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Feeling hopeless with my TTS

Posted by Chad H. on 1/29/01 at 11:12 (037644)

I am afraid this may be a long message, but here we go. In the spring of 1996, when I was 24 years old, I started feeling a pain in the inside of my right ankle when I walked on uneven terrain. The pain continued to get worse over the next year. I mainly only felt the pain when I would touch (or get bumped) on one specific area on the inside right ankle just under the anklebone. In early 1997, I went to see an orthopedic who put me through a bone scan, MRI, and other tests. He then said that I had a torn ligament and needed immediate surgery. I didn't like the sound of this, so I went to see another surgeon.

After some cortisone injections, which offered temporary relieve, I decided to go forward with TTS surgery to release the nerve November of 1997. The doctor said that the nerve was very badly entrapped in scar tissue, and that he had done the best he could. I was off the ankle for 1 week, and then began PT.

I got absolutely no relieve from the surgery, and I began to have pain under the outside anklebone of the same ankle. It was recommended that I go see a surgical podiatrist who specialized in ankles. After tests and X-rays, I was told that the previous doctor had not been aggressive enough with the TTS, and that I had a stretched or torn ligament on the outside ankle causing the additional pain (like a sprain). My Achilles also hurt due to tightness and the fact that I wasn't walking properly. I decided to go ahead with TTS surgery again in July of 1998. I was again told of scar tissue and entrapped nerves in my ankle. I was in a cast for 6 weeks. Once I got out of the cast and started PT, it was all I could do to get strength and some motion back. I again got no relieve from the original pain though.

In the fall of 1999, I went to see a pain management specialist. I had hoped that if I could control the pain, I could work the ankle more and gain back some range of motion. My movement is so restricted, and my ankle is so tight, that any movement causes severe, gut wrenching pain. He recommended that I first see another orthopedic before we begin any pain injections.

This orthopedic surgeon is considered to be one of the best foot and ankle doctors in the country. He said that it was unlikely that he could do anything better than the previous doctors had done with the TTS. He did say that I should have arthroscopic (sp) surgery to correct the torn ligament causing the additional pain on the outside ankle. He also referred me to a microvascular surgeon to discuss a new, experimental surgical technique. This technique would require harvesting small blood vessels from my leg, and the performing a vein wrap on the entrapped nerve. The vein would be wrapped around the nerve and would provide a protective cushion around the nerve. It would be important that I be on the ankle soon after surgery to keep the nerve moving so as to keep additional scar tissue from forming around the nerve.

The orthopedic and I decided to fix the ligament first, so that I could recover from that surgery before having the vein wrap. In November of 1999, I went under again and had surgery on the torn ligament. After 4 more weeks in a cast, I required 2 months of PT just to walk properly. I only got a marginal amount of relieve from the surgery.

So, here we are. January of 2001 and I am no better. I actually wish that I had never had surgery in the first place, but it is too late now. I am in constant pain. I am 28 years old, I am unable to run, and I walk with a limp. I take 2 Aleve twice a day just to dull the pain. I have no side-to-side motion in my ankle, and my Achilles is so tight that I can hardly keep my foot flat on the ground and bend my knee. I don't know what to do next. I know others have it much worse than I do, but this is still very depressing and hard for me to cope with.

I have started stretching and working the ankle again. I will admit that I have not been the best at keeping on top of my exercises. I would just like to see some light at the end of the tunnel (no pun intended).

Should I go see another doctor? Should I proceed with the vein wrap? Is there any hope?

I can give more details if you like. I don't even know what I am looking forů Maybe just some hope that I may one day live without pain and be able to run with my soon-to-be-born daughter!

Re: Feeling hopeless with my TTS

wendyn on 1/29/01 at 13:14 (037664)

Chad - your story just about broke my heart.

I too am fairly young (32). The biggest difference between you and I is that I haven't undergone any of the surgery - yet anyway. I have heard of the vein grafting but I don't know any real results on it. It really sounds as if you are doing the absolute best you can for yourself.

The only thing I would strongly recommend before you go much further would be a very good try at acupunctue from a well respected Traditional/Modern acupuncturist - preferably a doctor or a physiotherapist.

Acupuncture can stimulate healing and reduce inflammation. You don't need to believe in it for it to work, it works on animals and they don't believe in much. It may be worth it to see if that can at least provide some relief for you. I have had definate benefits from it.

Do they know what's caused all of this to happen to you in the first place? Do you have some real structural problems?

Re: Feeling hopeless with my TTS

Chad H on 1/29/01 at 14:41 (037672)

Thanks for the reply. I will check out acupuncture.

There is no obvious source for the original pain or damage. I played hockey in college, and could have damaged it there someway, but nothing I can remember. I have been very active my entire life.

I have had an incredible amount of swelling in the ankle ever since the first surgery. Even today, over 1 year since my third surgery, I can barely see my ankle bone.

Just reading the posts on this board and discussing my situation has inspired me. I am going to keep on top of this.

Re: Feeling hopeless with my TTS

Laurie R on 1/29/01 at 17:02 (037685)

Hi Chad,
All I can say is WOW !!!!!! You have been through so much. I don't have any advice for you ,but may I offer you my support. Thank God you found this site .This has been my main form of support . I am so happy that Wendy saw your post. She is the best...... I do have a question for you . Did you ever get into pain management?? Maybe that would help with your pain. I really truly feel for you . I'm also in pain all the time. I think they may have found out why. I just had a 'Tenogram ' done on Friday and it showed scar tissue all around my tendon and in it. The pain has been terrible . I also have PF and fluid in my foot and ankle . I have to wait for my Pod to read the report to see what he is going to do to fix it. My very best to you Chad. If I can help you in any way please feel free to ask. Laurie R

Re: Feeling hopeless with my TTS

Chad H on 1/30/01 at 11:03 (037742)

You know, I never did get into pain management. When I saw that pain management doctor, he immediately diagnosed me with neromas. These neromas just happened to be in the exact same spot where I was told by others I had TTS. He tried to tell me that my TTS was cured, but that the surgery caused neromas. He wanted to perform a procedure where he would stick a needle in the 'neroma' and zap it with electricity. That is fine, but I don't believe that my TTS is cured and that I now suffer from neromas. I never went back to see him.

I get very discouraged when I go see doctors and discuss this with them. None of them really understand this problem, but all of them are very anxious to operate. I am sorry if this sounds negative, this has been my experience. I was told by a doctor that there just isn't any money in ankles. All of the money is in knee surgeries and hips. Because of this, not many doctors specialize in ankles and TTS. It's supple and demand.

The very best thing we can do is continue to communicate with each other. Let's discuss what works and what doesn't. Let's expand this messge board and really start talking about the issues. I know I am new here, but this has been very exciting for me! We need to archive these threads so others can learn. I could read these posts all day long and learn from others experiences.

I spent some time on Steve's website yesterday. I even tried his ice water bucket trick last night, and I think it helped! I am committed to working my ankle and making it better. I think we can all work together and really make some progress. I feel better about this than I have in years! Let me know your thoughts about expanding and sharing our experiences with each other.

Re: Feeling hopeless with my TTS

Jeff D on 1/30/01 at 11:52 (037747)

I too have tried Steve's ice water bucket trick. It sure was cold, but did help me a little. This site and Steve's sure helps in dealing with the loneliness of this ... what ever it is. Friends and family just get tired of hearing about it.

Re: Feeling hopeless with my TTS

Laurie R on 1/30/01 at 12:53 (037753)

Hi Chad,
I think you have a wonderful attitude ,the reason I say this is you are trying everything to get better. With your hard work I am sure you will find the right doctor that is going to help you get out of your pain.

I am always ready to share anything that is going to help someone else. That is what this board is all about. So many people from this board have already helped me .

When I had my MRI it showed fluid in three different places in my foot and ankle . They did not do a very long study on my ankle ,it was mostly on my foot and fascia. That is why my Pod wanted me to have the tenogram . To see what was going on with the flexor hallucis longus tendon. I am still waiting for him to read the report.

Hang in there Chad. We are all here for you.

PS I did not know that Steve had a web site ,can you give me the address. Thanks and my very best to you. Laurie R

Re: Steve's website and other info

Chad H on 1/30/01 at 13:36 (037756)

Here is that website (below). I think we need more of this on the web. There is so little information out there, and most of it is all the same.

-Stay off the ankle, ice, therapy, surgery, and live happily ever after.

In the past 5 years I have seen very little mention of the 'truth'. I see this as a chronic condition. There is no quick fix.

Steve talks about magnet therapy. I tried this a few years ago with no noticable success. Has anyone else used magnets with any noticable improvement? What about these new Goode Wraps with rare earth semiconductors? (I can't believe I am even saying this, it sounds so crazy, but at this point I will try anything).

What else works or doesn't work? Aleve is my savior. I just hate being a slave to medication.

Tired massage with no success.

http://www.efn.org/~opal/tarsal1.html

Re: Feeling hopeless with my TTS

Matt L on 1/31/01 at 08:33 (037831)

You've been through quite a lot. I had a release in '96 with modest to moderate improvement for 2-3 years. Now I seem to be having more pain and am evaluating the benefit/risk of another surgery. My pain is not as severe as you describe. Regarding the 'vein wrap'- have you or are you seeing a Baltimore doctor- could be either Lew Schon or Lee Dellon- I believe both do some reconstructive tts surgery?

Re: Feeling hopeless with my TTS

Chad H on 1/31/01 at 09:14 (037834)

Matt, these doctors are actually in Columbus, OH. I have since moved to Chicago, but I haven't talked to any doctors here about my situation

How is your range of motion in your ankle? Becuase I have spent the last 5 years protecting my ankle, and trying not to induce pain, I have lost almost 100% of side to side range, and close to 50% of up and down range in my ankle. The tightness and atrophy is an additional source of pain now. This is what I am trying to work on with stretches and excercise.

Re: Feeling hopeless with my TTS

Matt L on 1/31/01 at 10:44 (037839)

The range of motion is not much of a problem for me although certain positions increase the pain.

My pain is suspected to be a result of scar tissue. As I understand it, if the scar tissue is on the outside of the nerve surgery can probably alleviate the problem. However, if the scar tissue is intertwined within the nerve its a much difficult situation ( as evidently you know). The problem is that they don't know until they open you up.

By the way, there is a world renown podiatrist in Chicago- Lowell Weil. They treat a lot of plantar fasciitis with ESWT which I'm sure you've read about on this website. I had the procedure for my PF last year.

Re: Feeling hopeless with my TTS

Kay S on 1/31/01 at 19:59 (037912)

Chad--if you live near Chicago, two of our new doctors on this board are probably very close to you. Their office is in Westmont. (Dr. Reid and Dr. Kosova) So if you are looking for a new doc, they are as close as your keyboard!
Kay

Re: Feeling hopeless with my TTS

Eileen on 2/04/01 at 09:17 (038162)

October 1997--'tarsul Tunnel release' done by a POd who didn't have a clue and really messed me up. Said he was going to fix it with a laser and then when he got in he said that he saw twice as much scar tissue as he had ever seen and tried to clear it away with only a 1' cut. Now I live on a massive amount of Neurontin and some Vicodin each day just to dull the pain enough to exist. What is this vein wrap thing and what Dr. in columbus, Oh. does it? I'm from Akron, OH. Good luck--- we know pain.

Re: Feeling hopeless with my TTS

Chad H on 2/04/01 at 12:39 (038169)

Eileen,

The last doctor I saw in Columbus was Dr. Thomas Lee. He is an othopedic in Columbus and he specializes in feet and ankles. He is an excellent, excellent doctor.

He recommended that I go see a micro-vascular surgeon who would perform the vein wrap. I don't have his name available right now. The vein wrap is just as I described. They take a vein from your leg and wrap the nerve to offer some protection and cushioning. I have also heard of a Fat wrap where they take fat and cushion the nerve with it.

Have you seen any other doctors since your surgery? What other types of opinions have you gotten?

I would recommend you go see Dr. Lee in Columbus. He can give you his advice for treatment. If you have only had surgery one time, and it was that much of a debacle, I would recommend getting more opinions and trying again. I think surgery can help in the hands of a skilled doctor.

Re: Feeling hopeless with my TTS

Janet C. on 2/05/01 at 00:01 (038203)

I just recently found this web site message board, and I am so amazed to read other people's experiences that are so similar to mine! I thought TTS was a rare disability, but it seems there are more people suffering from this terribly painful condition than I realized. I already wrote about my background of surgeries and treatments on the Social/Support Message Board (Long-Term, Chronic PF and TTS) so I'll try not to repeat myself too much. But I wish I'd never let any doctors touch my feet!
The pain has been so bad lately, that I have a really difficult time trying to go to sleep at night. Why does it seem to get worse at night? I haven't been doing much at all during the day. I went through two sets of ice packs last night, and I tried using the foot pillow I had made (which I find indispensible) to elevate my feet above the mattress. It hurts me to have my heels and the inside of my ankles resting on the mattress, and it even hurts my feet to have the blankets on them!
I've got prescriptions for Vicodin and Neurontin, but when the pain gets really severe, it makes me feel nauseated, and I don't want to take anything. For me, the pain becomes all mind-consuming, I can't think about anything else. I'll try to watch TV or read a book, but I can't concentrate. It doesn't seem fair to me that I should be suffering this amount of pain and have it not be killing me. The doctors don't seem to take it as seriously, because it's a chronic condition that you're going to have to learn to live with for the next 50 years! I used to think that 'natural' childbirth had to be the worst pain, until I ended up with PF and TTS. At least childbirth ends. (By the way, natural childbirth breathing techniques sometimes helps to get through the pain of TTS.)
The vein wrap sounds interesting, and although I'm really reluctant to undergo any more procedures, I will ask my doctor about it tomorrow. I am sorry for venting, but I am so grateful that this web site is available, it makes me feel better just knowing that other people can understand.

Re: Feeling hopeless with my TTS

Eileen on 2/06/01 at 12:47 (038304)

Thanks Chad. Before surgery by the podiatrist,I saw 3 orthopedic foot specialists, the 3rd being from THE Cleveland Clinic who said he DID NOT BELIEVE in TTS! The first 2 (local DR.s)told me to go to a pain clinic and learn to live with it. I went to the painc clinic where an osteopath did a 'maneuver' which severely sprained my left sacroiliac joint so that from that day, 03-10-97, I have been in unrelenting constant back pain too. At this point I am so afraid of doctors that the only place I have been since surgery, 06-10-97 is to a new pain clinic where I get my meds and go home.Every single doc, including my family doc who is a dearie, has given up on me. Every day my pain icreases as my musculo-skeletal 'framework' deteriorates. Today, I just found out that I may not be rehired--after teaching 31 years-- because I 'cannot perform my duties'. Five years ago--I played tennis, racquetball (always with younger people),golfed, walked 10-15 miles a week for fun, ice-skated,etc. Now nothing --even swimming hurts!
I have an article on the 'fat' wrap but it comes from a doctor in Japan. I have not heard about the'vein'wrap.I hear taking veins out of a leg can cause problems. You would think Cleveland clinic could do this, huh?!?!?

Re: Feeling hopeless with my TTS

thea on 2/13/01 at 08:23 (038804)

Have you tried acupuncture. I am at my wits end. My doctor doesn't want to do surgery and the cortizone really aggravated the nerves in my foot really bad. So I am trying acupunture. I have had three sessions, however haven't seen a difference. Dr. says it will take about 12 sessions to see a difference. The money I'm spending on this foot is crazy, and i have good insurance. If you've tried acupuncture give my your opinion on it.
I have an appointment with my 5th doctor in 5 months tomorrow. Maybe he'll give me some light on the next step (so i can go on with life). Thank you for listening.
Thea

Re: Feeling hopeless with my TTS

Chad H on 2/14/01 at 11:38 (038950)

I thought I would just post an update.

Since my original post, I have been stretching and working my ankle every night. It is interesting to hear everyone else's experience and advice. It seems that everyone's experience is different.

My TTS has not gotten worse over the years. My problem is that in an effort to protect my ankle, I have stopped moving it in certain ways. 18 weeks of cast time over the past 3 years hasn't helped. This has caused my ankle to atrophy. All the ligaments are tight and my calf muscle has shrunk. My range of motion is so limited, I can hardle move my ankle. Now, any movement causes pain. The problem extends from my knee to my toes.

I am trying to increase my range of motion. I'm not sure I ever expect my TTS to go away, but if I could get some movement back, I would be so much better off.

I will keep stretching and working the ankle. I will keep you posted on my progress.

Thank you so much for the support. This is a great source of information and support.

Re: Feeling hopeless with my TTS

wendyn on 1/29/01 at 13:14 (037664)

Chad - your story just about broke my heart.

I too am fairly young (32). The biggest difference between you and I is that I haven't undergone any of the surgery - yet anyway. I have heard of the vein grafting but I don't know any real results on it. It really sounds as if you are doing the absolute best you can for yourself.

The only thing I would strongly recommend before you go much further would be a very good try at acupunctue from a well respected Traditional/Modern acupuncturist - preferably a doctor or a physiotherapist.

Acupuncture can stimulate healing and reduce inflammation. You don't need to believe in it for it to work, it works on animals and they don't believe in much. It may be worth it to see if that can at least provide some relief for you. I have had definate benefits from it.

Do they know what's caused all of this to happen to you in the first place? Do you have some real structural problems?

Re: Feeling hopeless with my TTS

Chad H on 1/29/01 at 14:41 (037672)

Thanks for the reply. I will check out acupuncture.

There is no obvious source for the original pain or damage. I played hockey in college, and could have damaged it there someway, but nothing I can remember. I have been very active my entire life.

I have had an incredible amount of swelling in the ankle ever since the first surgery. Even today, over 1 year since my third surgery, I can barely see my ankle bone.

Just reading the posts on this board and discussing my situation has inspired me. I am going to keep on top of this.

Re: Feeling hopeless with my TTS

Laurie R on 1/29/01 at 17:02 (037685)

Hi Chad,
All I can say is WOW !!!!!! You have been through so much. I don't have any advice for you ,but may I offer you my support. Thank God you found this site .This has been my main form of support . I am so happy that Wendy saw your post. She is the best...... I do have a question for you . Did you ever get into pain management?? Maybe that would help with your pain. I really truly feel for you . I'm also in pain all the time. I think they may have found out why. I just had a 'Tenogram ' done on Friday and it showed scar tissue all around my tendon and in it. The pain has been terrible . I also have PF and fluid in my foot and ankle . I have to wait for my Pod to read the report to see what he is going to do to fix it. My very best to you Chad. If I can help you in any way please feel free to ask. Laurie R

Re: Feeling hopeless with my TTS

Chad H on 1/30/01 at 11:03 (037742)

You know, I never did get into pain management. When I saw that pain management doctor, he immediately diagnosed me with neromas. These neromas just happened to be in the exact same spot where I was told by others I had TTS. He tried to tell me that my TTS was cured, but that the surgery caused neromas. He wanted to perform a procedure where he would stick a needle in the 'neroma' and zap it with electricity. That is fine, but I don't believe that my TTS is cured and that I now suffer from neromas. I never went back to see him.

I get very discouraged when I go see doctors and discuss this with them. None of them really understand this problem, but all of them are very anxious to operate. I am sorry if this sounds negative, this has been my experience. I was told by a doctor that there just isn't any money in ankles. All of the money is in knee surgeries and hips. Because of this, not many doctors specialize in ankles and TTS. It's supple and demand.

The very best thing we can do is continue to communicate with each other. Let's discuss what works and what doesn't. Let's expand this messge board and really start talking about the issues. I know I am new here, but this has been very exciting for me! We need to archive these threads so others can learn. I could read these posts all day long and learn from others experiences.

I spent some time on Steve's website yesterday. I even tried his ice water bucket trick last night, and I think it helped! I am committed to working my ankle and making it better. I think we can all work together and really make some progress. I feel better about this than I have in years! Let me know your thoughts about expanding and sharing our experiences with each other.

Re: Feeling hopeless with my TTS

Jeff D on 1/30/01 at 11:52 (037747)

I too have tried Steve's ice water bucket trick. It sure was cold, but did help me a little. This site and Steve's sure helps in dealing with the loneliness of this ... what ever it is. Friends and family just get tired of hearing about it.

Re: Feeling hopeless with my TTS

Laurie R on 1/30/01 at 12:53 (037753)

Hi Chad,
I think you have a wonderful attitude ,the reason I say this is you are trying everything to get better. With your hard work I am sure you will find the right doctor that is going to help you get out of your pain.

I am always ready to share anything that is going to help someone else. That is what this board is all about. So many people from this board have already helped me .

When I had my MRI it showed fluid in three different places in my foot and ankle . They did not do a very long study on my ankle ,it was mostly on my foot and fascia. That is why my Pod wanted me to have the tenogram . To see what was going on with the flexor hallucis longus tendon. I am still waiting for him to read the report.

Hang in there Chad. We are all here for you.

PS I did not know that Steve had a web site ,can you give me the address. Thanks and my very best to you. Laurie R

Re: Steve's website and other info

Chad H on 1/30/01 at 13:36 (037756)

Here is that website (below). I think we need more of this on the web. There is so little information out there, and most of it is all the same.

-Stay off the ankle, ice, therapy, surgery, and live happily ever after.

In the past 5 years I have seen very little mention of the 'truth'. I see this as a chronic condition. There is no quick fix.

Steve talks about magnet therapy. I tried this a few years ago with no noticable success. Has anyone else used magnets with any noticable improvement? What about these new Goode Wraps with rare earth semiconductors? (I can't believe I am even saying this, it sounds so crazy, but at this point I will try anything).

What else works or doesn't work? Aleve is my savior. I just hate being a slave to medication.

Tired massage with no success.

http://www.efn.org/~opal/tarsal1.html

Re: Feeling hopeless with my TTS

Matt L on 1/31/01 at 08:33 (037831)

You've been through quite a lot. I had a release in '96 with modest to moderate improvement for 2-3 years. Now I seem to be having more pain and am evaluating the benefit/risk of another surgery. My pain is not as severe as you describe. Regarding the 'vein wrap'- have you or are you seeing a Baltimore doctor- could be either Lew Schon or Lee Dellon- I believe both do some reconstructive tts surgery?

Re: Feeling hopeless with my TTS

Chad H on 1/31/01 at 09:14 (037834)

Matt, these doctors are actually in Columbus, OH. I have since moved to Chicago, but I haven't talked to any doctors here about my situation

How is your range of motion in your ankle? Becuase I have spent the last 5 years protecting my ankle, and trying not to induce pain, I have lost almost 100% of side to side range, and close to 50% of up and down range in my ankle. The tightness and atrophy is an additional source of pain now. This is what I am trying to work on with stretches and excercise.

Re: Feeling hopeless with my TTS

Matt L on 1/31/01 at 10:44 (037839)

The range of motion is not much of a problem for me although certain positions increase the pain.

My pain is suspected to be a result of scar tissue. As I understand it, if the scar tissue is on the outside of the nerve surgery can probably alleviate the problem. However, if the scar tissue is intertwined within the nerve its a much difficult situation ( as evidently you know). The problem is that they don't know until they open you up.

By the way, there is a world renown podiatrist in Chicago- Lowell Weil. They treat a lot of plantar fasciitis with ESWT which I'm sure you've read about on this website. I had the procedure for my PF last year.

Re: Feeling hopeless with my TTS

Kay S on 1/31/01 at 19:59 (037912)

Chad--if you live near Chicago, two of our new doctors on this board are probably very close to you. Their office is in Westmont. (Dr. Reid and Dr. Kosova) So if you are looking for a new doc, they are as close as your keyboard!
Kay

Re: Feeling hopeless with my TTS

Eileen on 2/04/01 at 09:17 (038162)

October 1997--'tarsul Tunnel release' done by a POd who didn't have a clue and really messed me up. Said he was going to fix it with a laser and then when he got in he said that he saw twice as much scar tissue as he had ever seen and tried to clear it away with only a 1' cut. Now I live on a massive amount of Neurontin and some Vicodin each day just to dull the pain enough to exist. What is this vein wrap thing and what Dr. in columbus, Oh. does it? I'm from Akron, OH. Good luck--- we know pain.

Re: Feeling hopeless with my TTS

Chad H on 2/04/01 at 12:39 (038169)

Eileen,

The last doctor I saw in Columbus was Dr. Thomas Lee. He is an othopedic in Columbus and he specializes in feet and ankles. He is an excellent, excellent doctor.

He recommended that I go see a micro-vascular surgeon who would perform the vein wrap. I don't have his name available right now. The vein wrap is just as I described. They take a vein from your leg and wrap the nerve to offer some protection and cushioning. I have also heard of a Fat wrap where they take fat and cushion the nerve with it.

Have you seen any other doctors since your surgery? What other types of opinions have you gotten?

I would recommend you go see Dr. Lee in Columbus. He can give you his advice for treatment. If you have only had surgery one time, and it was that much of a debacle, I would recommend getting more opinions and trying again. I think surgery can help in the hands of a skilled doctor.

Re: Feeling hopeless with my TTS

Janet C. on 2/05/01 at 00:01 (038203)

I just recently found this web site message board, and I am so amazed to read other people's experiences that are so similar to mine! I thought TTS was a rare disability, but it seems there are more people suffering from this terribly painful condition than I realized. I already wrote about my background of surgeries and treatments on the Social/Support Message Board (Long-Term, Chronic PF and TTS) so I'll try not to repeat myself too much. But I wish I'd never let any doctors touch my feet!
The pain has been so bad lately, that I have a really difficult time trying to go to sleep at night. Why does it seem to get worse at night? I haven't been doing much at all during the day. I went through two sets of ice packs last night, and I tried using the foot pillow I had made (which I find indispensible) to elevate my feet above the mattress. It hurts me to have my heels and the inside of my ankles resting on the mattress, and it even hurts my feet to have the blankets on them!
I've got prescriptions for Vicodin and Neurontin, but when the pain gets really severe, it makes me feel nauseated, and I don't want to take anything. For me, the pain becomes all mind-consuming, I can't think about anything else. I'll try to watch TV or read a book, but I can't concentrate. It doesn't seem fair to me that I should be suffering this amount of pain and have it not be killing me. The doctors don't seem to take it as seriously, because it's a chronic condition that you're going to have to learn to live with for the next 50 years! I used to think that 'natural' childbirth had to be the worst pain, until I ended up with PF and TTS. At least childbirth ends. (By the way, natural childbirth breathing techniques sometimes helps to get through the pain of TTS.)
The vein wrap sounds interesting, and although I'm really reluctant to undergo any more procedures, I will ask my doctor about it tomorrow. I am sorry for venting, but I am so grateful that this web site is available, it makes me feel better just knowing that other people can understand.

Re: Feeling hopeless with my TTS

Eileen on 2/06/01 at 12:47 (038304)

Thanks Chad. Before surgery by the podiatrist,I saw 3 orthopedic foot specialists, the 3rd being from THE Cleveland Clinic who said he DID NOT BELIEVE in TTS! The first 2 (local DR.s)told me to go to a pain clinic and learn to live with it. I went to the painc clinic where an osteopath did a 'maneuver' which severely sprained my left sacroiliac joint so that from that day, 03-10-97, I have been in unrelenting constant back pain too. At this point I am so afraid of doctors that the only place I have been since surgery, 06-10-97 is to a new pain clinic where I get my meds and go home.Every single doc, including my family doc who is a dearie, has given up on me. Every day my pain icreases as my musculo-skeletal 'framework' deteriorates. Today, I just found out that I may not be rehired--after teaching 31 years-- because I 'cannot perform my duties'. Five years ago--I played tennis, racquetball (always with younger people),golfed, walked 10-15 miles a week for fun, ice-skated,etc. Now nothing --even swimming hurts!
I have an article on the 'fat' wrap but it comes from a doctor in Japan. I have not heard about the'vein'wrap.I hear taking veins out of a leg can cause problems. You would think Cleveland clinic could do this, huh?!?!?

Re: Feeling hopeless with my TTS

thea on 2/13/01 at 08:23 (038804)

Have you tried acupuncture. I am at my wits end. My doctor doesn't want to do surgery and the cortizone really aggravated the nerves in my foot really bad. So I am trying acupunture. I have had three sessions, however haven't seen a difference. Dr. says it will take about 12 sessions to see a difference. The money I'm spending on this foot is crazy, and i have good insurance. If you've tried acupuncture give my your opinion on it.
I have an appointment with my 5th doctor in 5 months tomorrow. Maybe he'll give me some light on the next step (so i can go on with life). Thank you for listening.
Thea

Re: Feeling hopeless with my TTS

Chad H on 2/14/01 at 11:38 (038950)

I thought I would just post an update.

Since my original post, I have been stretching and working my ankle every night. It is interesting to hear everyone else's experience and advice. It seems that everyone's experience is different.

My TTS has not gotten worse over the years. My problem is that in an effort to protect my ankle, I have stopped moving it in certain ways. 18 weeks of cast time over the past 3 years hasn't helped. This has caused my ankle to atrophy. All the ligaments are tight and my calf muscle has shrunk. My range of motion is so limited, I can hardle move my ankle. Now, any movement causes pain. The problem extends from my knee to my toes.

I am trying to increase my range of motion. I'm not sure I ever expect my TTS to go away, but if I could get some movement back, I would be so much better off.

I will keep stretching and working the ankle. I will keep you posted on my progress.

Thank you so much for the support. This is a great source of information and support.