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Now what do I do??

Posted by Marty on 2/10/03 at 15:42 (108713)

Now what?

I so confused! I have been to 3 podiatrists, 2 neurologist, and the one neurologist wouldn't even see me, said he wouldn't see another neurologists patient and 1 orthopedic foot and ankle surgeon.

Last month I had a nerve conduction test done and I was told by the neurologist that I have more then tarsal tunnel syndrome and that I should come back to see him. So I made an appointment went back to see him today and all he did was tell me that after talking to me pod he feels I should have tarsal tunnel release done. How can he say this? He didn't do anything to me.

I have been dx with:

Planter Fasciitis by 3 podiatrists.
Neuropathy by an md and an orthopedic surgeon, not the neurologist now!
Tarsal tunnel syndrome by one podiatrist and neurologist.

Marty

Re: Now what do I do??

SteveG on 2/10/03 at 16:57 (108721)

I have not followed your other posts. What other tests have you had done - ultrasound, MRI, complete blood work? You need a clearer diagnosis before you even begin to contemplate surgery.

Re: Now what do I do??

Marty on 2/10/03 at 18:47 (108736)

No MRI
No Ultasound
Yes Blood work
Yes NCV

Thanks Steve I guess I'm just going to have to insist on them. Neither the Pod nor the Neuro wants to do them. I so tierd of this crap! I have been to a doctor every week since the first week of jan. And it looks like I'm going to another next week and it's a new pod wouldn't you know it. My old ond has moved and maybe that's a good thing.

Marty

Re: Now what do I do??

Lara T on 2/10/03 at 18:48 (108737)

I'm not sure I agree completely with Steve. My understanding is the NCV test is the gold standard for TTS - at least a positive test is, which I presume it was given the neurologist's response. If you are going to have surgery, I certainly agree with Steve - there are more tests to be done. But I would try other less invasive options before trying surgery.

Re: less invasive options?

Marty on 2/10/03 at 22:08 (108761)

Yes my NVC came back positive. But first the neuro told me it was neuropathy and now I guess he's changed his mind after talking with my long gone pod. He moved so now I have a new one.

What do you mean by less invasive options?

I've had 2 set of orthodics
Shots
Blood work
X-rays was first dx with pf
NCV- positive along with some neuropathy

Marty

Re: less invasive options?

Lara T on 2/11/03 at 00:05 (108767)

If the neurologist isn't familiar with TTS, I wouldn't be surprised if results suggesting TTS are considered neuropathy. Neuropathy means 'disease (pathy) of the nerves (neuro). TTS however is just one nerve (I think) in the TT, rather than what is usually referred to when speaking of peripheral neuropathy, but I believe it is technically a type of neuropathy.

Other treatments, short of surgery, people have tried (and every thing listed has helped someone, and not helped someone else)

-compression socks (worked miracles for me)

- taping (see Scotts heelbook, online) -helped me alot when done for diagnostic purposes (it was heavier taping that Scott's book describes), but very impratical on a chronic basis.

-nightsplints or strassburg sock

-ice (daily and/or after activities. You can get ice packs that fit -nicely to the foot). I've heard reports of this being much more successful than would be anticipated, even 15 min/day at the end of the day

-recently I've had some help (I think) from PT - although be careful, the PT has to be familiar with nerve issues & foot structure. as some people have reported things being made worse.

Re: less invasive options?

Marty on 2/11/03 at 02:49 (108774)

Lara,
I've done all these other then the compression socks religiously for years. There's no way I can ware even normal socks due to the burning let along compression socks.

I'm just confused why the neurologist would come into the room after my NCV last month and tell I need to come back because I have peripheral neuropathy and then a month later, (that's how long it took me to get back in to see him) tell me I need to see my pod for TTS release. Why? Why scare the crap out of me by telling me last month one thing, leave me hanging for a month in pain and then tell this month I need TTS release. Just doesn't make since. What did the pod tell him to make him change his mind? I guess I'm going to have to ask the pod this question.

Marty

Re: less invasive options?

eileenc on 2/11/03 at 08:37 (108785)

When the burning pain was so bad that the weight of a sheet would cause pain I slept with a big blue ice pack on my ankle every night for 3 1/2 years. What else helped:
1) Neurontin --I take 2200mg
2) Putting my foot every night before bed into a 20 minute bath of ice cubes and water. It takes your breath away at first!
3) Whatever it takes to get a good night's sleep. when I don't, the pain is worse
Good Luck.I was first dagnosed with this over 6 years ago.

Re: less invasive options?

Lara T on 2/11/03 at 09:46 (108793)

QUESTIONS: 'Why scare the crap out of me by telling me last month one thing, leave me hanging for a month in pain and then tell this month I need TTS release.'

Perhaps lack of knowledge (not necessarily incompetent, all doctors don't know all diseases) + poor bedside manner.

I have a friend who was in graduate school for biology and did research at a school with a med school (this is to say she was much more knowledgeable than your average patient). She was having headaches and a few other odd things happen. She got several referrals. I can't remember which doctor it was that speculated in her presence maybe it was MS. She was sent back home - very disturbed. Turns out she had migraines. Not pleasant, but not MS, and probably will go away as her body ages (actually, this was about 15 years ago when we were having babies. Now that we're entering menopause all kinds of things are very different - including not having heard about migraines for quite awhile).

So there may be not much beyond this in the neurologist's behavior. He wants to 'know' (that's a good thing in doctors - unless they feel compelled to know when they don't), but he isn't familiar with TTS so he attaches the meaning that's closest to what he does know - and did so before researching it. AFter he got more information, the test results made sense and he changed his mind.

Asking the pod sounds like a good plan.

Re: MR Neurography

Terry on 2/11/03 at 09:56 (108794)

I have done research on this enhanced MRI and have contacted the Nerve Institute in California.They indicated MR neurography can see the postier tibial nerve and where or if it is compressed. MR neurography can see the nerves because of its enhanced software. There are very few neurologists that can read this type of MRI therefore there a very few places where this is performed. UCLA does, Dr. Aaron Filler in Ca,, the nerve institute in CA. and I found a clinic in New Jersey that can perform this test.
I have made an appoinment with Dr. Filler for March 17th.He is the leader in this field. First consult is $500 which insurance doesn't cover but my insurance will pay for the MR Neuoraphy as it is not experimental. A flight from Ohare is only $161-180 non stop.
All this is worth it if they can tell you with certainty if the nerve is compressed and where.
Mayo does not do this.In fact I talked with a friend of mine last night who had a numb foot went to our local pod who did tts surgery and the result was it left him with extreme pain in his sole. Something he did not have prior to surgery.
He then went to Mayo where they sent him home, Told him they don't even do tts anymore and to just rest it. He, after 6 months, is now starting to recover nicely. Pain is gone and he is able to walk ok.
You can find all the info you want on MR neurography by just typing that in search of your browser.
Terry

Re: less invasive options?

Marty on 2/11/03 at 14:26 (108821)

eileenc,

Have you had tts release?

I know what you mean about sleep. I've been up since 1:30 am.

Marty

Re: less invasive options?

Marty on 2/11/03 at 14:39 (108823)

Lara,

GOOD POINT! I think your right.

I wonder this when I had the NCV so I asked the assistant doing the test how many of these she does. She said allot mostly carpel tunnel thought, said she had done 2 that day. This eased my mind at that point but maybe he was not sure on the first look at test. I called the senior pod and asked him about neuro and he said he's absolutely the best!

I will find out more today, I'm off to see my new pod.

Marty

Re: MR Neurography

Carol D. on 2/12/03 at 16:44 (108943)

I appreciate the information that you have provided on MR Neurography. All EMG and NCV tests have been negative, but I have struggled with serious nerve pain in my foot for almost a year. Current dx is either 'probable entrapment of lateral plantar Nerve' or 'bruised nerve that will respond to rest'. I am going to pursue obtaining MRN and would appreciate hearing about your experience.

Good luck. Carol D

Re: Now what do I do??

SteveG on 2/10/03 at 16:57 (108721)

I have not followed your other posts. What other tests have you had done - ultrasound, MRI, complete blood work? You need a clearer diagnosis before you even begin to contemplate surgery.

Re: Now what do I do??

Marty on 2/10/03 at 18:47 (108736)

No MRI
No Ultasound
Yes Blood work
Yes NCV

Thanks Steve I guess I'm just going to have to insist on them. Neither the Pod nor the Neuro wants to do them. I so tierd of this crap! I have been to a doctor every week since the first week of jan. And it looks like I'm going to another next week and it's a new pod wouldn't you know it. My old ond has moved and maybe that's a good thing.

Marty

Re: Now what do I do??

Lara T on 2/10/03 at 18:48 (108737)

I'm not sure I agree completely with Steve. My understanding is the NCV test is the gold standard for TTS - at least a positive test is, which I presume it was given the neurologist's response. If you are going to have surgery, I certainly agree with Steve - there are more tests to be done. But I would try other less invasive options before trying surgery.

Re: less invasive options?

Marty on 2/10/03 at 22:08 (108761)

Yes my NVC came back positive. But first the neuro told me it was neuropathy and now I guess he's changed his mind after talking with my long gone pod. He moved so now I have a new one.

What do you mean by less invasive options?

I've had 2 set of orthodics
Shots
Blood work
X-rays was first dx with pf
NCV- positive along with some neuropathy

Marty

Re: less invasive options?

Lara T on 2/11/03 at 00:05 (108767)

If the neurologist isn't familiar with TTS, I wouldn't be surprised if results suggesting TTS are considered neuropathy. Neuropathy means 'disease (pathy) of the nerves (neuro). TTS however is just one nerve (I think) in the TT, rather than what is usually referred to when speaking of peripheral neuropathy, but I believe it is technically a type of neuropathy.

Other treatments, short of surgery, people have tried (and every thing listed has helped someone, and not helped someone else)

-compression socks (worked miracles for me)

- taping (see Scotts heelbook, online) -helped me alot when done for diagnostic purposes (it was heavier taping that Scott's book describes), but very impratical on a chronic basis.

-nightsplints or strassburg sock

-ice (daily and/or after activities. You can get ice packs that fit -nicely to the foot). I've heard reports of this being much more successful than would be anticipated, even 15 min/day at the end of the day

-recently I've had some help (I think) from PT - although be careful, the PT has to be familiar with nerve issues & foot structure. as some people have reported things being made worse.

Re: less invasive options?

Marty on 2/11/03 at 02:49 (108774)

Lara,
I've done all these other then the compression socks religiously for years. There's no way I can ware even normal socks due to the burning let along compression socks.

I'm just confused why the neurologist would come into the room after my NCV last month and tell I need to come back because I have peripheral neuropathy and then a month later, (that's how long it took me to get back in to see him) tell me I need to see my pod for TTS release. Why? Why scare the crap out of me by telling me last month one thing, leave me hanging for a month in pain and then tell this month I need TTS release. Just doesn't make since. What did the pod tell him to make him change his mind? I guess I'm going to have to ask the pod this question.

Marty

Re: less invasive options?

eileenc on 2/11/03 at 08:37 (108785)

When the burning pain was so bad that the weight of a sheet would cause pain I slept with a big blue ice pack on my ankle every night for 3 1/2 years. What else helped:
1) Neurontin --I take 2200mg
2) Putting my foot every night before bed into a 20 minute bath of ice cubes and water. It takes your breath away at first!
3) Whatever it takes to get a good night's sleep. when I don't, the pain is worse
Good Luck.I was first dagnosed with this over 6 years ago.

Re: less invasive options?

Lara T on 2/11/03 at 09:46 (108793)

QUESTIONS: 'Why scare the crap out of me by telling me last month one thing, leave me hanging for a month in pain and then tell this month I need TTS release.'

Perhaps lack of knowledge (not necessarily incompetent, all doctors don't know all diseases) + poor bedside manner.

I have a friend who was in graduate school for biology and did research at a school with a med school (this is to say she was much more knowledgeable than your average patient). She was having headaches and a few other odd things happen. She got several referrals. I can't remember which doctor it was that speculated in her presence maybe it was MS. She was sent back home - very disturbed. Turns out she had migraines. Not pleasant, but not MS, and probably will go away as her body ages (actually, this was about 15 years ago when we were having babies. Now that we're entering menopause all kinds of things are very different - including not having heard about migraines for quite awhile).

So there may be not much beyond this in the neurologist's behavior. He wants to 'know' (that's a good thing in doctors - unless they feel compelled to know when they don't), but he isn't familiar with TTS so he attaches the meaning that's closest to what he does know - and did so before researching it. AFter he got more information, the test results made sense and he changed his mind.

Asking the pod sounds like a good plan.

Re: MR Neurography

Terry on 2/11/03 at 09:56 (108794)

I have done research on this enhanced MRI and have contacted the Nerve Institute in California.They indicated MR neurography can see the postier tibial nerve and where or if it is compressed. MR neurography can see the nerves because of its enhanced software. There are very few neurologists that can read this type of MRI therefore there a very few places where this is performed. UCLA does, Dr. Aaron Filler in Ca,, the nerve institute in CA. and I found a clinic in New Jersey that can perform this test.
I have made an appoinment with Dr. Filler for March 17th.He is the leader in this field. First consult is $500 which insurance doesn't cover but my insurance will pay for the MR Neuoraphy as it is not experimental. A flight from Ohare is only $161-180 non stop.
All this is worth it if they can tell you with certainty if the nerve is compressed and where.
Mayo does not do this.In fact I talked with a friend of mine last night who had a numb foot went to our local pod who did tts surgery and the result was it left him with extreme pain in his sole. Something he did not have prior to surgery.
He then went to Mayo where they sent him home, Told him they don't even do tts anymore and to just rest it. He, after 6 months, is now starting to recover nicely. Pain is gone and he is able to walk ok.
You can find all the info you want on MR neurography by just typing that in search of your browser.
Terry

Re: less invasive options?

Marty on 2/11/03 at 14:26 (108821)

eileenc,

Have you had tts release?

I know what you mean about sleep. I've been up since 1:30 am.

Marty

Re: less invasive options?

Marty on 2/11/03 at 14:39 (108823)

Lara,

GOOD POINT! I think your right.

I wonder this when I had the NCV so I asked the assistant doing the test how many of these she does. She said allot mostly carpel tunnel thought, said she had done 2 that day. This eased my mind at that point but maybe he was not sure on the first look at test. I called the senior pod and asked him about neuro and he said he's absolutely the best!

I will find out more today, I'm off to see my new pod.

Marty

Re: MR Neurography

Carol D. on 2/12/03 at 16:44 (108943)

I appreciate the information that you have provided on MR Neurography. All EMG and NCV tests have been negative, but I have struggled with serious nerve pain in my foot for almost a year. Current dx is either 'probable entrapment of lateral plantar Nerve' or 'bruised nerve that will respond to rest'. I am going to pursue obtaining MRN and would appreciate hearing about your experience.

Good luck. Carol D