Recently I had a spinal block due to two discs pressing on my sciatic nerve. Two days after I needed to run some errands. While I was out I had my legs just go out from beneath me not once but two times. The first time I was able to get back up and act as if nothing had happened. The second time I fell so hard that I must have hit the Vagal nerve,as I urinated without even realizing it. My legs had no strength to support me. There I lay ,humiliated outside of Walmart. Thank goodness my male friend was parking the car and was able to pick up the pieces when he saw what had happened. Needless to say,I do not advise anyone with CMT to undergo this procedure. Today,I am sitting here with a badly skinned knee and foot. My back hurts worse than ever. I have had no prior experience like this one. I wasn’t dizzy.i just felt like momentarily I had no legs at all. Scary. This is my experience. I hope anyone here will think more than once before they agree to do this. I can’t speak for everyone,just myself. Karen
Oh Karen! This is terrible, and surely could have been much worse! As sore as you must surely be, at least you did not break a bone or hit your head!
Forget about everyone else, we are all human and all breakable. My concern is for you! What an awful result from your attempt to be well again!
I do not have CMT, but have back problems and Sciatica, have been through these injections, and though they may help many, I got to the point where invasive treatments only made me worse.
I hope this is the last this ever happens to you.
Sending my very best wishes for a quick recovery,
SK
Thank you for your concern. I just felt that others on here should know what my experience was. I felt as if I had no legs at all. Scary.
Yes indeed it is scary! Glad you let everyone know. My last visit to a PM Doctor they wanted to 'burn my nerves'. I told them "NO WAY" and was out the door for good. That said I have a friend who had it done for her SI joints and though she was in even worse agonizing pain for months following, she did then have relief for about a year before having to go through it all again! Personally, I'd rather swallow the pills!
Get well soon, my friend!
Exactly! I heard from the doctor who did the epidural this morning. We talked for awhile and at the end of the conversation he said how do you spell what you have!! I would think that any doctor that is working with spines,discs,and nerves would have heard of this in a medical book or online. If a patient is to have this procedure I would think he would read over the patient’s file,see CMT,and look it up! After reading he may have decided to not do it. Isn’t that part of being a doctor? I am at a loss over the incompetence of some physicians. Do no harm is the first part of their oath. We really need to be our own advocates.
How very upsetting when things go "south" after a procedure that was supposed to be beneficial! So sorry this experience was so humiliating and I can relate; I have sciatic issues fairly often and it sure is a problem with bladder control, numb legs and feet and causing balance issues and falls. Decisions are very hard as it is but when we have to consider the already difficult issues with CMT, some come and go, and others are more permanent.
Firm believer in being my own Advocate ~~~CM
I have a permanent left leg and foot impairment.i walk on my toes. If I try to get my foot to the floor my hip collapses. So I walk on my toes with a limp. Looking back,I know I had signs as a child,but they were trumped up to clumsiness and not trying. I watched my Mom in later years go through the same type of Hell I am passing through. I pray my children do not experience this. It has taken away so much at such an early age. Thank you for your comments! Karen
Karen that is terrible, so sorry that happened to you. I was 13 and under when U of M many test 3 spinals all were a nightmare to me straightening out as they hit something wrong and EMGS etc. and Mott's diagnosed me in 1973 no need the microscope, they could see with naked eye all were bad. I still cry if I need a EMG. You can read more hear on my page I made many years ago. http://www.angelfire.com/mi2/chip/cmt.html
Rita
Dear Rita,thank you for your concern. I went to your page and I cried when I read your poem. That is exactly how I feel. Left behind. I don’t blame anyone,but I didn’t ask for this either. I don’t have a moment that I am not in a level of pain. The drugs help only to a degree. The constant fatigue is horrible. I thought perhaps if I tried this procedure,maybe I could get some relief. Right now I think it just made things worse with the damage from the falls. I would love a copy of your poem. Could you email it to me? If so,reply and I will leave on here for you. Karen
How are you Karen? I'm hoping this has eased up and disappeared!
Thank you for thinking of me! My back is probably improved by 20%. I noticed that when I do certain things the pain is less. The weird thing is that it moves from the left to the right. I am very concerned about the reaction I had involving my legs. My back may benefit by a second round,but I am so afraid that next time my legs could give way in a more permanent way.i never thought that a fall would wipe me out,but it did,and the damage was permanent to my left side. I fear that this could happen again. Once again a catch22. Never an easy decision when you put CMT into the mix. My back could improve,but my legs could suffer. Karen
Karen the pain shifts with the balance or imbalance of the strain or stress or inflammation. Give it time and try to gently stretch before trying to get up in the morning. Take it slow and steady; don't push beyond pain or you will damage more rather than allow the healing; Stimulate in anyway you can, circulation to the are and BREATH; Oxygenation heals! Caution and PACE!
Have a nice Holiday and take the time you NEEd to rest, rejuvenate and be well! <3 CM
Alternate ice and heat for 10 to 15 min. intervals through the day; Start and End with ICE always!
Thank you for your help and concern. Karen