Help...I see my surgeon tomorrow...Posted by Rose on 2/17/04 at 18:21 (144508)
I am seeing my surgeon tomorrow. He wants to do added fascia release. I had release surgery 7 months ago and now seem to have TTS too, at least severe ankle pain and arch pain numb toes...and first step pain...worse than before the surgery. I am having to walk with a cane or crutches as I have been falling. Please....somebody...give me some suggestions and possibly some questions I should be asking tomorrow. Thank you so very very much.
Re: Help...I see my surgeon tomorrow...SteveG on 2/17/04 at 18:53 (144510)
Rose - What is it that he proposes to do - release the remaining lateral band of the fascia? Is this TTS surgery?? I would postpone the surgery and get a second (and maybe a third) opinion. The fact that the first surgery did not go well is reason to be very reluctant to have another one.
Re: Help...I see my surgeon tomorrow...Rose on 2/17/04 at 23:42 (144548)
Thanks. He wants to release the fascia some more. Now I have TTS they think and an ankle that will hardly hold me.
Re: Help...I see my surgeon tomorrow...Julie on 2/18/04 at 01:01 (144556)
Rose, I second what Steve has said. Do please see at least one more doctor, and do all your research before deciding. Unsuccessful PF surgery has been known to lead to complications, including TTS, and a second surgery may make matters much, much worse. Tammie's story is the saddest one: unsuccessful PF surgery, followed a few months later on her trusted surgeon's advice by TTS surgery, and for the past few years a limited life in constant pain. Do a search on her name. Of course I'm not saying that this is what would happen to you, but I would be deeply concerned about your having a second surgery done by a surgeon whose first surgery has badly failed.
Re: TTS Diagnosis?Julie on 2/18/04 at 01:32 (144560)
Rose, I see that you said they 'think' you have TTS. What has been done to determine this? You need to be very sure of the diagnosis before even beginning to consider surgery.
Re: TTS Diagnosis?Tammie on 2/19/04 at 19:06 (144742)
Excuse me Rose I am going to offer a bit of advice,I am not sure if it would make you more comfortable or not but here goes! First I know about pain and surgery that did not come out well! Would I do it again? Good question and I dont have a good answer but I do know this!
I would TAKE the extra time to be sure of what I had and to see all or as many Dr.s I needed to including different types I only seen a pod a ortho but the ortho was not a good choice I would try to find one who knew more about feet! A pod who was better known with a excellent rep! Maybe a sport medicine DR. . I would shop till they and I were sure of the right dx and sure the treatment was agreeable to all especially me!
In the mean time It is pain and it keeps you up with pain and you feel like not another day or min. Please find a pain management Dr. to help you with the pain! They are trained in relieving pain and what works the best! Man it sure would be alot easier to shop for Dr.s and answers when you have a full nights sleep! It does wonders for your mind and your over all thought process!
If they can help you with the pain a bit so that you can really research and find the right answers for yourself I know that you will be so happy with yourself as then you WILL know you were not deciding out of pain ,or lack of sleep or just to get it out of your life so that your life returns as it once was!!!
I hope it does and I hope that you really think about it as I wish I had ! Not that it couldnt have happened even if I had,but at least I would have know that I tryed everything possible to prevent what I have now. Which it is RSD or also known as CRPS. It is no game and it is not something that anyone would ever want to go thru! It NEVER goes away and I have to learn to live with pain for the rest of my life. I have had several surguries putting in a spinal stimulator and revissions of the leads as you can have spreadage if it wasnt treated soon enough to stop, which I get to expierance also do to My Pod did not dx me with the rsd soon enough and had me resting my foot for months when for rsd it is not good for. Please whatever even if you choose the surgery ,which I am not going to tell you it is wrong as it could work for you ,but then again let it work after you have tryed it all and seen many a Dr. who are sure what they are dealing with!
My intent is not to scare or stop anyone from doing what they choose, as It is YOUR right just like it is YOUR right to have several dr.s look and see if they all agree! Could save you and your family alot of heartache! Good Luck, it is very hard to decide as pain tends to rule our brain! I hope you keep letting us know how you are and if you do have the surgery or not I want to hear about it as maybe things will go right for you as someone has to have better things happen!
Re: TTS Diagnosis?wendyn on 2/19/04 at 23:15 (144756)
Tammie, I know you have been through a lot. Unfotunately, you have more experience than most of us with what can happen from surgery.
I think it's really great that you're still coming back here to share your expereince and advice with other people.
Re: TTS Diagnosis?Julie on 2/20/04 at 01:14 (144762)
I think so too: it's great that you do it, Tammie, and I'm so glad you wrote to Rose. I thought of you when I read her post, her situation is so similar to what yours was between surgeries, I was hoping you'd talk to her.
Re: TTS Diagnosis?Rose on 2/20/04 at 18:26 (144851)
They are going to run a nerve conduction test. So it is not confirmed as yet.
Re: TTS Diagnosis?Rose on 2/20/04 at 18:27 (144852)
I very much appreciate your comments
Re: TTS Diagnosis?Tammie on 2/20/04 at 19:34 (144855)
Thats a start! They never did that for me. I did have that test when they were dx me for the RSD tho. It was something I will always remember!
I just hope that you are certain about any surgery tho, as there are some treatments for tts that you can try before the surgery if I'm not mistaken.Sorry but my memory is also that is affected it is from the different medications they tell me. It sounds so like what happened to me, I had the surgery for the tts,and the last several Dr.s I have seen seem to think that it was not tts that I had. Out of curiousness you should ask your Dr. if he has ever delt with RSD does he know much about it. Just something again to ease some fears as my Pod did not know.Ok again good luck and let us know how you are doing !
Re: TTS Diagnosis?Rose on 2/20/04 at 21:14 (144867)
Thanks. What is the main difference between TTS and RSD?
Re: TTS Diagnosis?Pam S. on 2/20/04 at 23:23 (144883)
I just have to interject here. I jumped right in and had TTS surgery very quickly. I just wanted to get on with my life and get out of that insidious pain. I did have positive nerve conduction test so I do know I had TTS. Very long story but I did not try Neurontin, Elavil, PT or anything. I just JUMPED into surgery not knowing one thing about this type of surgery. After all, it was ONLY foot surgery. People seem to have foot surgery All the time, right? I wanted to FIX this FAST!!!!
After the surgery, I had so much pain all over my body. I cried all the time. One year later I was diagnosed with fibromyalgia. The foot surgery triggered this. They thought I had Lymes disease for a while. I do not have RSD but I do deal with some sort of pain on a daily basis. AND, my TTS pain is back after 4 years. I had no mass in the tunnel;therefore, it CAN come back. ( no one told me that) You should definitely have an MRI. I did that. I felt like I really did all the right things at the time. Had a top knotch surgeon, etc. I probably had fibro for a while as I was always a sensive type, pain wise, and the foot surgery was my trigger.
PLEASE understand none of us are telling you NOT to have surgery if that is necessary. JUST be sure to do alot of homework and be sure this is right for your condition and diagnosis.
I bet there are plenty of people out there who never post on these types of sites who have had complication free surgeries. We just happen to be the WATCH DOGS aren't we. I sure wish I had known more when I went into that surgery. It was painful and a very long recovery. Boy was I surprised. Please keep us posted. GOOD LUCK Warmly, pam
ps Tammie, God bless you I think of you and I think you are very strong. I am sure you are helping lots of people on that RSD sight.
ps Rose...TTS is an intrapped nerve in the tunnel area, inner ankle.. I do not know the definition of RSD. Tammie would be the expert on how it differs from RSD but they are for sure two different conditions.
Re: TTS Diagnosis?wendyn on 2/21/04 at 16:23 (144953)
Rose, in a nutshell:
TTS refers to the symptoms associated with the compression of one of the nerves in your foot.
RSD stands for Reflex Sympathetic Dystrophy. It's also known as Complex Regional Pain Syndrome. It's essentially a situation where the sympathetic nervous system malfunctions. It can start from something as simple as a minor injury or surgery. Compression synrdromes (like TTS) have also been known to rarely trigger RSD.
People who have RSD may experience color and temperature changes in the extremity affected, and RSD can spread into other limbs. RSD causes extreme pain - way out of proportion to the original injury.
Some of the worst things for RSD are immobilization ice, and surgery (which may be used if the condition is initially misdiagnosed). If the condition progresses, it can become debilitating.
RSD is a very rare condition, but there are a few of us on this site who have been diagnosed with it.
Re: TTS Diagnosis?Rose on 2/22/04 at 21:52 (145058)
Thanks soooo very much for all the great information. I surely will be very careful and I will keep you posted.
Re: How my Dr. explained how RSD worksTammie on 2/23/04 at 22:13 (145138)
This is how my Dr. explained what RSD does I hope I get it right.
He says we have sympathetic nerves that run threw our bodys. In your spine the nerves run and they get the pain signals which (are much more tramatic than the injury itself)The signals keep going to the brain never stopping to give your body a rest from pain it is like a short circuit.The aim is to treat the pain so as to give the symathetic nerves less fuel which means less pain. The more pain we can get in check helps so that there is less chance of spreadage.
The reason he put a stimulator in was to intercept those signals so they didnt reach the brain ( which hopefully would cut down pain)But the more area affected the harder to do. That is so why it is important to dx and get those sympathetic blocks,I guess. I hope I did this right ,I sometimes get it wrong as It is complicated to me. But I always wanted to know how this worked,and what actually caused the pain.
If I have this mixed up please feel free to correct me as I do not want to give false information. I always hesitate to answer some things as I am afraid I might get something wrong.
As for the differences I think Wendy says it well.
Re: sites for RSD infoTammie on 2/23/04 at 22:18 (145140)
http://www.rsdhope.org and http.neuro-mancer.mgh.harvard.edu
It is the neurology site RSD and there are alot of different things there if you need like help with ss or the ssd or questions about rsd or most anything you would like to know.I hope I dont break any rules by posting this. I had wished we would get more info here,I like to come here but if I need more about RSD I cant. If this doesnt come out do a search here as I know Brian gave me this site as well as maybe Janet,LaurieR.I hope this may answer some questions