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Should I question my doctor's approach to my TTS?

Posted by Kerig P. on 3/28/03 at 13:52 (114828)

Hello,
I have been reading this board for several weeks (very helpful), but this is my first time posting here.

My History:
I have recently been diagnosed with TTS by an Orthopedic Surgeon, after dealing with 8 different doctors and an uncountable number of tests and drugs over the last year and a half. Most doctors were concentrating on my spine as the source of the problem, but the Orthopedic Surgeon I'm now seeing did that simple Tinel test, and boom...a diagnosis.

My pain actually started 2 years ago in my left foot, which at the time seemed like I simply needed a new pair of shoes. I now have the pain in both feet, and the pain is constant in my ankles, toes and feet. I had been on Ultram for pain relief for the last year, but was recently taken off of it because (and I did not know this) it's a narcotic. The Ultram used to help reduce the pain somewhat, but over the last 6 months the pain has grown to the point that I can only walk like an old man (I'm 41), and at times with a cane for balance. Walking like this has caused other problems such as leg and back pain, leg and foot cramping, and fatigue.

The Orthopedic Surgeon had me fitted with orthodics, but they only seemed to accentuate my pain even though I gave them a 3 week breaking in period. The Orthopedic Surgeon told me to stop wearing them, and he tried a Cortisone shot in my left ankle. For 2 days I had felt the best that I had felt for quite a while, but eventually the pain returned.

The Orthopedic Surgeon wants to avoid surgery because he has seen only about a 50% success rate in the 10 TTS surgeries that he's performed, and this surgery has a long recovery period. He instead wants to try to eliminate the problems that I'm having by my walking incorrectly. So I am having the orthodics re-adjusted and I will be seeing a physical therapist for 2 weeks. The Orthopedic Surgeon tells me that he wants to try to eliminate the non-TTS problems that I'm having so that the actual TTS can then be worked on.

My Questions:
My concern is that this approach isn't aggressive enough. I feel that I have already wasted 2 years on my life with this problem, and I am no better off, and some days, feeling worse. I had thought of seeking another Orthopedic Surgeon that specializes in TTS for a second opinion. I don't necessarily want to have surgery, but from what I've read here and other places is there any other way to get better? Has anyone gotten over TTS without surgery?

I welcome any input that can be offered to me whether from a professional opinion or from experience. I just want to get better to be able play with my kids again and live a normal life.

Thanks for your time!

-Kerig

Re: Should I question my doctor's approach to my TTS?

Marty on 3/28/03 at 15:25 (114829)

Kerig P I know how you feel, I have suffered for 7 years. I tried many things but nothing helped. Most here will agree with your doctor but I'm 5 weeks post op. I don't know if you have tried rest, neurontin or compression hose?

Re: Should I question my doctor's approach to my TTS?

Lara t on 3/28/03 at 15:38 (114830)

Kevin wrote: I welcome any input that can be offered to me whether from a professional opinion or from experience. I just want to get better to be able play with my kids again and live a normal life.
Marty wrote: I don't know if you have tried rest, neurontin or compression hose?

All good suggestions. I didn't get my old life back, but compression socks did give me a life back that I could enjoy my kids, and husband, and rest of my life (without tennis). They don't work for everyone, but they are magic to some of us. I believe they can be gotten OTC, but the Rx ones are stronger. I get Rx mild and moderate and use as necessary.

Re: Should I question my doctor's approach to my TTS?

Sharon W on 3/28/03 at 16:47 (114838)

Kerig,

I think the subject line of your post answers your own question. You are already questioning whether TTS is the correct diagnosis and whether your doctor is taking the right approach to it. You said that you were diagnosed with TTS by an orthopedic surgeon who is not (?) apparently a specialist in foot and ankle surgery. But you make no mention of having had nerve conduction tests done, or an MRI of your foot. Certainly, it would be good to get a second opinion from an orthopedic surgeon specializing in TTS, or at least in foot and ankle surgery.

The good news is, while there is no one treatment that always works for everyone with TTS. there are many things you can (and should) try before resorting to surgery. What treatments has your doctor started you on so far?

Sharon
.

Re: Should I question my doctor's approach to my TTS?

Kerig P. on 3/28/03 at 17:42 (114840)

Hello everyone,
Thanks so much for the quick replies. This is the most support that I've gotten yet for my TTS!

I have tried Neurontin, but it didn't help at all. I have yet to try compression socks, but when I mentioned this to the doctor, he told me that he wanted me to keep pressure off of the ankle since it was this area where pressure is causing the TTS. But after reading all the comments here about how they have helped so many, I'm game to try them. Heck, I've tried every other footware/footcare product known to man! Is this something that can be purchased online?

I thought that my particular orthopedic surgeon actually specialized in foot and ankle problems, especially since his office also includes a podiatrist that I have seen for fitting me for the orthodics. I have had several nerve conduction tests, the last one concentrating on looking for signs of TTS (an EMG, I believe). I had an MRI of my spine, but not of my feet. Should I ask about this?

The only treatments that my doctor has started me on is the orthodics, cortisone injection, and the physical therapy that I start next week. Maybe I'm jumping the gun and haven't given him much time yet, but I just wanted to see what other people with TTS could offer from their own experiences.

Thanks again for the help, and feel free to add more to this thread if you can offer more!

-Kerig

Re: Should I question my doctor's approach to my TTS?

lauriel on 3/28/03 at 18:12 (114843)

Kerig, you mentioned you had a nerve conduction test and they were looking for TTS. Did the test show positive for TTS? YOur message wasnt clear. I am going on 4 months post op and the recovery is no fun, but I am making progress. You also mentioned are doing therapy for two weeks. Please make sure you see PT that is familiar with TTS as some people have posted worse results. And PT may be ongoing, not just two weeks. My Dr wanted me to continue post-op PT fo another month but I have a $2200.00 cap on my insurance, so I stopped. I have some left in case I really need it again before the year is out. so I would recommend you look into that part too.
Good luck!
Laurie

Re: Should I question my doctor's approach to my TTS?

Ed Davis, DPM on 3/28/03 at 19:12 (114849)

Kerig:
Your orthopedic surgeon is right about the modest success rate for TTS.
There are some modifying factors though. If a space occupying lesion is found in the tarsal tunnel that can be removed, the success rate is higher.
Conservative treatment is certainly worth a try in the absence of such a lesion.

It is important that orthotics do not place pressure on the porta pedis, the area of the arch where the branches of the posterior tibial nerve pass into the foot.
Ed

Re: Should I question my doctor's approach to my TTS?

Sharon W on 3/28/03 at 20:45 (114854)

Kerig,

Orthotics, steroid injections, and physical therapy sounds like a good start. Are you taking any type of anti-inflammatory medications? They do seem to help, sometimes. And sometimes, resting your ankle by keeping it in a cast for a few weeks (at least during the day) can give it time to heal...

I didn't know that your Dr. was a foot and ankle specialist. And I'm glad to hear that you've had the nerve conduction tests.

Even so, I think getting a second opinion is almost always a good thing. If the second doctor examines your foot and comes to a different conclusion, then you'll have something to think about... You may still prefer the first doctor, of course, but that's OK. (Sometimes, seeing another doctor may give you a stronger appreciation for the doctor who diagnosed you in the first place!) I like to pass on the advice, 'listen to your feet' -- sometimes if you pay close attention to what they're telling you, you are able to sense, yourself, which doctor is correct. Or if the second opinion agrees with the first one, well, that helps you to feel more secure that the diagnosis is correct and you're on the right track.

Sharon
.

Re: Should I question my doctor's approach to my TTS?

diana on 3/29/03 at 10:31 (114878)

What did the MRI of your spine show? Diana

Re: Should I question my doctor's approach to my TTS?

Marty on 3/29/03 at 11:53 (114882)

This is great advice! I went through 2 pair of orthodics with this problem.

Re: Should I question my doctor's approach to my TTS?

Marty on 3/29/03 at 11:57 (114883)

Just be real carful with the compression socks. They only work for a few. Have you tried a boot to use only during the day? Some even leave it on at night.

Re: compression socks & boots

Lara t on 3/29/03 at 14:12 (114892)

Marty wrote: Just be real carful with the compression socks. They only work for a few. Have you tried a boot to use only during the day? Some even leave it on at night.

Re: compression socks, my understanding (from my podiatrist & other consultations) is that they work for a lot of people - but apparently not for a lot of people on these boards - most people on these boards are tough cases however - and yet there are several of us that do wear them. Also, I've not heard of any damage being done from trying them, although some people find them somewhere between not helpful and painful. However, in that case they take the socks off and any pain is reversed relatively quickly. I've not heard stories to the contrary anyway although since I consider them a success, I didn't have to live through this.

I wouldn't want you to think you have found 'cure' in them, but they are relatively easy to try, easy to stop if they don't work, and relatively inexpensive as a treatment. I'm one of those people for whom they work magic (didn't give me back the active life I had, but probably brought from fantasizing about amputation, to a very nice life that I can do most of what I want (but not tennis) - I'd give it 85% improvement in my life. 100% would be nice, but I'll take 85% and consider myself lucky.

That boot thing sounds interesting too. CAn you tell me more about it Marty?

Re: Should I question my doctor's approach to my TTS?

Ed Davis, DPM on 3/29/03 at 14:37 (114897)

Marty:
Thank you. I would like to get on top of a soap box and yell for better standards in the prescription and fabrication of orthotics. There is an art and a science in this area although I have heard and seen too many patients with substandard devices in which the 'basics' have not been adhered to.
Ed

Re: Should I question my doctor's approach to my TTS?

Kerig P. on 3/29/03 at 18:00 (114908)

Diana, the MRI of my spine showed minor inflamation, which didn't stop the doctor of the hour from giving me an epidural that did nothin for me.

Re: compression socks & boots

Kerig P. on 3/29/03 at 18:05 (114910)

I haven't tried either, but will look into both soon. Lara, I can empathize with your statement about amputation, it's exactly how I feel at times!

-Kerig

Re: Should I question my doctor's approach to my TTS?

Kerig P. on 3/29/03 at 18:12 (114911)

I was originally fitted with a pair of orthodics by a chiropractor, which were immediately dismissed as useless by the podiatrist who said 'Chiropractors don't know how to fit for orthodics.'. The Chiropractor had me stand in a box of porous foam, which took the shape of my feet to make the orthodic. The podiatrist casted my feet. Which method is better? Are the Chiropractor's orthodics useless?

-Kerig

Re: Should I question my doctor's approach to my TTS?

Ed Davis, DPM on 3/30/03 at 13:03 (114926)

Kerig:
A weight bearing impression captures the position of the foot in an uncorrected fashion. That can be appropriate at times but generally a non-weight bearing cast where the doctor places the foot in a partially corrected position before capturing it, provides superior results.

Many chiropractors utilize foot orthotics primarily to help them treat postural symptomatology as opposed to treating foot problems.

I feel that a good practitioner always places the patient first and is willing to utilize the services of other disciplines who have more expertise in a given area. I refer patients to chiropractors who have postural symptomatology due to foot, gait and limb length problems and recieve chropractic referrals for patients with foot problems. There is a subset of practitioners in all professions who feel that they can 'do it all' and provide almost all the services a patient needs.

Since the arch height drops lower in weight bearing, an orthotic casted in the weight bearing position is less likely to irritate the porta pedis, givng your first set one advantage. The other characteristics of that set may have less of an advantage so without actually seeing the two pairs, I cannot comment accurately.
Ed

Re: To suffer needlessly, is barbaric !

BrianG on 3/30/03 at 22:12 (114956)

Hi Kerig,

In your original post, you mentioned that you were taking Ultram, but stopped when you found out it was a narcotic. Since then you have been in crippeling pain, walking like an old man.

Why? Why would you stop taking a pain med that was helping you? Just in case you don't know, it's fairly easy to taper off the pain meds, once you are healed. I don't know whose idea it was to deny you one of the things that will most likely work, at relieving your pain. If fact, there are other pain meds that may even work better for your type of pain. You'd be surprised at how many patients now take pain meds to help them them cope with every day activities. If your doctor is the one that cut you off, there are others that can help you. Go to a search engine and type in 'pain management clinics', or 'pain specialists'. Help is out there, don't be afraid to use it !!!

Good luck
BrianG

Re: To suffer needlessly, is barbaric !

Ed Davis, DPM on 3/31/03 at 14:13 (115018)

BrianG:
I did not read the original post. I, too, would not worry unnecessarily about Ultram and would take it if it helps. It is not 'officially' classified as a narcotic although it has some 'narcotic-like' action and there have been a few cases of 'addiction.' I am unsure if those cases were actually 'habituation' as opposed to addiction. 'Addiction' is defined as a physical need and 'habituation' a psychologic need.

There is no perfectly safe drug but would consider the safety profile of Ultram to be very good.
Ed

Re: Should I question my doctor's approach to my TTS?

Carol V on 3/31/03 at 15:50 (115038)

I have been diagnosed with tarsel tunnel in my left ankle with pain in the ankle and up my leg. Nerve conduction tests, MRI and xray have confirmed the diagnosis. I am 57 years of age and have other medical problems. Surgery has been the only course of treatment suggested to me. Trying to find the best orthopedic surgeon I can find in the area that is on my insurance is where I am right now. For the past 20 years I have also suffered from a mixed connective tissue disorder, scleraderma, lung and liver problems as well as periferary neuropathy. I have extremely flat feet and wear orthodonics prescribed by my podiatrist. What do you think?

Re: To suffer needlessly, is barbaric !

Kerig P. on 3/31/03 at 16:02 (115039)

Thank you for the comments. After a year of taking the Ultram it seemed as if it wasn't working as it used to work, which is why the doctor took me off of it. Unfortunately I am now in more pain than I've ever been. I will have to mention this to the doctor on my next visit.

-Kerig

Re: To suffer needlessly, is barbaric !

Ed Davis, DPM on 3/31/03 at 18:01 (115049)

Kerig:
Medication's effects decreasing over time is not uncommon. If you have been off Ultram for a while, it may have a better effect when restarted.
One can take up to eight 50 mg. Ultram tablets per day if no drug interactions exist. Combining Ultram with membrane stabilizing drugs such as Neurontin often provides a synergistic effect under the right circumstances.
Ed

Re: To suffer needlessly, is barbaric !

BrianG on 3/31/03 at 20:30 (115068)

Dr. Ed is correct. Unfortunatly our bodies will develop a tolerance to all pain meds, it's the nature of the beast. Some people can go a year without an increase, some more, and some less. It's perfectly normal for your body to become accomodated to a starting dose. If you'd like to read a little more about pain meds, this web site is a good place to start: http://www.pain.com

Good luck in getting that pain under control
BrianG