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Laurie - Just for you...

Posted by Ron B on 2/07/02 at 21:37 (072974)

Yes, Insurance is great when you're well. This 2nd opinion will be out of pocket & will have to include an overnight stay. It might be an opportunity to see if Cleveland really rocks. I vaguely remember a strip of bars down by the water....

Back to reality.
Gather all of your info when you go in for your 2nd opinion. This includes your x-rays, MRI, conduction studies, test results and doctors / pod / PT's notes. Remember you paid for them, all you need to do is ask. If you haven't already, put together a treatment history you can give to the doctor. This helps tremendously (this will be my 3rd pod opinion).

Remember you asked. here is my history. I cut & pasted & corrected from prior posts as best I could. Good luck & keep in touch. Ron

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) Referred to a Neurologist. 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.
3) Blood test for HNPP (genetic neuropathy). Results Negative.
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. 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.

Pod Treatments:
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)!
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. 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).
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. In my case the physical therapy was actually 'treatments' given by a physical therapist. I was given ultrasound on my inner ankles along with ice treatment. A small cup of rounded ice was applied in circular motion to my inner ankles. This became painful after about 5 minutes and was discontinued after the third treatment. I also had Iontophoresis treatments,
7) Iontophoresis anti-inflammatory treatment. This was also done as part of my physical therapy. An anti-inflammatory treatment delivered with an electrical charge. 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. Medicine is placed on one patch in the area with the most pain, in my case the inner ankle. There is only minor discomfort, and the treatment lasts about 20 minutes (they were able to do both of my feet at the same time with this small device).
8) Medications that did not work for me: Vioxx, Neurotin, and Prednisone. Pain: Mobic & Ultram. Creams: many.
9) Medications that have worked for me: Celebrex (This took 4 months for my insurance to approve. It was not on their formulary). Pain: 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 (nerve blocks) 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.
It took 7 months and a second opinion from a board certified surgeon to correctly diagnose the contributing causes of my Bilateral TTS. It is called FDAL or Flexor Digitorum Longus Accessorius. Instead of the normal 3 tendons in the foot, I have a forth muscle / tendon that reduces the volume of the tunnel and causes an irritation of the posterior tibial nerve. My pod showed me an article in the Nov/Dec, 2001 Journal of foot and Ankle Surgery describing this as a cause of TTS. The 4th muscle / tendon occurs in less than 5% of the population.

The other contributing factor was the collapse of my arches / flat feet. The result was a fairly drastic change in the shape of my orthotics and a suggested surgery to remove the 4th tendon w/ release. Also mentioned that during release surgery that he could place a titanium pin in my foot to hold the arch in the correct position.

When my MRI was initially done the report from the doctor was that my tendons were swollen. Upon further examination by my 2nd pod it was found that they were indeed swollen but I also had a 4th muscle / tendon!

The key was a good set of x-rays and a through review of the MRI by a foot surgeon. I had gathered all of my treatment history to present for the 2nd opinion. This included doctor's notes from my 1st pod, neurologist, and physical therapist.

I have only seen my new pod twice but I have much more confidence in him then my 1st pod. He is a board-certified surgeon (I inquired as to what this involved). He had to submit 200 surgeries for board review and then pass testing to receive this status. He is one of only 8 in the state of Indiana.

My new pod described my arches as collapsed and said that with age and wear that most persons experience some collapse their lifetime. My feet were fairly flat to begin with and now I have almost no arch. My orthotics have been adjusted to compensate for this.

I have seen some improvement with the doubling of my Celebrex and the new orthotics (for me this means I have slept through the night).

Answers to Q's:
Dr. Ed Davis : The additional muscle belly that I have in both feet is the Flexor Digitorum Longus Brevis (as seen in the MRI). It is located between the 1st & 2nd tendons (for me between the 1st & 3rd) .

Dr Ed - Thyroid function tests: I will have a thyroid panel done next week. Due to recent posts I have asked to add testing for B12 & B1.

Elliot - what caused the swelling: Per Dr. - Due to the length of time the nerve has been in compression (14 months) it is now hyper-excited. The nerve now causes the muscle / tendon to continually twitch. He said this was like exercising it 24 / 7 and does not believe that it will settle down on its own (after being off for 2 months & all other options exhausted). The swelling is around the tendons in both ankles.

Elliot - tampering with the foot structure: My Dr described this accessory muscle (in less than 5% of the pop.) as only providing additional strength to the toes. He said that this was from a time when we used our feet for much more than walking.

Elliot - addressing the foot structure (flat feet & collapsed arches): The Dr said that during the surgery he would place a titanium pin to provide arch support during the release healing process. He said that this would remain for about a year. Orthotics will always be required.

Elliot - How many TTS releases has the Dr done: He does between 8 & 12 TTS releases every 6 months. He works mainly with sports injuries & TTS is one of his specialties. I just found out he is friends with one of my coworkers. He spoke very highly of the Dr and mentioned that he has won several medical awards. His last FDAL / TTS case like mine was back in April 2001. When I asked how he was doing the doc said that the patient had just returned from Disney with his family & had no pain (in the feet not the wallet)! He did say that some numbness remained due to nerve damage.

Gary - testing for small fiber neuropathy: I was given a test for hereditary neuropathy called HNPP. This came back negative.

TTS Surgery details - Dr said that he makes a large (4 inch +) incision and checks all related items. Upon removal of the accessory muscle & TTS release he also injects cortisone in the area to reduce swelling. A medication pump is put in place so that I may administer pain medication directly to the site. My Celebrex would be increased to 3x a day. Elevation and Ice are required daily for a minimum of 10 days at which time the stitches are removed. No direct pressure on the foot for at least 6 weeks.
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I have made an appointment with the Dr. Yu in Cleveland on 18Feb for a 2nd opinion on surgery (3rd pod). I will present all of the info that I presented to my 1st surgeon and see if the diagnosis / treatment / surgery responses compare.

I'll keep you posted.
Ron

Re: Laurie - Just for you...

Laurie R on 2/07/02 at 22:39 (072981)

Thank you so much Ron ..... Wow you sure have done your homework ... Did your doctor tell you how long it would take you to recover from this type of surgery ?? I wish only the best .... Thank you again for posting this ... Please keep us posted and I am looking forward to hearing how your second opinion goes ... I will keep you posted also , my second opinion is on Feb 20 th ...... Laurie R

Re: Laurie - Just for you...

Ron B on 2/08/02 at 08:31 (073018)

Stitches out in 10 days. No direct pressure on the foot for 6 weeks. Titanium pin out in one year. :-(

Re: Laurie - Just for you...

Laurie R on 2/07/02 at 22:39 (072981)

Thank you so much Ron ..... Wow you sure have done your homework ... Did your doctor tell you how long it would take you to recover from this type of surgery ?? I wish only the best .... Thank you again for posting this ... Please keep us posted and I am looking forward to hearing how your second opinion goes ... I will keep you posted also , my second opinion is on Feb 20 th ...... Laurie R

Re: Laurie - Just for you...

Ron B on 2/08/02 at 08:31 (073018)

Stitches out in 10 days. No direct pressure on the foot for 6 weeks. Titanium pin out in one year. :-(