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My TTS Update

Posted by Kerig P. on 4/17/03 at 20:33 (116460)

Hello again!
I posted a a few questions about my battle with TTS a few weeks ago and received an overwhelming response. Unfortunately I have not gotten any better during that time, but today I just saw my Orthopedic Surgeon and this visit makes me feel like I have more questions than what he had answered.

First off, as I had mentioned earlier, the OS took me off of the Ultram that I had been taking for a year and put me on Ultracet (Tramadol) for the last 3 weeks, which did absolutely nothing for me. I mentioned this to him and asked if there was something else that I could take for the pain, and he answered with a resounding 'no'. He said that my TTS is not going to go away with drugs (I agree), and that he did not want me to become dependant upon them. I mentioned what had been said on this board, and what Dr. Davis said about Ultram, which was a BIG mistake because the OS seemed to get somewhat agitated by me second-guessing him. I understand why this probably bothered him, but after 9 doctors and 2 years of pain, I'm going to second-guess ALL doctors now.

Well, I asked if I could stop taking the Ultracet and put back on the Ultram, which he agreed to, but only for a short period of time (he only prescribed 30 tablets, taken 2 times a day). Again he cited that he did not want me to become accustomed to any drugs, and that drugs were not going to solve my problem. Unfortunately the pain in my feet has become so bad that I've been having a hard time functioning at work even though I sit all day (I design websites). When I come home I am so exhausted that I soak my feet in very cold water and lay down and immediately fall asleep for a few hours. All of this I had explained to him, with little response.

Also, over that last 2 weeks I've been to see a physical therapist, which did help me regain slight mobility that seems to have dwindled away over the last few months. The PT also showed me many stretching exercises to do at home, which I do several times a day. The Orthopedic Surgeon did not renew for me to see the PT, but wanted me to continue with my daily exercises.

Additionally, after a 2 week wait, my orthodics came back with the modifications that were made. I've only been breaking them in for that last 6 days, but they feel more painful than ever. I will probably have to take them back once again to be adjusted So there goes another 2 weeks.

The Orthopedic Surgeon also said today that he would not consider surgery for my TTS until 6 months have passed from the time I begin wearing the orthodics daily. He implied that it would be the orthodics that would correct my TTS. Has anyone here been completely healed by orthodics alone?

I also asked if an MRI should be done on my ankles and feet, and he said that since my TTS is bilateral, it would be doubtful that an MRI would show anything, but if it had been only on one foot, then he would (I feel that a taste of heaven would be if my TTS was restricted to only ONE of my feet).

So now I don't see the OS for another 6 weeks, and in the meantime I hope and pray that during this time the orthodics and stretching exercises will miraculously make me begin to feel better. Am I right in feeling that I'm not attacking this aggressively enough? I see another summer wasted in pain while I watch my children grow as dad becomes immobile because...well to most people it sounds silly and unimportant...but because my feet hurt.

Thanks for listening and I'm open to all thoughts, experiences and advice!

-Kerig

Re: My TTS Update

Pam S. on 4/17/03 at 22:14 (116475)

Dear Kerig:
My heart goes out to you that you cannot play with your children. I think your OS sounds a bit harsh. Maybe you should research another OS or pod who is knowledgeable about TTS and see what he or she would advise. You could try Neurontin for nerve pain. It does help many of us. Alot has been written about it on these posts.

I know I am in the minority here, but I would swear the orthodics made me worse. Too hard or too soft, too much support and hundreds of dollars later they are collecting dust. I thought they irritated my nerve more and one PT i was thought my hard ones threw me into TTS to begin with . I do not know if that is true or not, but they were so hard and I was just walking like crazy in them thinking I was helping myself. Once I stopped wearing them I got a little better but I am very careful with my shoes. When I exercise, I wear Brooks running shoes (not for running of course) and I use this velcro strap thing that supports my foot/ankle. I have often wondered if I should try one of those Bio-Mechanical experts for orthodics but I am so tired of it all for now. By the way, pain is exhausting. No wonder you are sleeping. I do too.

Have you noticed the discussions about the compressions socks? Lara T is the expert on these. These have helped me these days. Maybe they would help you too. It is worth a try.

My MRI on the foot I had released showed no mass but the surgery did help even thou my foot is not exactly perfect. I think if you have a very skilled surgeon they know what to do. I am curious about that question and have posted that in the 'ask the foot drs' section. I hope one of them answers that. It is a good question.

Good luck. I understand your time with your kids is precious. Life does go by fast and we want to make the best of it all. Pam

Re: My TTS Update

Sharon W on 4/18/03 at 10:14 (116521)

Kerig,

I don't know what to tell you. You are DEFINITELY being under-medicated for pain, but if you prefer to continue with a doctor who has that attitude, that's your choice to make. Some doctors just don't BELIEVE in pain control, and yours is obviously one of them.

I was under-medicated for pain during the first 7 months after my TTS diagnosis, and I suffered quite a bit. Am I proud of that, proud that I could 'take it'? Do I think it makes me a better person to have gone through that without adequate pain control? No. It was a mistake not to insist on effective pain meds a lot earlier. I should have insisted, demanded, pleaded, cajoled -- whatever it took. If necessary I should even have kept changing doctors until I finally found someone who would prescribe me something that could make my quality of life more reasonable.

By the way, Ultram and Ultracet are the same drug (tramadol) except that Ultracet contains Tylenol and Ultram doesn't.

Sharon
.

Re: My TTS Update

lara t on 4/18/03 at 10:56 (116524)

Thanks Pam. NOt sure what an expert on 'compression socks' is, or that I qualify, but I do seem to be their biggest cheerleader - probably becuase I've gotten the most benefit from them? I do have a bias that compression socks should be tried in many cases, which doesn't seem to be the SOP (although I believe it is for my pod). They are relatively easy (unless you have seriously arthritic hands - I have VERY mild arthritis and do fine), non-invasive, relatively inexpensive ($10-20), and easily reversible if they don't work (you just take the socks off - at least those who have had an adverse reaction have never indicated otherwise - I don't know cuz they worked magic for me). For me they resulted in a 90% improvement in my quality of life (from fantasyzing about amputation to a life with everything it used to have except sports & walks in the park - but I do have an excuse not to do housework : )

Re: My TTS Update

Kerig P. on 4/18/03 at 11:02 (116526)

Lara,
What brand of compression socks do you use, and where did you get them? I did a web search and have found so many different brands and levels of compression that I'm confused as the where to begin. Thanks!
-Kerig

Re: My TTS Update

Lynda S. on 4/18/03 at 16:59 (116551)

Kerig:

I have had PF for over ten years now. Have gone through two failed surgeries, and before that had my feet taped, cortisone shots, several different orthotics, etc. I then was referred to a pain clinic where I was put on Nortriptyline 150 mg and Neurontin 300 mg, plus Ultram when needed. I don't like having to this all the time, but it has given me my life back. I remember all the weekends when something would come up that would require me to be on my feet and I would decline, knowing I would be in agony. With the pain medicine, I know my feet still have a limit, but as I said my life is back. I don't know what I would do if a doctor said I couldn't take these any more. I hope you get some resolution to your PF, whether it be by all the modalities they suggest, surgery, or medicine.

Lynda S.

Re: My TTS Update

Pam S. on 4/18/03 at 21:33 (116555)

I so agree with what all these above have said. These meds were never even offered to me with my initial TTS. I had no idea in the world what to do except have the surgery. This is what the OS said to do and I just wanted to get it over with and get on with my life. The pod also told me the same thing. I was just crazed.

What is my point. Sometimes surgery is NOT the best solution at least not right away. WHAT IF the neurontin gets things under control as it has for many of us and you can live (and play with your kids) fairly normally. I sought out a great pharmacologist who assured me of the safety of this drug and she was all for my taking this as well as an antidepressant which helped me with fatigue and helped me with other pain issues I have too. If you think about it, surgery is sometimes not even an option for people who have chronic pain. That is why these drugs are available. That is why they have pain clinics etc. I know many people on these types of medications and no one is 'addicted' and their quality of life is so much better.

Re: brand of compression socks

lara t on 4/19/03 at 09:45 (116565)

KERIG asked: What brand of compression socks do you use, and where did you get them? I did a web search and have found so many different brands and levels of compression that I'm confused as the where to begin. Thanks!

I have a quick and easy answer, but don't know if it's helpful. My first pair of compression socks came from the doctor's office. He only carries the anklets, so when I wanted knee highs (so I had something to wear when 'dressing up') he gave me a prescription and I got what the medical supply store gave me. I never had to make a choice.

I believe my anklets came from EBI, and the knee-highs may be Jobs (who I think also make OTC compression socks). I suspect that what you are finding are the OTC. I actually have a couple of those that I bought when on vacation and unprepared (a mistake I made only once!). Then I just bought what was in the drug store I went in to.

My understanding is that socks come in OTC, mild, moderate, and something stronger but I don't know what they call that (severe doesn't sound right). The OTC's I've seen area always knee socks. As for the Rx socks, the milds come in anklet & knee socks. The moderates in knee socks and the 'something stronger' come in pantyhose. I've heard someone mention thigh-highs too, but I don't know about them.

I started off with a mild anklet and could tell it was helping very quickly, but it still took awhile (can't remember for sure, I think probably a few months) to get to a place where it has stabilized.

Re: brand of compression socks

Sharon W on 4/19/03 at 09:51 (116568)

Lara, Kerig,

Jobst is the brand most often dispensed by prescription at medical supply stores. They do make thigh-highs, but I don't know if they make them at all levels of compression.

Sharon
.

Re: brand of compression socks

lara t on 4/19/03 at 14:44 (116582)

Sharon is right - it's Jobst, jot Jobs. :-s

Re: orthotics

mike on 4/26/03 at 18:29 (117202)

As far as I was told- orthotics do not cure TTS, especially when it is severe enough to preclude a patient from weight bearing. They do take some time to break in so to speak. I dont believe the orthotics break in per se. It is our bodies that adapt to the change. Wouldnt it be rediculous if the orthotics needed to be broken into? they are there to set the foot in a different and more correct path, if they break in it means they surrender to the old path of the foot- defeats the purpose of wearing them. my orthotics were painful but after a while my foot has settled in just fine- patience is a virtue, give it a chance.

Re: orthotics

Kara G. on 4/28/03 at 20:08 (117304)

I'm not sure if your doctors have given you the same directions with the orthodics, but my doc said to wear them for 2 hours the first day and then increase the time by 2 hours everyday to 'break them in.' They were still painful to adjust to, but at least it still felt better than without them. If you are starting out on orthodics, you might want to try this approach, it's worth at shot right?

Re: orthotics

Kerig P. on 4/29/03 at 18:30 (117387)

Hi Kara,
I have tried to get used to the orthodics as you suggested, but my feet are just so bad that they make it impossible to walk at all with them in. So even during that 'break-in' period they make my toes burn like mad and the whole ball of my foot feel too raw to walk on. The pain that the orthodics cause in my arch is almost a 'good' pain, because I know that they're re-adjusting the way I walk. But if I can just get them past that toe pain, I know I can get used to them.
Thanks for the suggestion!
-Kerig