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Does TTS cause pain at rest?

Posted by John Martello Jr on 5/05/04 at 16:27 (150093)

I have been diagnosed with a component of tarsal tunnel, and my ncv test showed minimal irritation to the posterorir tibial nerve, so my ortho thinks it is more tenosynovits based on my mri. However i feel the pain constant and even at rest. Wouldn'y tendonitis cause pain when the ankle joint is moved and not at rest? Also haow acccurate are these NCV tests? I had one done by an excellent neurologist who had tons of experience with this and he said DO NOT dot the tarsal tunnel release in my case. Now my foot and ankle ortho wants me to do it because i'v exhausted all my conservartive options. I am not on any medication except Lexapro to combat the depression assocaited with this debilatating problem. Any one advice that is going through this would be appreciated. I feel like ending it!!!

Re: Does TTS cause pain at rest?

Terri on 5/05/04 at 20:47 (150108)

John, I really sympathize with what you're going through, we all do, but statements like that are very alarming. I often wished someone would just amputate my feet so I wouldn't have to deal with it any longer, but that is an extreme solution as well.

You need to look into getting some pain management going here. Has your dr offered anything, have you asked for anything? How long has this been going on? If you're in pain that severe and your dr knows about it without offering some type of relief, maybe you need to change dr's.

People worry about getting addicted to painkillers but you can manage that as well by taking them only when you REALLY need them, like at night when you need to get your sleep. A constant lack of quality sleep can affect your mood and outlook much more than you realize.

To answer one of your questions, tendonitis usually does hurt only with movement, at least in my experience with tennis elbow. Being at rest is the only time it felt good. But when the nerves are involved, I don't think any of the so-called rules apply.

I'm sure some others on the board can relate what they do to gain some relief. I exercise and love a good hot soak, others can't stand heat and use ice. Let us know what you've tried and what does or doesn't help. I'm glad you came here and spoke up. We're all in this together, you're really not alone.

Re: Does TTS cause pain at rest?

Aimee on 5/06/04 at 10:53 (150123)

I'm so glad my friend directed me to come here! For the past ... seven months, I have TTS KILLING me. I've often joked that someone could just amputate my foot and get it over with. But, I go for release surgery on May 12th, so hopefully I'll make it! Thanks for sharing!

Re: Does TTS cause pain at rest?

Ann L on 5/06/04 at 16:04 (150137)

John,
In regards to the NCV test, a positive test is more conclusive than a negative test with TTS. You can have TTS with a negative test or, as in your case, with minimal irritation showing. And you may have both TTS and tenosynivitis.

You really need to discuss with your doctor about additional medications. Have you tried any others beside the lexapro? Neurontin and topamax are often helpful with nerve pain, although with some people (like me) it requires high doses to get relief. I take 1500mg per day and I've seen where others have taken 3600mg a day or more. The pain may not completely disappear, but become more tolerable. Also, anti-inflammatory medications such as celebrex, ibuprofen, naprosyn and many others may help if you can tolerate them. Elavil, another anti-depressent, seems to offer some relief for nerve pain. I use it as do several others on this board. If you haven't tried these, talk to your doctor. They may offer more relief than the lexapro alone.

Ann

Re: Does TTS cause pain at rest?

Carol D on 5/06/04 at 16:07 (150138)

Have you had an MRI? In my case, the MRI showed the benign tumor pressing on the nerve. My HMO had resisted approving an MRI. I had surgery 11 months ago and am fully recovered. Before surgery, I had had a year of HELL with TTS and lots of meds. Good luck. Keep searching and questioning. NO one can research and advocate for yourself better than you.

Re: Does TTS cause pain at rest?

Anne G. on 5/06/04 at 16:22 (150145)

Carol, where was the tumor located? On the nerve in your foot or spine or where? Also, did HMO finally approve payment of the MRI or did you have to pay for it. Did HMO pay for the surgery?

Re: John....

Terri on 5/06/04 at 20:56 (150155)

pleeaaasse continue to talk to us. I'm concerned about you and want to be sure you see there are a lot of people out here willing to share our experiences and offer you our support.

Re: HMOs etc.

Carol D on 5/07/04 at 12:27 (150190)

Hi Anne,

The tumor (Schwannoma tumor) was on a nerve in my left foot. The HMO approved payment of an MRI which was requested by an 'out of network' foot and ankle orthopoedist whom I had consulted at my own expense. THe HMo would have paid for the surgery with a surgeon within the network. However, I became, conincidentally, eligible for Medicare and chose to have the surgery done by the 'out of network' MD who had diagnosed it and Medicare paid. A long and complicated journey, both in terms of medicine and insurance. Good Luck. Carol D

Re: Terri

John Martello Jr on 5/07/04 at 18:23 (150207)

Terri,

I am 33 and have had this for 7 months, with an MRI showing tenosynovitis of the Tarsal Tunnel TEndons and as i mentioned before the NCV test showed minimal post tib nerve irritation. My ortho FOOt& ankle wants to operate, while the nerologist i saw said not to have the operation. The success rate given to me was 50%. Those odds suck!!!

This is what I've tried for relief yet no success:

1. ICE-feels okay while massaging, but pain returns
2. HEAT- Same as ice , but seems to aggravasate it more
3. Strertching-pulling foot/toes towrd me with a towel hold for 10 sec.
4. Ankle rotations 30- 60 daily
5. 2 cortisone injections minimal if any relief , but lasted a week
6. Accupuncture- 4 treatments no relief.
7. TEns unit- feels okay , but short lived
8. Lexapro- Currently on ythis for associted depression for this condition.
Helps stay calm, but offers little pain relief.

9. Chiropractor-3 weeks of trigger point therapy on calf muscles, no help
10. Immobilization in hard cast from toes to knee.- Probaly helped the most as far as pain relief, but no fun to walk on cast for 1 month.
11. Physical Therapy- Ionto, phonophoresis,massge not much relief
12. Prayer- not helped so far but keep hope and faith.
13. orthotics- 3 pairs tried rigid, and currently have soft firm which are a liitle help.
14. Shoes-Asics,nike, if the problem is in the ankle area changing shoes is not addressing the problem.
15. Vioxx, for 2 weeks with some relief, but do not know how long to stayt on them( baad stomach)

Any other suggestions would be appreciated as to what therapy i might have neglected, besides the surgery which i do not want to rush into, even thoigh i feel like it's the answer, but based on outcomes on this site i'm skeptical.

Thanks for listening

Re: Surgery and other options

Terri on 5/07/04 at 21:03 (150214)

Well, being a surgical mess myself right now, I really can't say I'd recommend it, but then again if my original dr had done things correctly the first time, I might have had better results.

50% is not such hot odds, but you also have to consider what you've tried and where you'd like to be. Would any amount of pain reduction be worth it? Then you may want to consider this as an option for you. If not, let's look at some other meds and non-medical options.
Drugs: Vitamins and supplements:
Neurontin B6, B12, E, Glucosomine
Elavil (B vitamins build up and repair nerve tissues)
Bextra
Vicodan

Some additional exercises: (check with your dr first PLEASE!)
dorsal flexion - using one of the p.t. rubber bands, tie it around the leg of your bed in a loop, sit on the floor and place the loop around the top of your foot across the widest part below your toes. Pull yourself back until you feel it pulling your foot towards the bed slightly. Bend your foot towards your body. Repeat 20 times to start. This builds up your strength in the tendons and calf muscles. Do this for both feet to keep your strength levels even. I'm up to 60 reps per foot with the high tension band even with the scar tissue build-up and tendonitis.

Keep doing the circles but add spelling the alphabet using your big toe as the pencil point. Twice a day, each foot.

I'm not going to suggest anymore for now, if your dr approves, try these for a week first and we can discuss more later.

If you're overweight, lose some pounds! The worst thing to do is to put any additional pressure on our tootsies. Just watching your fat intake will work wonders. Don't go on the low-carb diets. You need carbs to keep up your energy level.

Exercise! Swimming is a great over-all workout. Since we can't be on our feet much, we have to be creative. You can still do sit-ups, modified push-ups (or 'girl' push-ups as some like to call them), and many floor exercises. Discuss with your therapist some options or join a gym. Just getting out there and DOING something helps to combat depression. Work on strength training. Using the weight machines, you're sitting down anyway.

As you may be able to tell, I've turned into a real exercise nut lately. So far I've carved my waistline down 3 inches. I'm a 44 yr old grannie of 2 and have a 26' waist. I may not have much control over my feet but by God I can keep the rest of what I have looking and feeling good!

Do a search here using 'Marie' and find a list she's compiled on how she manages to control this and lead an active lifestyle. She's a real inspiration to many of us.

Good luck and let me know if any of this helps you.

Re: Does TTS cause pain at rest?

Belinda D on 5/07/04 at 23:25 (150223)

Aimee, I had the surgery 13 weeks ago. So far it has proven to work. just started PT 2 weeks ago. good luck to you, Belinda (email removed)

Re: Does TTS cause pain at rest?

Aimee on 5/07/04 at 23:31 (150224)

Thanks for the info Belinda! If you wouldn't mind, could you tell me a little about what you went through? I've never had surgery and I go into panic attacks just thinking about the anesthesia (sp?). Could you tell me about pre and post-op, the pain right after and a few weeks after, what you are able to do, etc? Mine is on my left foot, and I'm wondering when I will be able to drive my standard automobile again! Thanks again!

Re: Does TTS cause pain at rest?(I have surgery schedualed for wed the 19th)

jeffery on 5/16/04 at 07:16 (150658)

I have suffered for 5 years from TTS in both my feet. I just got diagnosed about three days ago. I am still in shock, every doctor I have been to for the last five years have told me I have plantar fasceitis. I have had every kind of treatment ;Stretching every 2 hours, 8 pars of orthodics, night splints, tennis ball message, antioferisis(I don't know how to spell it), ultra-sound, orthotripsy/shockwave theripy, ice/heat, elastic foot wraps.

Both my feet have gotten progressivly worse, and now I am on 5 vicodin, 2 pamolar(anti-depressant used for chronic pain), and bextra(anti-inflamitory)a day. I still have pain and I am so tired from all the medicine I just want to lay around all day. I have lost jobs and friends from the cripling pain. I even considered suicide at times, the pain has gotten that bad. I have had to crall around on my hands and knees at home, and take showers on a stool. The only thing that has kept my going is the dog I adopted a year and a half ago. His name is Oscor he is a yellow lab, I got him when he was just 6 weeks old. I have been on pain meds for the last year so I get to take him to the park, he loves the water and to find sticks 3x as big as him. I am a broken man, this experience has been so humbling. I am 29 and had to move back in with my parents last year. I want my life back, I want to not have to take all the pain killers. I made the descision about a week ago to look into haveing a fasciotomy( I thought I had plantar fasceitis) and made about four appointments to see different doctors, I wanted to see what they all said, I wanted a doctor with a lot of experience. The first doctor I went to listened to my story and started tapping on the inside of my foot right behind my ankle. I felt these electrical pulses shoot through my foot all the way to my toes. He said I might have tarsal tunnel syndrome. I had no idea what he was talking about. He suggested I get a nerve test done, they made an appointment for me to have the test done on a monday. The next day I had another appointment to see a different doctor. He also listened to my story and started tapping on the insde of my leg. The same thing, a shot of electricity into my feet. He said I might have TTS and shedualed me to have a nerve test done upstairs an hour later. The results were positive I showed sighns of TTS. The second doctor I saw schedualed me for surgery(a nerve release) the next wed the 19th. I am just having my right foot done so I can get around but I won't be able to drive for about three weeks. The reason we decided surgery is because I have had so many treatments for plantar fasceitis and the treatment for pantar fasceitis is pretty much the same for TTS. I do feel like I have been let down by all the doctors I have seen the last 5 years. TTS is such an easy diagnosis, I can't believe no doctor has ever tested me for it. It is rare though maybe some of the doc's have have never heard of it. If anyone has had this surgery I would like to hear about it, I am worried that it is going to get worse. Then again I don't think it could get any worse. I have said that to doctors this last week, they laugh and say trust me it could. Maybe it could maybe cronic back pain or other kind of cronic pain that has no cure. I gues it is in the eye of the beholder, on my pain ometer I am maxed out, as well as ay spirit, I guess that is what I have really lost my will, my belief that I am going to get better, I have been let down and disappointed so many times, I have just given up hope. Althought this diagnosis of TTS does spark some kind of hope, hope in a treatment, because it is hard to treat an illness without a diagnosis. Well say a prair for my and wish me luck. :-)