep being told the damage is done and for me now I have to see a pain management Dr. to see what they can help me with.As they are telling me If it is true that this is RSD it is a lifetime dx it can be treated and in some what a controlled but can also spread and become worse if I dont have it treated. I didnt start off with this , this has happened after the fact.So please just be sure of what you are doing and have no doubts when you get up on that table. If you do get down and wait as what is one more day or week or month for that matter. Please take care

Re: as long as needed

Sharon W on 3/19/02 at 17:57 (076873)

Tammie,

RSD sounds horrible, and did a search on it so I know it is a reflex pain syndrome, but I really don't understand how it works. I'm so sorry you are suffering with it.

You are not 'butting in'; I appreciate your comments and your concern. And you're right; I AM in a blue funk today and feeling sorry for myself. I'm more than a little frustrated that none of the treatments so far seem to have really worked for me. And you were also right that I'm in pain today -- in spite of my new walking cast that I was so happy with, in spite of all the other 'conservative treatments,' and in spite of the fact that I haven't been on my feet much today! Just a 'bad day,' I guess...

But I am also upset because my daughter saw a prominent local hematologist yesterday. She had to wait until she was 16 to see him, even though she has already had anemia for about 2 years. He is really our last hope because none of the other doctors have been able to figure out what is going on with her. He says her anemia may be 'secondary' -- cause by another disease -- and he says he may have to take a bone marrow sample if he doesn't like the result of the blood labs he had drawn. She is scheduled to see him again next Thursday, which is ALSO the date of my appointment with the neurologist, the one who is supposed to do nerve the nerve conduction tests on me. I'm afraid I won't like the news that either one of these doctors will have for me.

Anyway, I realize I was projecting some really negative energy onto the message board, and I apologize.

I am NOT, by the way, determined to rush headlong toward TTS surgery -- I've seen the warnigns and the horror stories on this board, and I have no desire to add my own tale of woe to all the rest.

-- Sharon

Re: never a need to apoligize for feeling

Tammie on 3/19/02 at 19:18 (076893)

Sharon,I am sorry I cant really explain this RSD as I am learning about it myself, I have been waiting for a appt. with pain management! My primary dr. is in the midst of office moving and will not be in her new place till april. She was supposed to make me a appt. and I have heard nothing at this point. But wait patiently as what I have heard and read about this I am not to anxious to find out, as then it might be real and I will have no option but to deal with it. But I will do this , as I want to help myself in some small way to find some of my life that was lost.

Untill this time I want to help anyone that I can to see there are two sides to this and for those who choose the surgery route just be as informed as you can and participate in your care! Ask a million questions and really listen to the answers and above all work with your Dr, not against the very thing you went thru to have a chance at a better life with your feet!

I am sorry that you are in that blue type funk, I am very well aware of what you are saying as I tend to live in that myself, till lately and the reason I am leaving that blue funk behind is I met a wonderful caring primary Dr. who heard my plea and seen a way to help me out of it! I have never ever been a medicine taker not even a asprin or tylenol, I plain hated meds of any kind! Well One day the pain and depression was so bad that I became scared for my saftey, and made this call to this dr. and when I got there I was blessed with a angel who seen past the outer shell and seen in side . She heard my cry she heard my plea, and with this she assured me that there was help. I am now on Paxil and I must say I am feeling much more relaxed and not afraid for myself anylonger! The next best thing she did for me is help me get some much needed sleep, she also did not take the pain I said and felt and dismiss it as had been done she said No I did not have to constantly be in pain not in this modern world of wonderful medicines to help . She prescribed Ultram for pain and made me feel comfortable with taing all that I need till I see a pain specialist! Helping me ease my fears of addicition and being crazy cause how can i still feel so much pain. So I suggest this to u or anyone else in this dark cloud, there is HELP you do not have to feel this way , find a Dr. who hears you and really listens and wants to help you, it makes waiting and living so much better. I the one who hates going to Dr.s and using medicine is now very grateful that it is there.
PLEASE do not apoligize for any feeling you have my friend as we all have been there and walked with the fear and pain and neverending plight! It is ok to express any way you like we are your friends and we understand it is ok! Noone here will mind as we know it is difficult and a friend is one who is there thru the good and most of all thru the bad of times so know that we are here for you with anything we can help you with even if it is a sounding board or even if it is to offer a hand in friendship with a big hug! I am happy that you posted and I admire your courage as this is not easy and you will get threw this and we will be here to say we are so happy for you and we knew things would look up in your life! Please if you feel the need find a Dr. who will help you thru the hard times I am proof that depression is something that goes with chronic pain and stress and it can be treated! Dont be hard on yourself my friend and give yourself a break, love yourself and it is ok to take care of U!!!! Hugs to u and hope tomorrow the sun peaks out just for u!

Re: How Long Is Too Long To Wait For TT Release?

cindyp@gte.net on 3/19/02 at 20:25 (076912)

Well having jumped into the fray I will add my 25cents. When you look in the mirror one day and say ENOUGH I am not going to live like this anymore. When they stick a fork and you are done. When you cannot and will not take another day of pain.Now each persons threshold is different mine was almost gosh when I think back over ten years and it getting worse everyday. It's up to you.

Re: never a need to apoligize for feeling

Sharon W on 3/19/02 at 21:16 (076919)

Tammie,

I think I understand what you are saying about not really WANTING to find out everything about RSD, that information might be very hard to hear, because when it happens it will be 'real' and you will have to deal with it. From what I've read so far, RSD is MUCH worse than tarsal tunnel, and I am still having trouble sometimes really BELIEVING that I have tarsal tunnel! When I'm feeling good, I want SO MUCH to believe that it's not 'real'... that if I just put it out of my mind, it will go away.

Yes, I have been thinking of going to see a pain Dr. like you did; I know that when I am in pain I am grouchy and hard to live with, and that is not how I usually am. So I try to get away from people, because I don't want to upset people around me by being grouchy. But that leaves me feeling really ISOLATED, like I'm facing this foot thing ALONE, even though my husband is a SAINT the way he puts up with all of this. Do you know what I mean?

Thank you for being so understanding; it is important, sometimes, to be able to express these things to someone who really KNOWS what you're talking about & understands what you are feeling.

-- Sharon

Re: I understand more than u think

Tammie on 3/20/02 at 16:35 (077022)

I totaly understand I really do on all aspects! The isolated feeling also ! It is a bit scary I can say that! Please look into finding a Dr. to help you with the emotional issues and pain! Really If you dont believe me ,, do a search on my name ! You will see how crazy I was making myself! I am now feeling much more in control of my emotions I beleive it is do to the paxil. I was embarresed at first but now I am thankful! It has made a huge difference in me and my life! So take care my friend and remember what I said IT IS OK to take care of yourself . Anyway you need to be taken care of! Hugs to u !

Re: sounds as tho u might have had sucess?

Tammie on 3/20/02 at 16:42 (077024)

Sounds as tho u have had sucess! I really hope it has worked for you and anyone else that has got the surgery! I had hoped it would be for me to ! Unfortuantly I am still here a year later and much worse after 2 surgeries! I thougth I was going to be healed but unfortuantly my foot and body had other ideas about healing. So I really love to hear others get sucess as it makes me feel there is hope for some people! Would hate to think that all of us end up on the bad side of the coin(smile) I am always happy for others to share there good results as it really does feel good to know some have really been healed and got to return to there life! Thanks for sharing!

Re: How Long Is Too Long To Wait For TT Release?

Ed Davis, DPM on 3/21/02 at 19:22 (077151)

I wish we had more concrete information from which to give you an answer with the force of statistical backup. My experience is that individuals who wait too long to treat TTS have a much poorer prognosis.

How long is too long? Again, not a lot of concrete information. I would certainly be inclined to move forward with surgical treatment if the NCV shows significant changes confirming TTS. My feeling is that the risks of surgical treatment outweigh the risks of allowing disease progression.

I have some individuals with abnormal NCV in my office who do not want surgery. I am repeating the NCV on a yearly basis in an attempt to give them an accurate assessment of the course of their disease and if delaying surgery is causing potential damage. I am lucky to have a highly skilled electromyographer in my area.
Ed

Re: How Long Is Too Long To Wait For TT Release?

Laurie R on 3/18/02 at 23:22 (076793)

Hi Mike , Let me say this , I will be having my tt release on April 9 th , I finally got my surgery date today . I started with my foot problems almost three years ago . All I can say is I started out with just PF , now I have PF and TTS and tenosynovitis in my FHL tendon and a fibroma and RSD all in the same foot... I feel waiting does and will cause other problems , I am living proof of it ... I hurt my foot at work so it is a workers comp case . I am at the mercy of WC . I feel it has been very unfair to me , and in the end who suffers for it ? I do . I spend most of my time waiting, waiting for tests and waiting for approvels... It took them almost 5 months last year for me to get an approvel for go see a foot specialist and to get a diagnosis on the RSD . That means all that time I had no treatment for it . With RSD early treatment is very important ...

I do have permanent damage now and I feel it is from waiting ....

I spent to much time on blaming , now I am focusing on being positive and healing .

I wish you all the best , I hope I answered your question . I am sure you will get others with their opinion , this is only mine .

Are you having tt surgery or are you just thinking about it ? Laurie R

Re: How Long Is Too Long To Wait For TT Release?

Sharon W on 3/19/02 at 07:10 (076808)

Laurie,

I was interested to read your post because I share Mike's concern -- what if those 'conservative measures' just aren't WORKING for you, and your condition is steadily getting WORSE while your DRs are trying one non-surgical treatment after another? You may say to yourself, 'I can stand this much pain, I can live with it if I have to' but what is it doing to your body? I have read physician posts on this board saying that if nerve conduction tests show damage, it indicates that there is PERMANENT damage, not just temporary compression. And at least one of them has expressed the opinion that ONLY if nerve conduction tests showed damage to the posterior tibial nerve and/or its branches would he consider TTS surgery. To me, it makes no sense to wait until the patient has developed permanent (and therefore, presumably UNREPAIRABLE)damage before attempting surgery to correct the problem! And as you brought up, Laurie, with the passage of time you can also develop tenosynovitis or RSD or other chronic pain conditions. It seems to me that the Dr. and patient need to DISCUSS surgery before that happens, put everything on the table so the patient knows all the risks and possible benefits, and make a decision about whether to treat the condition with surgery BEFORE it reaches that point.

But that is just my opinion, and I have not been through the surgery myself.

-- Sharon

Re: Sharon

wendyn on 3/19/02 at 07:29 (076810)

I'm sure that Laurie will explain her situation when she reads your post...but in her case (and in mine) the diagnosis of RSD is the reason doctor's are so hesitant to do surgery.

In Laurie's case, the first goal was to try to control her RSD - then pursue surgery only if necessary. With RSD surgery has to be really weighed carefully. Laurie has been through many doctor's (who seemed to have wored well together to form a plan of attack) and all have agreed that this is the right approach in her particular case.

Had her podiatrist rushed to do surgery a year or two ago, without realizing that she has RSD - the results most likely would have been disastrous.

Re: How Long Is Too Long To Wait For TT Release?

wendyn on 3/19/02 at 07:35 (076813)

Sorry Laurie - now I see your post ( that disadvantage of reading in reverse)!!!!!!!

Re: How Long Is Too Long To Wait For TT Release?

Laurie R on 3/19/02 at 11:44 (076830)

Hi Sharon , I appreciate your input , in my case as Wendy said , thank God my Pod did not rush into any type of surgery . A year and a hald ago we did not know I had RSD . YOu have to be very careful when you have RSD and surgery . RSD in itself is very complex. Then when they found out I had RSD their main concern was to treat it .

I don't think in the begining of my PF that any doctor could of predicated that I would end up with nerve damage or RSD or any of the other things I have .. My main problem was not my Pod it was Workers comp making me wait to see specialists and for tests....

I do agree with part of what you are saying , but it is not always that easy to put things on the table for the best outcome . I would not want a doctor to do surgery just to do it in fear that maybe one day I would have something or not .. I hope this makes sence . I do understand what you are saying though .

Laurie R

Re: How Long Is Too Long To Wait For TT Release?

Sharon W on 3/19/02 at 12:15 (076838)

Laurie,

Good luck to you in your surgery; I hope it all works out the way you want it to.

-- Sharon

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Donna SL on 3/19/02 at 13:51 (076843)

Sharon, Mike

I saw where you mentioned that some physicians on this board have said that if the ncv test is positive that there is permanant damage. That is not true. It might be good to get the proper information from a neurologist, neurosurgeon, physiatrist, etc., who are famailiar with nerve injuries, or read, and do research for the correct facts. Nerves do heal, just like any other part of your body, once the pressure is removed, or swelling is relieved even after many years. Even from much more serious injuries than just compression injuries like TTS. The last thing any one should do is jump into surgery prematurely, and cause more trauma to the nerves, and the surrounding structures if it is not absolutely necessary. Only if all conservative methods have been exhausted, or a definite cause can be found in the area should surgery be considered.

I have metioned before that I had a very postive NCV test, with demyleination of the nerves, and even some motor axon injury to the nerve body themselves. My ncv test showed a lot of 'damage' That doesn't mean it's permanent. It just means the conduction has slowed, maybe even to a halt at times. My nerves have 'healed', and the proof of that is not only from the resolution of my symptoms, but in black in white on a recent NCV test that just recently registered normal nerve conduction. My nerves were pretty compressed, and getting more 'damaged' for several years, because no one had the sense to diagnose that is earlier.

Regardless once the source was treated conservatively the nerves did heal. They heal slowly, but there is no reason for them not to heal unless they have been severed with a knife or something, and there is no way for them to connect properly.

What usually happens in a compression type injury is the fibers surrounding the nerves get worn, like the coating on the electrical wire. Once the pressure is off the myelin sheath will grow back. If there has been some additional motor axon injury, once the muscles are reinervated (sp), then the strength will come back to the muscles too. In severe cases PT may be required to assist this. As I mentioned before it is critical to keep the nerves 'calm', with medications, etc., so other pathological conditions like chronic pain syndrome, and possibly RSD don't occur to the nervous system.

Laurie had a completely different kind of injury. The tenosynovitis, and the RSD was probably a result of a direct injury she substained rather than from delaying surgery. The RSD needed to be treated at the onset. RSD can sometimes occur very shortly after an injury. Her doctors were trying all conservative measures, because many times even tenosynovitis can resolve with conservative measures, and it was important for them to try that first. The RSD was the important thing to be recognized, and treated early (which unfortunatly wasn't) more so then the injury itself. A lot of this had to do as she mentioned with delay in getting the proper treatment in a timely fashion. In her case it was fortunate she didn't rush into surgery early w/o the recognition of the RSD. She also has some other rare complications like a fibroma which needs to be removed. Even Laurie's nerves, and other structures of her foot will heal after sugery. It's the RSD she's oncerned about. (Laurie, hope you don't mind me using this example in the post, and I got most of the facts right).

Donna

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Sharon W on 3/19/02 at 14:13 (076845)

Sorry, I should not have used the word 'permanent' -- it was an error. I meant electrical changes that persist after the pressure on the nerve has been relieved.

-- Sharon

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Donna SL on 3/19/02 at 14:31 (076846)

Sharon,

I don't know exactly what you mean by 'electrical charges', but if you are referring to the electrical, or shocking type pain that can occur, that should resolve once the nerves heal, and/or the chronic pain condition is treated, and resolved. It can take anywhere from months to over a year for nerves to heal depending on what nerves where injured, and the severity. I would hope the nerves still have 'electrical charges' to make them function.

Donna

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Sharon W on 3/19/02 at 14:40 (076848)

I did mean 'electrical changes' -- changes in the electrical conductivity of the nerve -- not 'electrical charges', which are necessary to healthy nerve functioning. And I stand corrected; you have obviously made a serious study of whether nerves can heal; I have not.

-- Sharon

Re: Nerves Heal !!!! Re: How Long Is Too Long To Wait For TT Release?

Donna SL on 3/19/02 at 15:02 (076850)

Sharon,

My error. Thought I saw electrical charges not changes. Regardless the nerves should resume normal functioning, and the conductivity time should increase once they are healed.

Donna

Re: as long as needed

Tammie on 3/19/02 at 15:12 (076852)

I hope I am not butting in here but I would like to say something. I to thought about waiting to long to try the surgery and my husband started asking the dr. about why they just dont do it and fix it instead of waiting and ( in hubbys words playing around ) The Dr. told him this, He said yes we can do surgery today , BUT I cannot promise that it will be 100% not even 75% and I cant promise that more damage or worse damage could not be done.He said we would try 3 cortisone shots and Pt and orthodics and if those did not work then we would discuss surgery!

I started seeing this dr. in Feb and had surgery April 17. Ok well then when things were not going to well and the pain became worse and worse he did the next surgery Aug 31 For the tts, I did not ever have a MRI, Nerve testing but he felt positive that he knew it was tts. It is now March almost a year later and I am worse off than ever, I did not think pain could ever be worse then what i was feeling, but surprise it is much much worse.I might add that I had seen 2 orthos and 3 pods and a primary. Two of the dr.s stated they felt I had much to much surgery and definetly to close together in time not allowing for total pain relief.

Now I have two dr.s telling me that they believe I have RSD, why how or what made this happen I really dont understand, but I do know this I am not totaly against surgery, not at all BUT I in my case have learned sometimes it seems like a terribly long time healing and you get restless and just want it over and get back to your old life.But sometimes rushing into things without giving the proper time to try things and really give them a chance and even consulting a few dr,s for advice might be the better option. If you are in unbearable pain then this needs to be addresed also, and if the painis affecting your emotions then this to needs to be addressed, if you are not getting proper rest that should be addresed also. You see if you are in pain so bad that you cannot sleep and you feel like a dark cloud is over you it is time to find a Dr. to help with this.

It is amazing how different you might feel when you get a good night sleep, and some pain relief. I only could guess at what happened to me, maybe nobody or nothing is at fault for the predicitiment I am in , but I will always wonder if I did not have the two surgeries if I would be in better shape. In fairness to Dr. I will say I was a difficult patient as I hated being at home and sitting around , I did things I should not of but was it enough to cause this damage to myself I will never know. This is why I am saying , Please get all the facts all of them research yourself and aske them questions and talk to a few DR.s to see what they agree on. Then if you are sure you can accept a possibility of being worse off then make your decision, because it can happen I am proof. But then on the other hand I could be one that had better luck and be one that posts that all is wonderful and no trouble. Because you see if you are the lucky one to be healed you wouldnt hang here , you would be enjoying being able to do what you were missing!

The only reason i post this way is just to show you that you have to be sure of what you do what ever and if it is surgery , you need to be ready to do what the dr. tells you to do , not half way or try to be super man , and do more, you have to commit yourself to doing all you can to get the best results! From what I keep being told the damage is done and for me now I have to see a pain management Dr. to see what they can help me with.As they are telling me If it is true that this is RSD it is a lifetime dx it can be treated and in some what a controlled but can also spread and become worse if I dont have it treated. I didnt start off with this , this has happened after the fact.So please just be sure of what you are doing and have no doubts when you get up on that table. If you do get down and wait as what is one more day or week or month for that matter. Please take care

Re: as long as needed

Sharon W on 3/19/02 at 17:57 (076873)

Tammie,

RSD sounds horrible, and did a search on it so I know it is a reflex pain syndrome, but I really don't understand how it works. I'm so sorry you are suffering with it.

You are not 'butting in'; I appreciate your comments and your concern. And you're right; I AM in a blue funk today and feeling sorry for myself. I'm more than a little frustrated that none of the treatments so far seem to have really worked for me. And you were also right that I'm in pain today -- in spite of my new walking cast that I was so happy with, in spite of all the other 'conservative treatments,' and in spite of the fact that I haven't been on my feet much today! Just a 'bad day,' I guess...

But I am also upset because my daughter saw a prominent local hematologist yesterday. She had to wait until she was 16 to see him, even though she has already had anemia for about 2 years. He is really our last hope because none of the other doctors have been able to figure out what is going on with her. He says her anemia may be 'secondary' -- cause by another disease -- and he says he may have to take a bone marrow sample if he doesn't like the result of the blood labs he had drawn. She is scheduled to see him again next Thursday, which is ALSO the date of my appointment with the neurologist, the one who is supposed to do nerve the nerve conduction tests on me. I'm afraid I won't like the news that either one of these doctors will have for me.

Anyway, I realize I was projecting some really negative energy onto the message board, and I apologize.

I am NOT, by the way, determined to rush headlong toward TTS surgery -- I've seen the warnigns and the horror stories on this board, and I have no desire to add my own tale of woe to all the rest.

-- Sharon

Re: never a need to apoligize for feeling

Tammie on 3/19/02 at 19:18 (076893)

Sharon,I am sorry I cant really explain this RSD as I am learning about it myself, I have been waiting for a appt. with pain management! My primary dr. is in the midst of office moving and will not be in her new place till april. She was supposed to make me a appt. and I have heard nothing at this point. But wait patiently as what I have heard and read about this I am not to anxious to find out, as then it might be real and I will have no option but to deal with it. But I will do this , as I want to help myself in some small way to find some of my life that was lost.

Untill this time I want to help anyone that I can to see there are two sides to this and for those who choose the surgery route just be as informed as you can and participate in your care! Ask a million questions and really listen to the answers and above all work with your Dr, not against the very thing you went thru to have a chance at a better life with your feet!

I am sorry that you are in that blue type funk, I am very well aware of what you are saying as I tend to live in that myself, till lately and the reason I am leaving that blue funk behind is I met a wonderful caring primary Dr. who heard my plea and seen a way to help me out of it! I have never ever been a medicine taker not even a asprin or tylenol, I plain hated meds of any kind! Well One day the pain and depression was so bad that I became scared for my saftey, and made this call to this dr. and when I got there I was blessed with a angel who seen past the outer shell and seen in side . She heard my cry she heard my plea, and with this she assured me that there was help. I am now on Paxil and I must say I am feeling much more relaxed and not afraid for myself anylonger! The next best thing she did for me is help me get some much needed sleep, she also did not take the pain I said and felt and dismiss it as had been done she said No I did not have to constantly be in pain not in this modern world of wonderful medicines to help . She prescribed Ultram for pain and made me feel comfortable with taing all that I need till I see a pain specialist! Helping me ease my fears of addicition and being crazy cause how can i still feel so much pain. So I suggest this to u or anyone else in this dark cloud, there is HELP you do not have to feel this way , find a Dr. who hears you and really listens and wants to help you, it makes waiting and living so much better. I the one who hates going to Dr.s and using medicine is now very grateful that it is there.
PLEASE do not apoligize for any feeling you have my friend as we all have been there and walked with the fear and pain and neverending plight! It is ok to express any way you like we are your friends and we understand it is ok! Noone here will mind as we know it is difficult and a friend is one who is there thru the good and most of all thru the bad of times so know that we are here for you with anything we can help you with even if it is a sounding board or even if it is to offer a hand in friendship with a big hug! I am happy that you posted and I admire your courage as this is not easy and you will get threw this and we will be here to say we are so happy for you and we knew things would look up in your life! Please if you feel the need find a Dr. who will help you thru the hard times I am proof that depression is something that goes with chronic pain and stress and it can be treated! Dont be hard on yourself my friend and give yourself a break, love yourself and it is ok to take care of U!!!! Hugs to u and hope tomorrow the sun peaks out just for u!

Re: How Long Is Too Long To Wait For TT Release?

cindyp@gte.net on 3/19/02 at 20:25 (076912)

Well having jumped into the fray I will add my 25cents. When you look in the mirror one day and say ENOUGH I am not going to live like this anymore. When they stick a fork and you are done. When you cannot and will not take another day of pain.Now each persons threshold is different mine was almost gosh when I think back over ten years and it getting worse everyday. It's up to you.

Re: never a need to apoligize for feeling

Sharon W on 3/19/02 at 21:16 (076919)

Tammie,

I think I understand what you are saying about not really WANTING to find out everything about RSD, that information might be very hard to hear, because when it happens it will be 'real' and you will have to deal with it. From what I've read so far, RSD is MUCH worse than tarsal tunnel, and I am still having trouble sometimes really BELIEVING that I have tarsal tunnel! When I'm feeling good, I want SO MUCH to believe that it's not 'real'... that if I just put it out of my mind, it will go away.

Yes, I have been thinking of going to see a pain Dr. like you did; I know that when I am in pain I am grouchy and hard to live with, and that is not how I usually am. So I try to get away from people, because I don't want to upset people around me by being grouchy. But that leaves me feeling really ISOLATED, like I'm facing this foot thing ALONE, even though my husband is a SAINT the way he puts up with all of this. Do you know what I mean?

Thank you for being so understanding; it is important, sometimes, to be able to express these things to someone who really KNOWS what you're talking about & understands what you are feeling.

-- Sharon

Re: I understand more than u think

Tammie on 3/20/02 at 16:35 (077022)

I totaly understand I really do on all aspects! The isolated feeling also ! It is a bit scary I can say that! Please look into finding a Dr. to help you with the emotional issues and pain! Really If you dont believe me ,, do a search on my name ! You will see how crazy I was making myself! I am now feeling much more in control of my emotions I beleive it is do to the paxil. I was embarresed at first but now I am thankful! It has made a huge difference in me and my life! So take care my friend and remember what I said IT IS OK to take care of yourself . Anyway you need to be taken care of! Hugs to u !

Re: sounds as tho u might have had sucess?

Tammie on 3/20/02 at 16:42 (077024)

Sounds as tho u have had sucess! I really hope it has worked for you and anyone else that has got the surgery! I had hoped it would be for me to ! Unfortuantly I am still here a year later and much worse after 2 surgeries! I thougth I was going to be healed but unfortuantly my foot and body had other ideas about healing. So I really love to hear others get sucess as it makes me feel there is hope for some people! Would hate to think that all of us end up on the bad side of the coin(smile) I am always happy for others to share there good results as it really does feel good to know some have really been healed and got to return to there life! Thanks for sharing!

Re: How Long Is Too Long To Wait For TT Release?

Ed Davis, DPM on 3/21/02 at 19:22 (077151)

I wish we had more concrete information from which to give you an answer with the force of statistical backup. My experience is that individuals who wait too long to treat TTS have a much poorer prognosis.

How long is too long? Again, not a lot of concrete information. I would certainly be inclined to move forward with surgical treatment if the NCV shows significant changes confirming TTS. My feeling is that the risks of surgical treatment outweigh the risks of allowing disease progression.

I have some individuals with abnormal NCV in my office who do not want surgery. I am repeating the NCV on a yearly basis in an attempt to give them an accurate assessment of the course of their disease and if delaying surgery is causing potential damage. I am lucky to have a highly skilled electromyographer in my area.
Ed