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long history of pf, new diagnosis of TTS

Posted by lilly on 6/19/04 at 15:15 (153511)

I have supposedly had PF for 6 years (after going to three podiatrists). I had given up on treatment (two said i should feel better in the next several months after releasing me with orthotics, one suggested cutting the pf and i went for second opinion who said dont let do and sent me to a rheumatologist). I also went thru two rounds of physical therapy several years ago. I have had no treatment for the past two years as i had given up. I have completely changed my lifestyle and given up any time on my feet that is not necessary. Anyways, i recently heard of shock wave and decided to see if i would be appropriate for it. Well i went to an orthopaedic doctor this time and he said he doubts i have PF, but have TTS. I just had the nerve studies and a bone scan and he feels it confirms this. He seems to be recommending surgery but is leaving it up to me. Any suggestions for what i should try now? and if i go to a second opinion what type of doctor should i go to? Also, i have Bilateral TTS, is this common?? Should i be concerned with an underlying etiology causing this? Thank you for any advice.

Re: long history of pf, new diagnosis of TTS

LARA on 6/19/04 at 16:26 (153517)

Except that only took 3 years instead of six, that sounds very familiar to my history. I was misdiagnosed with PF (an easy thing to happen) for a long time. I was told my feet would get better (because PF frequently does). I have bilateral TTS - sort of. My feet experience the burn exactly the same, but if I treat one foot, both feet get better! I've asked several doctors about it and no one has an explanation, but one doctor said she had noticed the same thing with other patients.

Surgery is the only hope for 'cure'. However, most people aren't 'cured' by surgery - just better. Some for a long time, some for a few years. And some (a minority, maybe around 10%) are worse off after surgery. That's why most people on this board recommend surgery as a last option. I found that compression socks gave me back a very nice life.

I've heard that the ESWT is good for PF, but contraindicated for TTS.
If you check through the threads from teh past month of two, there are a couple of places where there are lists of lots of conservative treatments to try. NOthing works for everyone.

Re: long history of pf, new diagnosis of TTS

Gary T on 6/19/04 at 16:29 (153519)

Lilly,

The whole board is waiting to see how a Dr. Sandell from Minnesota is treating people on this board, Goose and Place. He has some new treatment that is supposed to fix PF, TTS, CTS and other ligament/muscle/tendon issues. One guy from MN (John from MN) who had PF for 5 years, claims Dr. Sandell fixed him in 2 months. He went through all the standard treatments including Shock Wave Therapy.

Dr. Sandell is supposedly going to be on this board Sunday where we can ask questions. I am watching this closely since I have had all treatments and do not want to have release surgery.

Re: long history of pf, new diagnosis of TTS

Marty in SLC on 6/20/04 at 12:05 (153546)

Lilly,

Ok tell us your symptoms and go get a second opinion to confirm you have TTS. It is not as common as PF and sometimes those with one have the other, I do. Don't give up hope you have found this web site. I have had it for 7 years now and have had surgery on one foot and will not get the other done until I have the other foot back to around 90% better, its at about 75% now. I have surgery a year and a half ago, it has been a long hard road but yes it is still improving. The body is an amazing thing. The other foot that I haven't had the surgery on is a bit better then it was most of the time.

Good luck,

Marty

Re: long history of pf, new diagnosis of TTS

lilly on 6/20/04 at 14:02 (153549)

The pain originally started with a sharp pain that would come and go every couple days and got progressively worse til the point i was walking on the outside of my feet and using crutches, and cried just to get up to go to the restroom. (mind you i was on an hmo at the time and couldnt get in to a podiatrist til seeing regular physician and that process took forever because she went off on maternity) I had pain originally at edge of ball of big toe and then at inner edge of bottom of the front edge of the heel. and eventually over the whole arch area. Worse days would burn. i had a pair of very poorly made orthotics after 6 months....and then a pair of very hard rigid ones. This is first i noticed any numbness/tingling feelings looking back and that was probably about 1 1/2 years into it. At that time also developed a feel like i've walked all day at the mall achiness. i've since got third pair of orthotics about 2 years ago, which was about 4-5 years into it, they are more leather based and i dont seem to notice sharp pains. I had no treatment the past two years because i had given up. Last month went to an ortho and he said i dont fit typical PF and he didnt think i had it (because my pain is worse the longer i stand etc.). He sent me for bone scan and then felt i had TTS. He said he didnt need further convincing but that if i did, i can have the nerve studies. I had the zapping and the needle test...OUCH. He said that the pattern consistent with TTS. I had a cast for two weeks on one foot to try to rest it and now have a boot walker. He also put me on bextra. He didnt really suggest anything else other than surgery. Should i go to another ortho for a second opinion? or a podiatrist? i've been to couple podiatrists but that's been couple years ago, they originally were ones treating for PF.

Re: long history of pf, new diagnosis of TTS

Dorothy on 6/20/04 at 16:05 (153554)

Lilly -
I am not commenting about your pain and your condition except to say that I am very sorry that you are having all these problems and hope that you get some good help here and elsewhere in your treatment. What I am commenting about is the HMO and medical care that you experienced. I was struck by your saying that you couldn't go to a podiatrist until your regular physician referred you and that took forever because of her maternity leave. That is similar to my experience and I am so sick of it.
My doctor works part-time, is often off on maternity leave or vacation on top of that, and when 'in' is always rushed, impatient and does not listen at all. She is best at 'reciting' as if from memorized textbook, seems to be always zipping through her 'mental PDR' to come up with some prescription and just pushes tests instead of good hands-on, ears and eyes-open, medical care. She dismisses anything that is not the most routine, big-pharma-based, most narrow, mercantile methods. She is almost blatant about her loyalty and affinity for the interests of the HMO-aims over and above the patient. I had a recent follow-up appointment with her before which I tried very hard to prepare and plan so that I might have a more satisfactory outcome. I'm not very organized or assertive in a doctor's office and often don't feel like I've been 'heard' so I was really trying some new ways of communicating to increase my odds of good outcome. I came away with two RX I did not want, a slew of tests that SHE wants and I do not want at all and think are more controversial and risk-related than I want (most people think are routine: mammogram, colonoscopy - I have no symptoms; she has never done any other kind of exam. She never DOES any exam!!) Well, I could go on and on but you have your pain and aggravation. Your comment just touched a nerve and I realized how angry I am about this. You suffer and are in pain while your doctor lives her life the way she wants to - and all of this done in support of the ungodly profits for HMOs, Big-Pharma and security and protection of doctors and their wealth. It is truly an abomination.
Sorry to lay all this on you because of your unrelated post - and I do hope you feel better soon. I hope we all get better medical care!!

Re: long history of pf, new diagnosis of TTS

Marty in SLC on 6/20/04 at 20:10 (153567)

I'm so sorry you have had this trial and we here know how bad it can get. I'm happy that you went to someone else and that they might be on to something. I may be chastised for this as I was last week but it sure sounds to me like TTS and possibly PF as well and I'm just not sure what really works for TTS other then surgery, maybe some here can add some light to what does. Sure sounds allot like what I have been feeling for the past 7 years. I cried to going to the bathroom, now I crawl and that isn't painful.

Can you get a second opinion? I would in the mean time you can research TTS out and start building on a positive foundation mentally.

Best of Luck,

Marty

Re: long history of pf, new diagnosis of TTS

Ed Davis, DPM on 6/22/04 at 20:07 (153723)

Dorothy:

Most docs who are concientious are not happy with this situation. My immediate area lost 4 middle aged family docs to early retirement this year. Unfortunately, they were very dedicated types who just got burned out by the current situation. You have probably heard about the recent supreme court decision insulating HMO's from malpractice. Some of the HMOs are supporting certain family practice residencies where they can 'indoctrinate' young practitioners with their way of doing things. I share your anger and, beleive me, many good docs do so too. I blame the AMA for wasting their energies on inane turf battles while watching the Hippocratic oath get swept away.

Unfortunately, things may have to get worse before they get better.
http://www.gppf.org/article.asp?RT=&p=pub/HealthCare/consumerism_2.htm
I placed this just minutes ago in the ESWT section. The patient must become the consumer as that is the only way to regain control of the system. One of the main reasons I stick around here is that I feel very strongly that patients must do everything possible to educate themselves about their condition. Doctors should be patient advocates and only patient advocates but that is not mandated in any means - either legally, by peer review or otherwise. The attorney-client relationship is well defined but not the physician-patient relationship. It must be defined both legally and ethically. In the interim, patients must become their own advocates as NO ONE ELSE is charged with that responsibility. That means, patients must self-educate and evaluate medical decisions. This site is a good tool to do so as are similar sites dealing with other conditions on the web. We must demand that, via legislation, the physician-patient relationship be restored and that the physician ALWAYS be the patient advocate.
Ed

Re: I appreciate you post

John from MN on 6/23/04 at 09:23 (153749)

Dr. D

I and many people on this board appreciate the fact that you take time out of your day helping people find solutions to their problems. Thanks you.