Don't want to be disabled....terrified!Posted by Candida W on 6/15/04 at 11:14 (153070)
I've been reading so many posts and my head is spinning. The TTS is getting worse. (Diagnosed about 18 months ago with bilateral TTS after the nerve conduction study but have had it probably twice that time) I am afraid of the pain of the cortisone shots but I'm going in to DISCUSS them next Thursday. I have been taking Neurontin for about 8 months (only starting close to the end of the workday). I can't say I dislike Neurontin because after a couple hours it's like Wheeee.....I'm flying! My feet hurt but who cares?!? Still it reacts on me like alcohol and I got tired of apologizing in the morning for being loud and nutty the night before. I just decreased my dosage this week to just one pill at 9:30 p.m. so that by the time it 'kicks in' I should be asleep...and the pill helps keep me asleep. I used to wake up in the middle of the night dreaming of walking on glass or being stung by bees...only to realize it was the TTS. But I found myself last night on the couch just waiting around in pain just waiting until I could take the pill before bedtime. Great life. Thank goodness for the cats! (Dumb I know but they comfort me.)
I'm terrified of the surgery but I can't live this way much longer!
I (attempt) sleep with my feet elevated and a fan blowing on them. Sometimes I put ice packs under the arches as well. The pain never subsides. It hurts when I walk, stand, rest, try to sleep. I feel as if I'll go mad. Sometimes all you feel like doing is crying but what good will it do me to feel sorry for myself. Luckily I work in an office so I don't have to walk much. I wear New Balance tennies with my orthonic with my business attire. Real attractive.
I'm 47 and not ready to be crippled. I pray that if I can get the nerve (pardon the pun!) up to get the cortisone shots, they will work and I can just be normal again. I don't expect to be active like I was before but just some relief would be a blessing. I want to ask my pod for an MRI. I just can't see how the surgery could possibly help if I don't have any soft or bony masses in the tunnel...you know?!?
Sorry this is so long...this struggle just takes so much out of a person.
Re: Don't want to be disabled....terrified!LARA on 6/15/04 at 12:14 (153080)
You don't mentioned having tried compression socks. They were magic for me - don't work for everyone, but are easy to give a try. They didn't let me return to tennis, but I have what passes for a normal life. I got the c.socks at a time I was crawling on the floor and avoiding eating so I wouldn't have to walk to the bathroom (just so you know I wasn't just some 'mild' case).
Whether you will be 'disabled' sort of depends on how you define disabled. I'm sure you have found that as we get older (I'm over 50), all sorts of ailments pop up. The reality is that we won't be able to do what 'we used to do'. Very few people can as they get older (maybe Martina Navratilove is an exception) - none of my friends. We all have something. Some more than others. Some just have chronic sinus problems, mild arthritis, but I also have a friend with M.S., another with R.S.D & fibromyalgia, another with Lyme disease that went undiagnosed for years and has left her tired - sort of mimics permanent, intermittent mononucleosis) and vulnerable to infections you and I never notice even after treatment), and they've all developed a nice life -there a lots of ways to have a nice life without doing the things you used to love. All of the above mentioned people with seriously limiting conditions have found things to make life nice that they never would have discovered otherwise.
I don't blame you for being scared, and I'm not being a Pollyanna. It takes time to adjust - to what has been lost and to finding a way to make a nice life. I just wanted you to know there is hope for not feeling hopeless or scared the rest of your life. You will find a way to make your life better - it will take longer than you wanted, but it will happen. And it's so much easier after you can find a way to make the pain stop - which most of us eventually find.
Instead of an MRI, I'd ask for an NCV test first. MRI will identify the cause of TTS - if it can be seen on an MRI, and lots of causes can't be seen on an MRI. The negative NCV test won't rule out TTS, but it can rule it in - there are few (if any) false positives.
Re: Don't want to be disabled....terrified!Candida W on 6/15/04 at 14:47 (153105)
Thanks for your reply! I had a nerve conduction study at a local hospital last summer which showed TTS. Is a NCV different? I guess my biggest fear is not being able to walk whatsoever...I live alone and fear not being able to take care of the day-to-day living things plus, of course, having the ability to work. I'm in mega-pain now but afraid that if I have the surgery to relieve the pain that I will make things worse. I plan on having a heart-to-heart with the doc next week during my next appointment. He told me that he only considers surgery if ALL other things fail and, only then, if the pain becomes intolerable. He said last time I was in that he has had patients who have had success with the surgery and some who had a return of the same problem. Now that the pain is getting worse, I will be asking many more questions rather than just asking in passing about the surgery. -- I will check into compression socks. Do they just hold your feet tight? I wear pantyhose everyday to work in my business attire...a brand that is rather tight, semi-support hose. I generally can't WAIT to get them off my feet in the evening! But my feet are so hot that I can't wait to get everything off them so I can cool them off with ice & a fan.
Thanks again for your response! I am still reading all the helpful and informative posts out here!
Re: Don't want to be disabled....terrified!LARA on 6/15/04 at 15:49 (153110)
I think an NCV is a Nerve Conduction Study is the same, but the initials don't work. I think maybe NCV is Nerve Conduction Velocity study.
I believe the best understanding/guess is that compression socks work because of hydrolics. My best guess is that if there is a mass something that is compressing the tibial nerve, then surgery is more likely to be successful. I'm not sure if scar tissue (from other surgeries, numerous ankle injuries) is able to be fixed by surgery, or if that makes surgery more risky. Someone else probably knows and will comment. If there is nothing observable causing the TTS, then compression socks are more likely to work I think. Oftentimes at the time of surgery or autopsy they find a varicose vein in the tarsal tunnel, but a VV may not show up on an MRI or other tests.
Compression socks are probably tighter than semi-support - but generally there is a #range (20-30, 30-40) which tells the pressure/inch. The milds can come in anklets if you can find them. I have to get that kind through my podiatrist. The knee sock compression hose can be found in drug stores.
Re: Don't want to be disabled....terrified!marie on 6/15/04 at 17:03 (153122)
First, I am so sorry that you have had such a struggle. I also have bi-lateral tts as many do here. Your dreams of walking on glass bring back memories for me. I had the same problems. You have every right to be scared and we all have been at one point or another. Lara made some good points she is a wonderful person and always willing to share. I am pasting a copy of a list of things that have helped me to heal. I have not had surgery. I was like you, terrified my life was forever changed but there are things you can do. Recovering from tts is like having another full time job. You must adhere to all of the things you need to do to get well. You're in for a fight and everyone here is on your side.
This is what has helped me.
Ice (frozen peas work well) for swelling. About 5-10 minutes per ankle. Two-three times a day as needed.
Light stretches......very light.
Medications: Neurontin 300 mg 3x daily, 50 mg elavil
Vitamins that I sware by: MSM, Glucosamine, Vitamin C, Magnesium. Some have had success with vitamin B6 and 12.
Compression socks and mens support socks.
Birkenstock shoes. I am especially fond of Arizona and other soft bed styles.
Progesterone cream on my ankles and knees twice daily.
My hubby MASSAGES my meta tarsals, ankles, calves and thighs. At first this was done twice a day. Now I only ask for a massage once or twice a week. NEVER massage the tarsal area vigorously. My PT and I found that out the hard way. It was a major setback.
Some have had success with Ibuprofin creams.
Light non weight bearing exercises. Swimming is great even if you just hang on to a float and kick around.
Distraction from pain. My brother, who has MS, suggested emmersing myself in activities or projects that would take my mind off my feet. It helped me maintain my sanity.
Creating this site has been one of my projects.
Everyone is different. What has helped me may not help you. Please feel free to add what has helped you.
best wishes marie
Re: Don't want to be disabled....terrified!wendyn on 6/15/04 at 19:26 (153137)
Candida, have you had blood tests done (for any other systemic problems?)
Re: Don't want to be disabled....terrified!Candida W on 6/16/04 at 15:21 (153186)
Wow....what a great support system over here! I kept reading how 'rare' TTS is and then I got over here and see that perhaps that ain't necessarily so!
I initially went for a physical when I began noticing the early signs. I had a few years prior been diagnosed with Plantar Fasciatis (sp?) but when I felt the obvious nerve electric shock/numbness/burning pain I immediately worried about the disorder that gallops thru my father's side of the family, diabetes. All my tests came back normal. Once I felt comfortable that it was a foot problem and not something else, I went back to the podiatrist.
I am going to check into the compression socks...I guess I'll check with the Pod when I go next week to see which he recommends and if I can get them from him.
There is so much good information here! I was also interested that physical therapy helped Marie. I also need to ask Pod about that. I think I just need to print out the entire thread and take that with my list of questions I'm compiling for my appointment.
I have noticed that my ankle pops sometimes when I walk...very similar to my knees with arthritis. Sometimes when the weather changes my feet hurt worse. Again makes me think that arthritis is also playing a part in my foot fun.
Re: Don't want to be disabled....terrified!gail on 6/16/04 at 19:52 (153204)
I do not know what it is like to have TTS but the way you describe your pain I can relate. I have been having PF for a year now. January-March were the worst months. I could only stand on my feet for about 1 hour a day. So, I spent a lot of time sitting down or laying horizontally. I thought my life was over. I felt crippled with chronic pain, also depressed having little energy. The visits to the pod for ultrasound treatments, ice, orthodics, cortizone shot did not help. I did not think things would get better unless I got surgery.
Surprise, I have loss 22 pounds and planning to lose more. Had some acupuncture treatments. And now, not cured but can be on my feet 3 hours/day. Although, going for walk would be painful, riding a bicycle did not create additional pain. Being out of shape from sitting around a lot, now I feel normal that I can go out ride a bike for 2 hours/3times a week
Candida, all I can say, is keep coming on the message board to talk, to read, or to ask the doctor for advise. There is a great bunch of people who sympathize with you and try to understand you. Also, we can find out about the new treatments out there, like Dr. Sandell's tranverse massage which seems promising for those suffering with PF. And I hope and hope your turn will come and someday you can write your story that things are getting better. GAIL M
Re: Don't want to be disabled....terrified!Pam S. on 6/16/04 at 23:02 (153226)
I just read your post and I wanted to respond. I had severe pain just like you around 4 years ago. I had a positive nerve conduction test and just jumped right into the surgery. You can do a search on the TTS surgery on this board and you will learn that it is no cake walk. The recovery is long and tedious and some people are no better. However, depending on how severe your pain is, even 30% better would be an improvement. I would say that is true in my case. I STILL get physical therapy at least once a year, but I also have PF. I guess I have to admit this is not something that just disappeared with the surgery. I suppose if someone was that fortunate they are certainly not spending any time reading this web site!!!
A couple of comments: You say you are very loopy on the Neurontin. How much are you taking? I still take this drug but on 400 mg at night. Maybe you could go down on the dose. They come in 100 mg. doses but you probably know that. Some people combine this with a low dose of Elavil.
I really feel physical therapy is worth while. Hopefully you have insurance that will cover this. I have had alot of ionto phorisis sp? which is a patch the therapist can apply near the tunnel area to administer cortizone. No pain and much less invasive than the injection. It does take longer but you would benefit from the therapy also. I would definitely try the PT before I jumped into surgery. Your pod will hopefully agree and write you a prescription.
I can't remember if you wear orthodics but be careful with those. The hard type can really cause you more pain.
Lara is our Queen of the Compression sock. They have helped me alot. You can ask for a script for those too. Actually, I find the anklet ones helped me more than the knees highs but I am not sure why. Tough to wear in the summer because you look really odd with those on with capris etc... oh well.
You are young and you will get better. It is just so frustrating. I had to stop tennis and walking for fitness (even thou my PT still wants me to try to walk) I am up on my feet all day which is great so for all this progress I am happy. It did not happen overnight and it is a journey. I do think TTS is rare, but it is nice to come here and not feel that way. Make sure the dr. you see has seen alot of TTS. Ask
Wishing you good luck and come back with any questions. Pam (remember none of us are dr. but we have a great crew of volunteer drs. on the other message board.)
Re: Don't want to be disabled....terrified!LARA on 6/17/04 at 06:16 (153231)
PAM S WROTE: Lara is our Queen of the Compression sock. They have helped me alot. You can ask for a script for those too. Actually, I find the anklet ones helped me more than the knees highs but I am not sure why. Tough to wear in the summer because you look really odd with those on with capris etc... oh well.
LOL. I used to get them by script until the office visit required to get a prescription cost more than than socks. However I've never seen the anklets (no toes, ends just above the ankles) in the stores, only knee socks, so a prescription might be necessary for them. The anklets are more comfortable, but if I'm going somewhere that I have to wear hose I use the knee socks.
Re: Don't want to be disabled....terrified!Karen C. on 6/18/04 at 08:53 (153371)
I wanted to respond to the Neurontin subject. I've just been increased to 800mg at bedtime. What I have found to work for me is to take it about 1 hour before I go to bed. I usually take my shower and everything at night since my foot pain is so bad in the mornings. By the time the Neurontin kicks in, I'm in bed.
Re: Don't want to be disabled....terrified!Candida W on 6/24/04 at 08:30 (153811)
I've been busy at work and unable to get over here until this morning. Thanks again for all the kind words and support! Today I am leaving work after lunch to see the Pod. I am typing a list of questions for him, many based upon what I'm reading here. I do wear the hard orthonics...I'm guessing because I have a very high arch. My older sister said I have feet like the old Barbie dolls and she's kindof right. Plus I wear a 5-1/2 wide shoe but have a very narrow heel. I wear New Balance athletic shoes to support the orthonic. I have PF as well. I guess it was about ten years ago when I first noticed that it felt like a rock was in each heel and then the arch pain began. I'd get that classic wake up in the morning and be unable to put pressure on my feet. I kept an ottoman next to my bed and I would knead on it (a trick I learned from my cat) to get my feet going in the morning.
Neuronton. Great party drug! I'm only slightly kidding since it does make me feel drunk. As the pain progressed and progressed, the doc said I could take up to six pills a day but only if absolutely necessary. And these babies are 600 mg! I, for obvious reasons, couldn't take them at work so that wasn't an option. I have decided that I can only take them late afternoon and then again right at bedtime. It seems that Neurontin really kicks in a couple hours after you take it and, for me anyway, builds over the next few hours. The good thing is that it keeps me asleep and I don't wake up (usually) at 1:00 a.m. in agony unable to return to sleep.
Well...I think I will let the Pod do the cortisone shots this afternoon. I'm nervous about that but if it helps at all, it will be worth it.