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My Treatment History - Have I missed anything?

Posted by Ron B on 1/18/02 at 15:12 (070420)

As promised here is my treatment history. Have I missed anything? Even though I am desperate at this point to find relief, I will try to keep this light as I am a true believer that laughter is the best medicine. Check out items 7, 10 & 12 in my treatment section. I have read back a year on the site and have seen no reference to these types of treatment. Where I could, I have added some suggestions for current & future sufferers of this rare and painful condition we call TTS!

Personal:
39 year old male from northern Indiana (and yes there is more than corn in Indiana, there is also soybean and wheat).

Problem:
I began to notice numbness & tingling in my right foot in December of 2000 that would not go away. I had some pain in both feet. Thinking exercise a cure all, I increased my daily walking and even added tow to heal exercises. Mistake!!!

Diagnosis:
It took about three months and two doctors before they were convinced that I had a problem. After being poked, tapped & prodded I was given the following tests & referrals:

1) Glucose Tolerance Test (Diabetic blood test). Results Negative.
2) Blood test for HNPP (some type of genetic test). Results Negative.
3) Referred to a Neurologist.
4) EMG & NCS (Nerve Conduction Study). Here is where I differ with many of you on the level of pain with these tests (or perhaps it was the way they were administered). Pain that was minor was now major and I could not walk for about three days afterwards. 400 mg of Ibuprofen helped but here is my advice on these tests. If they hurt tell the doctor. Now is not the time to be a he-man (person for the ladies) and take it. I have not been the same since!
5) MRI on both ankles, done by an MD. Swelling was visible. Info was sent to my Dr, pod & neurologist.
6) Diagnosed by my Neurologist with BI-Lateral Tarsal Tunnel Syndrome. IT TOOK SIX MONTHS TO GET HERE!
7) Referred to a local Podiatrist. I had heard from several that he was good.

Treatment:
Both of my ankles were X-Rayed at this time. My podiatrist after examining my feet, the wear on my shoes and the MRI concluded that FLAT FEET were the cause of my TTS (and I do have very flat feet)! My advice here is to wear or bring along well-worn shoes to the pod. They can tell a lot just from the wear on your shoes (don't judge a shoe by its cover does not apply here).
1) Vasoconstriction (ice soaks) 1-2x a day. This is and remains one of the few things that brings me relief from the pain. I continue to do this to date.
2) Referred to a nearby specialty shoe store for good supporting shoes. My suggestion here is 'BEWARE THE SMALL STORE SHOE SALESMAN'! I came away with two pairs of shoes (one tennis and one dress) for $530!!! (this was high-pressure take advantage of the foot problem tactics). To date I can only wear one of them, my New Balance tennis shoes (I am happy with these shoes when I can wear them). In the future I will take full advantage of web sites to insure a fair price. My condolences to those of you who have purchased Birkenstock (the fashion police will be coming).
3) Custom Orthotics. A pair was made from foam and after two adjustments I now wear these at all times. This was not covered by insurance, but I highly recommend that this is used especially for flat feet.
4) Air Cast (Cam Walker). I first received an Air Cast for my right foot along with crutches. This did provide some relief, however, the additional stress on my left foot now increased the pain level to the same as the right.
5) Air Cast for the left foot. This was much easier to walk with both casts, however it took several days to get used to. I traded my crutches for a cane. I am now at NINE MONTHS since the onset!
6) Two weeks Medical Leave from work with Physical Therapy. This included ultrasound and ice therapy 3x a week for 2 weeks. Although after the 5th visit I saw improvement, it was recommended by my pod that I gradually go back to the tennis shoes with orthotics. TOO SOON!!! My advice here is that if you see improvement don't rush to get back to normal activities. After spending the weekend in shoes all of the pain returned. This was definitely a missed opportunity for me.
7) Lontophoresis anti-inflammatory treatment. This was also done as part of my physical therapy. I saw improvement after the fifth visit. This uses a plus and minus electrode on either side of the ankle to draw the medicine through the skin into the inflamed area. There is only minor discomfort. This is an option to cortisone shots, of which I have read are painful and do not have a high success rate.
8) Medications that have not worked for me: Vioxx, Neurotin, and Prednisone. Pain: Mobic & Ultram. Creams: many. My suggestions here is to try several until you find one that works for you.
9) Medications that have worked for me: Celebrex (This took 4 months for my insurance to approve. It was not on their formulary). Pain: two Vicodin. Cream: Maximum strength Flexall. At this point they only take the edge off.
10) Magnetic therapy. I purchased 2 magnetic wraps from Homemedics. Although I was skeptical on using these, this is one of the few things that has brought me relief from the pain at night. There are 15 one-inch magnets in a Velcro wrap. I works for me and I continue to use this to date.
11) Medical Leave and a Wheel Chair. I have been on medical leave now since the first of December. I have returned in the wheel chair for about a day and a half but the pain was too great (even though for the most part I have a desk/computer job). I am seeing no improvement with bed rest.
12) Referred to a MD & AAPM (anesthesia and pain management). I have now received two injections a week apart in both ankles. My pod said that this has worked on some problem cases. The injections have both an anesthetic and the anti-inflammatory medication called Aristocort. The numbness of the anesthesia lasts about 8 hours and the anti-inflammatory for about three days. For me the pain returned immediately after the anesthesia wore off.
13) Referred to a local pod / surgeon for a second opinion and discussing the option of surgery. I will be seeing him this coming Monday.

Options???
From reading the Web site it looks like there are three things I have not tried.
1) B12 test and injections. Any success stories?
2) Acupuncture. My Pain management Dr. is very ademate about trying this. However, this will not be covered by insurance and at $150 a treatment and a minimum of 4 treatments, well you the picture.
3) Surgery. I have read the good, the bad and the ugly. The real problem seems to be that this is so different for each individual and there are no guarantees.

Have I missed anything?
Is there anything that I have missed?
I will appreciate all of your opinions and responses.
Please let me know what you think.

Ron

Re: My Treatment History - Have I missed anything?

wendyn on 1/18/02 at 22:10 (070463)

Ron - I have been helped by B12. It is safe - and no risk to you...have your levels tested and then try supplementation (preferably by injection) you have NOTHING to lose (even if your levels are fine). From what I've read B12 is very safe.

I have also had a lot of relief from acupuncture but $150 per sounds very high. I live in Canada and my treatments that were part of physio were 70 per. Call around to some of your better sports med physio clinics - they probably have someone who does combination Tradition/Medical acupuncture. Again - almost no risk to you - you have NOTHING to lose. The risks from acupuncture (as long as provided by someone certified and reputable) are practically non-existant.

Surgery - again, the last resort. If your problem is indeed flat feet....

That's what my problem is - and according to my surgeon - a release could actually make me worse. In my case they believe the pain is mostly coming from a stretch on the nerve - a release would allow it to stretch even more.

Surgery is the one decision you can't go back on...so unless there's a mass in the tunnel...I would tread with caution.

Sounds to me like you still have a couple of viable solutions to go through first....and I can sympathize with the pain. For me - the B12 and acupuncture did wonders for the pain and burning, and even the numbness.

Please give it a try.

Re: My Treatment History - Have I missed anything?

Janet C. on 1/19/02 at 03:22 (070471)

Hi Ron,

I agree with Wendy - surgery should be the VERY LAST resort. So often, the resulting pain is MUCH WORSE than the original injury! (Hard to believe, but true.) I understand that you are desperate for relief, but there are still many conservative treatments you should try...

For instance, one of my Drs. is a big proponent in the healing power of natural herbs and vitamins. These are some that he has recommended, and always encourages me to take:

Bromelain - is made up of proteolytic enzymes, from pineapples. It is used to aid in soft tissue healing, it accelerates the inflammatory healing response, and is helpful to relieve chronic pain associated with sports injuries and degenerative joint diseases.

Glucosamine with Chondroitin Sulfate - Glucosamine and Chondroitin are both naturally occurring substances in the body. It stimulates the formation and repair of articular cartilage, and prevents other body enzymes from degrading the building blocks of joint cartilage. It is also an anti-inflammatory.

Niacinimide - is a gentler form of Niacin, and helps to open up the blood flow. It can reduce swollen joints, morning stiffness, discomfort, inflammation and pain and has been shown to increase joint mobility.

DLPA - (DL Phenylalaline) helps to regulate pain and control the transmission of pain signals. This needs to be taken for at least 6 - 8 wks, before you'll notice any difference. After it builds up in your bloodstream, then it can be taken every other day, or a few times a week. It is also beneficial to take with L-Tyrosine.

SAMe - leads to a reduction in pain, improvement in function, decrease in morning stiffness, and improved mobility.

Boswellia - Boswellic acid extracts have demonstrated the ability to inhibit inflammatory mediators, prevent a decrease of cartilage synthesis and improve blood supply to the joint tissues.

Capsicum - this can affect the nerve fibers that transmit pain messages.

Curcumin - a pigment found in turmeric, it has potent anti-inflammatory and antioxidant effects. It has also been able to produce improvements in morning stiffness, walking time and joint swelling.

Ginger - This can give substantial improvement in pain, joint mobility, swelling and morning stiffness. It has an antioxidant effect, and has an ability to inhibit the formation of inflammatory compounds, as well as a direct anti-inflammatory effect.

There are also supplements of essential fatty acid oils - these good fats include borage, evening primrose, black currant, and fish oils.

And then there are also important factors such as taping, stretching, and elevation.

Have you tried any of these?

You also stated that you have not seen your treatments # 7, 10, and 12 discussed on this board. But I believe you may have mis-spelled, 'Lontophoresis'. I may not be spelling it correctly, but I think it's 'Iontophoresis'. I have also had the treatments, and found it to be quite painful, but others have gotten very good results from it, and I know it has been mentioned here.

I hope that some of these suggestions are helpful to you!

Best wishes, Janet

Re: My Treatment History - Have I missed anything?

Carmen H on 1/19/02 at 12:57 (070524)

I don't see anything about stretching mentioned in your post...or maybe I missed it? Very possible with my schedule lately.
I also was wondering if you have tried any B vitamins? while the ones that are described above are all valid and great suggestions the B vitamin groups are great for nerve problems. The Chrondoitin and Gluco and Sam E are mainly for joint mobility and keeping them 'lubed' so to speak. ;-)
Also Vitamin C is a great anti inflammatory as well. HIGH doses won't hurt you as it is released in the urine throughout the day.
I know that you may be expecting 'medical answers and suggestions' but I have found in my own experience that these have not helped me as much as alternative remedies and supplements have.
Other thoughts for pain management? Biofeedback (Laurie R knows about this) may be an option at this stage...at least for control of the pain. Stress makes it worse as we all know by now.
How many opinions have you gotten about your case?
I guess if I were taking another step 'conservatively' I would start researching the Mayo clinic for some help. But that's me....I would take it as far as I could until I got some answers.
Also Alan K has posted about Prolotherapy...I know VERY little about this so I won't comment but maybe it's something you can look into.
Iontophoresis wasn't at all painful for me it may have been worse b/c of your pain level....it shouldn't have hurt that badly though.
I hope you get some asnwers and we'll keep you in thought.

Re: Biofeedback

Janet C. on 1/19/02 at 19:48 (070577)

I have been going to Biofeedback for about a year and a half now. It is a training technique in which the patient is taught how to relax their breathing, heart rate, blood pressure, muscle tensions, and other bodily functions that are not normally controlled voluntarily.

The patient is hooked up to an EMG machine, which makes a beeping sound. By taking slow, deep breaths and relaxing, one can slow down, and lower the octave of the beeping. And when the muscles are no longer as tense, the pain levels will decrease. It is not a cure, but it has made a substantial difference in my quality of life. After the technique is taught, one can repeat the results at will, without being attached to the machine's sensors.

Biofeedback is scientifically based, and its results have been validated by studies and clinical practice. It can train individuals with techniques for living a healthier life, whether one is afflicted with a medical condition, or not. I highly recommend it.

As for the Iontophoresis, I was only put through that torture for six weeks during PT. For me, it stung and was irritating, but was 'tolerable', as they put it. You may be right, Carmen, it may have hurt worse because of my pain levels, and overly sensitive feet with RSD.

Wishing you all the best ~ Janet

Re: Biofeedback

Laurie R on 1/19/02 at 22:52 (070601)

I agree with my friend Janet all the way with Biofeedback. I have not been doing it for to long , but I think it has helped me more then anything at this point... It is so wonderful to be able to do it yourself at home to lower my pain and anxiety .... It works ......

My best to all, Laurie R

Re: questions

elliott on 1/19/02 at 23:15 (070603)

1. Can you explain your exact symptoms--type, location, severity, etc.?

2. What exactly did the MRI (swelling--of what?) and NCS (negative? positive? numbers?) show?

3. Did you follow up with the nerve conduction guy and ask him about the test making you worse?

---

Re: My Treatment History - Have I missed anything?

Ed Davis, DPM on 1/21/02 at 15:31 (070787)

Sounds like you have covered most of the bases. One set of lab tests that may be considered are thyroid function tests. Hypothyroidism increases the possibility for entrapment neuropathies. Fairly common in middle aged females, less in men.
Ed

Re: Additional Questions?

Ron B on 1/24/02 at 11:42 (071128)

Thanks for the reply! I have additional questions on the B12 & acupuncture.
How much B12 can I safely use (or is recommended)?
How many session of acupuncture did you require before you noticed improvement?
How much did each session cost?
Thank you, Ron

Re: questions

Ron B on 1/26/02 at 13:11 (071415)

Elliot,
This was the report from the Nerve conduction study (as written by the neurologist) of my left and right peroneal and posterior tibial nerves.
Impression: This is an abnormal EMG/NCV. This shows an almost textbook classical pattern for tarsal tunnel syndrome with very significant prolongation in the tibial distribution with deviation in the distal distribution of that nerve. The distal motor evoked responses of the planter nerves were significantly prolonged, especially in the medial plantar distribution. Platencies in the tibial nerve distributions were significantly prolonged. They were at the upper limit to slightly prolonged in the peroneal distributions.
After being referred to a podiatrist, I cancelled my 3-month follow up visit with the neurologist (once in the torture chamber was enough).

Re: My Treatment History - Have I missed anything?

Ron B on 1/26/02 at 13:43 (071418)

Thank you for the info! The B12 I do get is included in my daily multivitamin. I just received a second opinion and there is indeed a mass in my tunnel, a 4th tendon!!! It is called FDAL and I will write in more detail on this in a separate post!

Re: My Treatment History - Have I missed anything?

GaryZ on 1/30/02 at 22:36 (072027)

I had a similiar history (I am 45) and work up revealed a primary neuropathy.

You need a sweat test and autonomic test to rule out a small fiber neuropathy.

Read the disease called P.A.I.N at :

http://www.dcmsonline.org/jax-medicine/august2000/neuropathies.htm

Gary

Re: My Treatment History - Have I missed anything?

Jim F on 5/20/02 at 22:57 (084743)

Dr.,I've been hypo for 20 yrs .Thelast three years have had excrutiating pain in both feet with positive emgs for neuropathy.I recently went to an endo who said my tsh was off and i was being under treated with synthroid.He said it could take 6 months to feel better.Now my question is ,should i wait ,or is the entrapment irreversible?

Re: My Treatment History - Have I missed anything?

wendyn on 1/18/02 at 22:10 (070463)

Ron - I have been helped by B12. It is safe - and no risk to you...have your levels tested and then try supplementation (preferably by injection) you have NOTHING to lose (even if your levels are fine). From what I've read B12 is very safe.

I have also had a lot of relief from acupuncture but $150 per sounds very high. I live in Canada and my treatments that were part of physio were 70 per. Call around to some of your better sports med physio clinics - they probably have someone who does combination Tradition/Medical acupuncture. Again - almost no risk to you - you have NOTHING to lose. The risks from acupuncture (as long as provided by someone certified and reputable) are practically non-existant.

Surgery - again, the last resort. If your problem is indeed flat feet....

That's what my problem is - and according to my surgeon - a release could actually make me worse. In my case they believe the pain is mostly coming from a stretch on the nerve - a release would allow it to stretch even more.

Surgery is the one decision you can't go back on...so unless there's a mass in the tunnel...I would tread with caution.

Sounds to me like you still have a couple of viable solutions to go through first....and I can sympathize with the pain. For me - the B12 and acupuncture did wonders for the pain and burning, and even the numbness.

Please give it a try.

Re: My Treatment History - Have I missed anything?

Janet C. on 1/19/02 at 03:22 (070471)

Hi Ron,

I agree with Wendy - surgery should be the VERY LAST resort. So often, the resulting pain is MUCH WORSE than the original injury! (Hard to believe, but true.) I understand that you are desperate for relief, but there are still many conservative treatments you should try...

For instance, one of my Drs. is a big proponent in the healing power of natural herbs and vitamins. These are some that he has recommended, and always encourages me to take:

Bromelain - is made up of proteolytic enzymes, from pineapples. It is used to aid in soft tissue healing, it accelerates the inflammatory healing response, and is helpful to relieve chronic pain associated with sports injuries and degenerative joint diseases.

Glucosamine with Chondroitin Sulfate - Glucosamine and Chondroitin are both naturally occurring substances in the body. It stimulates the formation and repair of articular cartilage, and prevents other body enzymes from degrading the building blocks of joint cartilage. It is also an anti-inflammatory.

Niacinimide - is a gentler form of Niacin, and helps to open up the blood flow. It can reduce swollen joints, morning stiffness, discomfort, inflammation and pain and has been shown to increase joint mobility.

DLPA - (DL Phenylalaline) helps to regulate pain and control the transmission of pain signals. This needs to be taken for at least 6 - 8 wks, before you'll notice any difference. After it builds up in your bloodstream, then it can be taken every other day, or a few times a week. It is also beneficial to take with L-Tyrosine.

SAMe - leads to a reduction in pain, improvement in function, decrease in morning stiffness, and improved mobility.

Boswellia - Boswellic acid extracts have demonstrated the ability to inhibit inflammatory mediators, prevent a decrease of cartilage synthesis and improve blood supply to the joint tissues.

Capsicum - this can affect the nerve fibers that transmit pain messages.

Curcumin - a pigment found in turmeric, it has potent anti-inflammatory and antioxidant effects. It has also been able to produce improvements in morning stiffness, walking time and joint swelling.

Ginger - This can give substantial improvement in pain, joint mobility, swelling and morning stiffness. It has an antioxidant effect, and has an ability to inhibit the formation of inflammatory compounds, as well as a direct anti-inflammatory effect.

There are also supplements of essential fatty acid oils - these good fats include borage, evening primrose, black currant, and fish oils.

And then there are also important factors such as taping, stretching, and elevation.

Have you tried any of these?

You also stated that you have not seen your treatments # 7, 10, and 12 discussed on this board. But I believe you may have mis-spelled, 'Lontophoresis'. I may not be spelling it correctly, but I think it's 'Iontophoresis'. I have also had the treatments, and found it to be quite painful, but others have gotten very good results from it, and I know it has been mentioned here.

I hope that some of these suggestions are helpful to you!

Best wishes, Janet

Re: My Treatment History - Have I missed anything?

Carmen H on 1/19/02 at 12:57 (070524)

I don't see anything about stretching mentioned in your post...or maybe I missed it? Very possible with my schedule lately.
I also was wondering if you have tried any B vitamins? while the ones that are described above are all valid and great suggestions the B vitamin groups are great for nerve problems. The Chrondoitin and Gluco and Sam E are mainly for joint mobility and keeping them 'lubed' so to speak. ;-)
Also Vitamin C is a great anti inflammatory as well. HIGH doses won't hurt you as it is released in the urine throughout the day.
I know that you may be expecting 'medical answers and suggestions' but I have found in my own experience that these have not helped me as much as alternative remedies and supplements have.
Other thoughts for pain management? Biofeedback (Laurie R knows about this) may be an option at this stage...at least for control of the pain. Stress makes it worse as we all know by now.
How many opinions have you gotten about your case?
I guess if I were taking another step 'conservatively' I would start researching the Mayo clinic for some help. But that's me....I would take it as far as I could until I got some answers.
Also Alan K has posted about Prolotherapy...I know VERY little about this so I won't comment but maybe it's something you can look into.
Iontophoresis wasn't at all painful for me it may have been worse b/c of your pain level....it shouldn't have hurt that badly though.
I hope you get some asnwers and we'll keep you in thought.

Re: Biofeedback

Janet C. on 1/19/02 at 19:48 (070577)

I have been going to Biofeedback for about a year and a half now. It is a training technique in which the patient is taught how to relax their breathing, heart rate, blood pressure, muscle tensions, and other bodily functions that are not normally controlled voluntarily.

The patient is hooked up to an EMG machine, which makes a beeping sound. By taking slow, deep breaths and relaxing, one can slow down, and lower the octave of the beeping. And when the muscles are no longer as tense, the pain levels will decrease. It is not a cure, but it has made a substantial difference in my quality of life. After the technique is taught, one can repeat the results at will, without being attached to the machine's sensors.

Biofeedback is scientifically based, and its results have been validated by studies and clinical practice. It can train individuals with techniques for living a healthier life, whether one is afflicted with a medical condition, or not. I highly recommend it.

As for the Iontophoresis, I was only put through that torture for six weeks during PT. For me, it stung and was irritating, but was 'tolerable', as they put it. You may be right, Carmen, it may have hurt worse because of my pain levels, and overly sensitive feet with RSD.

Wishing you all the best ~ Janet

Re: Biofeedback

Laurie R on 1/19/02 at 22:52 (070601)

I agree with my friend Janet all the way with Biofeedback. I have not been doing it for to long , but I think it has helped me more then anything at this point... It is so wonderful to be able to do it yourself at home to lower my pain and anxiety .... It works ......

My best to all, Laurie R

Re: questions

elliott on 1/19/02 at 23:15 (070603)

1. Can you explain your exact symptoms--type, location, severity, etc.?

2. What exactly did the MRI (swelling--of what?) and NCS (negative? positive? numbers?) show?

3. Did you follow up with the nerve conduction guy and ask him about the test making you worse?

---

Re: My Treatment History - Have I missed anything?

Ed Davis, DPM on 1/21/02 at 15:31 (070787)

Sounds like you have covered most of the bases. One set of lab tests that may be considered are thyroid function tests. Hypothyroidism increases the possibility for entrapment neuropathies. Fairly common in middle aged females, less in men.
Ed

Re: Additional Questions?

Ron B on 1/24/02 at 11:42 (071128)

Thanks for the reply! I have additional questions on the B12 & acupuncture.
How much B12 can I safely use (or is recommended)?
How many session of acupuncture did you require before you noticed improvement?
How much did each session cost?
Thank you, Ron

Re: questions

Ron B on 1/26/02 at 13:11 (071415)

Elliot,
This was the report from the Nerve conduction study (as written by the neurologist) of my left and right peroneal and posterior tibial nerves.
Impression: This is an abnormal EMG/NCV. This shows an almost textbook classical pattern for tarsal tunnel syndrome with very significant prolongation in the tibial distribution with deviation in the distal distribution of that nerve. The distal motor evoked responses of the planter nerves were significantly prolonged, especially in the medial plantar distribution. Platencies in the tibial nerve distributions were significantly prolonged. They were at the upper limit to slightly prolonged in the peroneal distributions.
After being referred to a podiatrist, I cancelled my 3-month follow up visit with the neurologist (once in the torture chamber was enough).

Re: My Treatment History - Have I missed anything?

Ron B on 1/26/02 at 13:43 (071418)

Thank you for the info! The B12 I do get is included in my daily multivitamin. I just received a second opinion and there is indeed a mass in my tunnel, a 4th tendon!!! It is called FDAL and I will write in more detail on this in a separate post!

Re: My Treatment History - Have I missed anything?

GaryZ on 1/30/02 at 22:36 (072027)

I had a similiar history (I am 45) and work up revealed a primary neuropathy.

You need a sweat test and autonomic test to rule out a small fiber neuropathy.

Read the disease called P.A.I.N at :

http://www.dcmsonline.org/jax-medicine/august2000/neuropathies.htm

Gary

Re: My Treatment History - Have I missed anything?

Jim F on 5/20/02 at 22:57 (084743)

Dr.,I've been hypo for 20 yrs .Thelast three years have had excrutiating pain in both feet with positive emgs for neuropathy.I recently went to an endo who said my tsh was off and i was being under treated with synthroid.He said it could take 6 months to feel better.Now my question is ,should i wait ,or is the entrapment irreversible?