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TTS symptoms have put my life on hold

Posted by Helene M on 4/09/01 at 19:52 (044126)

My TTS symptoms seem different than most here. They are:
1. Extreme discomfort/irritated feeling in middle of arches.
2. Visible swelling/puffiness/inflammation(?) in arches. When it's really bad, arches look like 2 balloons by the end of the day.
3. Upon weight-bearing, cannot apply pressure to arches from orthotics or arch supports. Otherwise, the irritated feeling/swelling worsens. I assume this is the nerves becoming more irritated or inflamed. 'Catch 22'-need orthotics but can't wear them now. Wore them successfully at times in the past. TTS worsened over a year ago from a new pair of (not hard) orthotics and has remained the same ever since.
4. Uncomfortable, creepy feeling when arch lightly touched by fingertip(dysethesia?)
5. Heat makes it worse. I'm trying to keep my feet cool at all times.
6. Physical therapy just aggravates it.
7. Uncomfortable to drive once the TTS worsened. For a while, couldn't drive at all because of it.
8. Newest symptom, just when I thought it couldn't get any worse: pain/swelling below medial ankle.
No numbness/no tingling/no Tinel's sign. Burning only if I try to stretch. Recent positive NCS, negative foot/ankle MRI's. Recent Medrol dose pak didn't do a thing. Had only a 'PF' diagnosis for many years, only recently TTS diagnosis. Now I realize these TTS symptoms, continually diagnosed as 'PF', have been slowly developing over the years but previously unrecognized. Current dr. said I probably do have PF as well. Currently I can do very little walking at all. Most of my life is on hold. I'm sure you can all relate to the depression, devastation, frustration & fear. Fear of not ever getting better. Fear that something is controlling you & keeps controlling you, no matter how hard you try to get control over it. Yet with all this, you look perfectly fine to other people and they have no clue anything is wrong! No clear cause has been demonstrated for nerve entrapment. Dr. said it was 'probably' scar tissue in TT causing nerve compression, but I've never had surgery so where would scar tissue come from? Nothing showed in MRI. Would I be a candidate for TTS surgery?

Re: TTS symptoms have put my life on hold

Chad H on 4/09/01 at 20:02 (044130)

I am so sorry to hear about your pain. It is very upsetting to read your story and I feel so sorry for you. This board has been a great source of support and information for me. Stay with us and we will get through this together.

Regarding your TTS. Scar tissue doesn't have to come from a previous surgery. I could be caused by an injury or it could be unexplained. I was full of scar tissue before my first surgery, and I can't explain it. TTS can also be caused by pressure on the nerve from a blood vessel, or just a structural problem with the foot that has been worsening over time. Doctors really can't tell until they get in there and check it out.

I don't want to promote surgery too quickly off the bat (I've had three in 4 years), but it is an option. However, success rates vary greatly. Read the other threads on this board to get some idea of others experiences.

Where are you located? Maybe someone here can point you to another doctor, just to get a second opinion.

I am sure others will post their suggestions as well. Good luck, and keep in touch.

Re: TTS symptoms have put my life on hold

GinaC on 4/09/01 at 20:45 (044136)

Unfortunately, I can understand your fear and frustration with this situation. I'm in my 5th year of PF and was diagnosed with TT only in the last 6 months. My TT did not produce typical symptoms; had no burning, numbness, tingling, just discomfort around the ankle and heel pain, but I did test positive on nerve conduction test. Had tried pretty much all available treatments; even had ESWT for PF before TT was evident. While I was waiting to get better, I kept getting worse. Finally I opted for surgery, which was 3 weeks ago, so it is too soon to judge its effectiveness. I will share with you one thing my surgeon said that made sense to me. His thought was that if you are going to go in surgically, try to take care of every possible cause of pain. So, I had an open PF release, distal tarsal tunnel release, and spur removal procedure through one incision that is about 2 inches long. His hope is that by doing all three procedures now, I won't have to have additional surgery later. Hope he's right! Gina

Re: TTS symptoms have put my life on hold

Helene M on 4/10/01 at 16:34 (044194)

Thank you for the support. This is my 10th yr of PF. Am I the record holder on this board for the longest time with PF? It's not an honor I am happy to have. I didn't know there could be scar tissue for no reason at all. Maybe one of the drs.here can give an explanation for this. I am in the New York City area and am trying to find a dr. very experienced with TTS surgery. I thought I read on this board that some drs. will not do the surgery unless there is clearly a lesion in the TT. Should surgery be done just to see what's going on in there? Gina, what did yr dr. say was compressing the nerve & what does 'distal' tarsal tunnel release mean? Thanks.

Re: TTS symptoms have put my life on hold

Chad H on 4/10/01 at 16:45 (044195)

Maybe I should re-phrase. I wouldn't say that there can be scar tissue for no reason at all, but I would say that a person may not be able to point to a specific event (accident, fall, break, sprain, etc).

Something could have happened many years ago that didn't seem like a big deal at the time, or some structural issue has contributed to the problem worsening over time.

My point is, scar tissue is caused my injuries, repeated damage, etc. It isn't caused just because of surgery.

I can't tell you what happened to me. I sprained my ankle when I was 11, maybe that was it. I played ice hockey in college, maybe I got hit there with the puck. I don't know what happened, but my ankle was full of scar tissue when the doctor opened me up.

Re: TTS symptoms have put my life on hold

GinaC on 4/10/01 at 20:26 (044209)

I believe 'distal' means further away....the release is done fairly far down the nerve, not where the nerve originates. It has to do with the location of the release. My doctor never did say what was compressing the nerve, nor do I know if there was a lesion--no testing was done prior to surgery that would show that. But since the surgeon was going to do the PF release and spur excision,and was able to do the TT release thru the same incision, I was willing to let him do what he felt was most appropriate. One of the things that led me to choose this doctor (ortho specializing in foot/ankle) was that I felt I could trust him and his judgment. I had not felt that way about some of the other doctors I had seen thru the years. By the way, you're in luck: I think I remember reading posts by someone who had PF for 15 years before her surgery, so you don't have to be the record holder after all!

Re: TTS symptoms have put my life on hold

Helene M on 4/11/01 at 07:27 (044240)

Strange but I've never sprained or injured my ankles, as far as I can remember & the TTS is bilateral. One of my major concerns is that recovery from the surgery must be particularly difficult when both feet are bad. Of course, I would only have surgery done on one foot at a time but afterwards,I wouldn't be able to stand on my 'good' foot, because I don't have a good foot!

Re: TTS symptoms have put my life on hold

Jen on 4/11/01 at 08:07 (044244)

Hi Helene,
I just wanted to let you know I just had open TTS and PF surgery on Monday on my left foot. I've had bilateral foot symptoms for 3 years and had the same concerns regarding my right foot. If it helps, my right foot is doing fine and 'holding it's own' as the left is taking priority right now. I'm not experiencing any burning pain yet in the right since Monday and I've been hopping on it alot! I know what you mean about not having a good foot, but so far so good
Jen

Re: TTS symptoms have put my life on hold

GinaC on 4/11/01 at 09:31 (044247)

MY pf and tt are both bilateral, left (surgied) worse than right. I did have my doctor give me a cortisone shot in the right foot when he did the sugery (first pain-free shot I ever had!) and that may be helping. Also, my doctor was willing to prescribe a rental wheelchair, which I have since returned cause I didn't need it as much as I thought I would. So although I fear a major right-foot flare, it hasn't happened yet.

Re: TTS symptoms have put my life on hold

Helene M on 4/11/01 at 13:38 (044264)

Gina & Jen,
Please keep us posted on your progress. I sincerely hope all goes well.

Re: TTS symptoms have put my life on hold

Chad H on 4/09/01 at 20:02 (044130)

I am so sorry to hear about your pain. It is very upsetting to read your story and I feel so sorry for you. This board has been a great source of support and information for me. Stay with us and we will get through this together.

Regarding your TTS. Scar tissue doesn't have to come from a previous surgery. I could be caused by an injury or it could be unexplained. I was full of scar tissue before my first surgery, and I can't explain it. TTS can also be caused by pressure on the nerve from a blood vessel, or just a structural problem with the foot that has been worsening over time. Doctors really can't tell until they get in there and check it out.

I don't want to promote surgery too quickly off the bat (I've had three in 4 years), but it is an option. However, success rates vary greatly. Read the other threads on this board to get some idea of others experiences.

Where are you located? Maybe someone here can point you to another doctor, just to get a second opinion.

I am sure others will post their suggestions as well. Good luck, and keep in touch.

Re: TTS symptoms have put my life on hold

GinaC on 4/09/01 at 20:45 (044136)

Unfortunately, I can understand your fear and frustration with this situation. I'm in my 5th year of PF and was diagnosed with TT only in the last 6 months. My TT did not produce typical symptoms; had no burning, numbness, tingling, just discomfort around the ankle and heel pain, but I did test positive on nerve conduction test. Had tried pretty much all available treatments; even had ESWT for PF before TT was evident. While I was waiting to get better, I kept getting worse. Finally I opted for surgery, which was 3 weeks ago, so it is too soon to judge its effectiveness. I will share with you one thing my surgeon said that made sense to me. His thought was that if you are going to go in surgically, try to take care of every possible cause of pain. So, I had an open PF release, distal tarsal tunnel release, and spur removal procedure through one incision that is about 2 inches long. His hope is that by doing all three procedures now, I won't have to have additional surgery later. Hope he's right! Gina

Re: TTS symptoms have put my life on hold

Helene M on 4/10/01 at 16:34 (044194)

Thank you for the support. This is my 10th yr of PF. Am I the record holder on this board for the longest time with PF? It's not an honor I am happy to have. I didn't know there could be scar tissue for no reason at all. Maybe one of the drs.here can give an explanation for this. I am in the New York City area and am trying to find a dr. very experienced with TTS surgery. I thought I read on this board that some drs. will not do the surgery unless there is clearly a lesion in the TT. Should surgery be done just to see what's going on in there? Gina, what did yr dr. say was compressing the nerve & what does 'distal' tarsal tunnel release mean? Thanks.

Re: TTS symptoms have put my life on hold

Chad H on 4/10/01 at 16:45 (044195)

Maybe I should re-phrase. I wouldn't say that there can be scar tissue for no reason at all, but I would say that a person may not be able to point to a specific event (accident, fall, break, sprain, etc).

Something could have happened many years ago that didn't seem like a big deal at the time, or some structural issue has contributed to the problem worsening over time.

My point is, scar tissue is caused my injuries, repeated damage, etc. It isn't caused just because of surgery.

I can't tell you what happened to me. I sprained my ankle when I was 11, maybe that was it. I played ice hockey in college, maybe I got hit there with the puck. I don't know what happened, but my ankle was full of scar tissue when the doctor opened me up.

Re: TTS symptoms have put my life on hold

GinaC on 4/10/01 at 20:26 (044209)

I believe 'distal' means further away....the release is done fairly far down the nerve, not where the nerve originates. It has to do with the location of the release. My doctor never did say what was compressing the nerve, nor do I know if there was a lesion--no testing was done prior to surgery that would show that. But since the surgeon was going to do the PF release and spur excision,and was able to do the TT release thru the same incision, I was willing to let him do what he felt was most appropriate. One of the things that led me to choose this doctor (ortho specializing in foot/ankle) was that I felt I could trust him and his judgment. I had not felt that way about some of the other doctors I had seen thru the years. By the way, you're in luck: I think I remember reading posts by someone who had PF for 15 years before her surgery, so you don't have to be the record holder after all!

Re: TTS symptoms have put my life on hold

Helene M on 4/11/01 at 07:27 (044240)

Strange but I've never sprained or injured my ankles, as far as I can remember & the TTS is bilateral. One of my major concerns is that recovery from the surgery must be particularly difficult when both feet are bad. Of course, I would only have surgery done on one foot at a time but afterwards,I wouldn't be able to stand on my 'good' foot, because I don't have a good foot!

Re: TTS symptoms have put my life on hold

Jen on 4/11/01 at 08:07 (044244)

Hi Helene,
I just wanted to let you know I just had open TTS and PF surgery on Monday on my left foot. I've had bilateral foot symptoms for 3 years and had the same concerns regarding my right foot. If it helps, my right foot is doing fine and 'holding it's own' as the left is taking priority right now. I'm not experiencing any burning pain yet in the right since Monday and I've been hopping on it alot! I know what you mean about not having a good foot, but so far so good
Jen

Re: TTS symptoms have put my life on hold

GinaC on 4/11/01 at 09:31 (044247)

MY pf and tt are both bilateral, left (surgied) worse than right. I did have my doctor give me a cortisone shot in the right foot when he did the sugery (first pain-free shot I ever had!) and that may be helping. Also, my doctor was willing to prescribe a rental wheelchair, which I have since returned cause I didn't need it as much as I thought I would. So although I fear a major right-foot flare, it hasn't happened yet.

Re: TTS symptoms have put my life on hold

Helene M on 4/11/01 at 13:38 (044264)

Gina & Jen,
Please keep us posted on your progress. I sincerely hope all goes well.