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Hello all....In short, had failed back surgery for spinal stenosis a year ago...I only had bad numbness beneath my feet..HEAVINESS!!!!...An MRI 8 years ago diagnosed this, but symptoms were very mild then... then had another MRI last year ....Stenosis had progressed, of course, after 8 years.....Finally, went to a neurosurgeon a year ago----BIG, BAD MISTAKE!.....Should have gone to a neurologist first....He checked me out....Strength was ok, ditto for reflexes, slightly weaker on right side rather than left in strength...I walked around on my heels alone for him, then my toes....I had feeling BELOW the feet, but as I mentioned, bad numbness...He was quick to have me sign for surgery....Now mind you, the pain in my lower back was tolerable with like aleve or advil...So, after a brutal 6 hour spinal decompression surgery, and going through extensive phys. rehab for 6 months just to walk again----NO IMPROVEMENT!!!!....And now I had a tautness in my right achilles tendon that I DID NOT have before surgery....Ditto for a numb right big toe....Had me on neurontin , then Lyrica and after gaining 30 pounds, I quit them....NO HELP WITH THEM....Then the jerk wants to put an electrical stimulator up my back, beneath my skin, remote control....I refused, quit seeing him..Then discovered that the stimulator only helps PAIN, not numbness....Went to a well respected ortho. Dr., and after exam, he said he thought I had 2 different issues but to see a neurologist....This past May I saw one, and he got my med. records first of course....He couldn't understand the EMG that my surgeon had done for me AFTER my surgery....He couldn't believe it was so confusing!!....So, only in there 4=5 minutes and he asks about 4=5 questions, then said to take off one shoe.....He looks from 20 ft away, says--"You got CMT!"....Sent me to a big hospital for and hour and a half EMG with a neurologist also being there...The secretary called a week later and said they got the results and that I might have a pinched nerve(s)....Dr. got on and said I tested neg. for CMT 1, and I think he said 2 also, but not certain he said 2.....He said there were so many types, and genetic testing is NOT cov. by my insurance, so, it's still CMT, and I'll see ya in 6 months....In the meantime he sent me about 9 lower leg exercises to do....I do them everyday and walk for a half hour with my dog....He had me try metanx, then I read online, after taking it for 6 weeks, that pyroxidine is toxic to the nerves in big quantities....I quit that....So, I'm in about the same shape as before surgery, with the added bonus of the toe and Achilles tendon problem....I got orthotics and think they help a bit during my walks....Do have some slight balance problems....When I sit in a car for over let's say half an hour, then get out, my feet are like 100 pounds....It takes me about 10 very small steps just to get going....Can climb up about 10 steps, but wabbly some..Asked the neurologist about the sitting for long and symptoms getting worse, and he said----"It's old age!"...I'm 66!....Same moderate pain in lower back still....Really doesn't bother me....And the neurologist did do blood tests for other things that cause my condition, about 12 of them, all were ok....(vit b 12 def. etc).....Also had anodyne during physical therapy....No help....I am NOT diabetic....The surgeon, the last time I saw the phony ,said to walk, walk, walk, walk about 10 times....The neurologist said "no walking, but cycling, eliptical and rowing are ok....So, here I am in Pa. totally confused, but the neurologist did say right away also, going back to previously written, "It's obvious by your high arches and hammertoes!"....So, you may use this on any forum, and I thank you for your time and consideration.....Is there anything else I can try?......My best, Chuckk
Hi !! That’s quite the story Chuck I have to assume you are from the states since you have to pay for genetic testing . It’s truly unfortunate that you have suffered for so long however with that said I’m new to this so don’t have many answers but What I can say is medication in my opinion is not the answer since they don’t have a cure it’s best to try natural remedies like anti inflammatory, folic acid , magnesium, and also change your diet no process foods use olive oil to cook your foods also use organic meats . I don’t know in your case if this will help some of your discomfort but your body will work with what you fuel it with . Stretching therapy is also the key to waking up those stubborn mussels the pool works wonders . Best of luck Connie
Thank you so much!....I just read an article online today that swimming in the deep end of the pool, and using a certain leg movement and stride, is the best overall exercise anyone can do to burn calories PLUS tone and strengthen those lower extremities.....Eliptical was good too....RUNNING is OUT for almost everyone if you want maximum results....Rock climbing was good too too, but can you imagine any of us doing that?....My best to you!.....Chuck....Pa., USA
I wanted to add that I take tumeric, CoQ10, Vitamin C, Vitamin B 12 and Alpha Lipoic Acid.....I've read Creatine mentioned, but don't take it because of an interaction with a drug....You know, as we all go through life, we make many decisions, big and small, And the surgery decision was a BIG one for me.....I blundered by not going to a NEUROLOGIST FIRST, not a butcher eager for business, and secondly, I should have researched it further and got another opinion or two....We live with our mistakes, but the BIG ones hurt, big time....My best, Chuck
A compounded medical food like Foltanx or PodiaPN may be good for you. My insurance won't pay for those which are all less than $100 a month, but it does pay for one that my compounding pharmacist makes for me at over $800 a month! Go figure??!!!
l am so very sorry that you went through the torture of a back surgery with not so great results. l use a compounded cream that has gabapentin in it. l really like it, but again, it's real expensive for my insurance co.
l do not know what type of CMT l have either. But in the end we have to do what we can to make it through. You said you had orthotics? Have they tried you on any AFO's? l have some but don't wear them. Part of my condition may benefit from the use of them, so l am considering using them again. l am just afraid of the excellarated muscle wasting that they can cause .
~Tami
I am sorry you got so messed up by the inept medical field. The only thing I can tell you is some of the things that help me. I take Magnesium which has relived my leg cramps. I have purchased New Balance "Rollbar" shoes which help me with my stability. I do ride an stationary, recumbent bike about 30 minutes each day (approx 6 miles, burning approx 250-311 calories depending on how fast I ride). I was initially told that I had an extra bone in my left foot, then I was told that the problem I had was arthritis, finally I went to a neurologist was tested and a specialist told me I had CMT. Sugery was done on my left foot to help realign it and keep it from rolling to the outside. It help for a few years but it is still trying to roll. The shoes help quite a bit for me. If you have a Good Feet store in your area, they sell the New Balance Rollbar shoes but I would recommend you purchase them at "OnlineShoes.com" The price is much better $90.00 vrs $150.00.
I am almost 69 (Oct 26th of this year) I was told about my CMT about 10 years ago and so far only my left leg (atrophy of the calf, hammertoes and supination has been what I am dealing with).
I wish you well and will be praying that you will get some great answers and positive, effective medical care going forward. I also encourage you to continue to update on this site, the people here are generous with their compassion and ideas and some are quick to add a little uplifting to your life through witty and clever ways. Take care Chuck
Chuckk;
Thank you for sharing your story; Time and again I hear these kinds of things and I'm dealing with CMT after 18 years of diagnosis but a lifetime of questions until my husband and a chiropractor figured it out; We went to Mayo Clinic in Rochester Minnesota before confirming it. So many times an illness triggers CMT progression, A death in the family or traumatic injury or even just a "simple" fall. You are not alone in the fact, so many doctors and nurses and so called "professionals" are not aware of CMT or if they are it's very limited. When I was first diagnosed I'd been told I had Lupus, MS or MG, also fibromyalgia and MS. This is because they diagnose what they know about that is closest to your symptoms at the time. This is why sharing, speaking out and awareness advocacy is SO important. There are others out there like you and me that are told things, even treated with drugs that actually are more harmful and exacerbating to CMT. You shared your story and talked about your experiences and by doing so somewhere down the line it will help others with properly being diagnosed. I sought a neurologist, but after 45 min. of EMG and me feeling nothing, he just shook his head and said I've never seen anything like this and had no idea what I had or what was wrong. But, "oh by the way, your bill is $1100.00, pay on your way out." My visit to Mayo was 3 days of solid specialist and tests and a new set of braces and insoles for my feet as well as night braces for my hands and the bill there was under $5000.00 but 26 specialist and the CMT blood test included, I had confirmed diagnosis. My insurance at the time paid all but $150.00 and Mayo waived that amount. Education for the doctors and medical "professionals" is lacking here b/c so many are affected mildly, severely or long term and just blown off as clumsy, lazy, or just emotionally disturbed. The patients are left to feel hopeless and frustrated so misunderstood. I would advise to seek a referral to Mayo either in AZ, FL or MI. These doctors and young interns are cutting edge on their knowledge and will get to the bottom. In the mean time,we are here for venting, sharing, encouraging and befriending all who need a listening ear.
Thank you for your reply.....I was taking Metanx, which gave Foltanx the only generic permission....After 5-6 weeks and no help, I read that excess of Pyroxidine is harmful to the nerves....This was from a CMT site, but I don't know what excess amt. that is however, I think I'm real close in saying 35 mg....I have the Gabapentin cream, and insurance does cover it, but it didn't help real much.......I forgot to mention to the group that after my 6 hour back surgery, I awoke and a nurse came over and asked how I was etc....She was nice....The Dr. came over, looked down at me, and in only his pompous and arrogant manner, he said----"You have the back of an 80 year old!"....That's all he said and walked away....I am reading everything here and want to thank all of you....Chuckk
chuckk said:
I wanted to add that I take tumeric, CoQ10, Vitamin C, Vitamin B 12 and Alpha Lipoic Acid.....I've read Creatine mentioned, but don't take it because of an interaction with a drug....You know, as we all go through life, we make many decisions, big and small, And the surgery decision was a BIG one for me.....I blundered by not going to a NEUROLOGIST FIRST, not a butcher eager for business, and secondly, I should have researched it further and got another opinion or two....We live with our mistakes, but the BIG ones hurt, big time....My best, Chuck
VietVet said:
I am sorry you got so messed up by the inept medical field. The only thing I can tell you is some of the things that help me. I take Magnesium which has relived my leg cramps. I have purchased New Balance "Rollbar" shoes which help me with my stability. I do ride an stationary, recumbent bike about 30 minutes each day (approx 6 miles, burning approx 250-311 calories depending on how fast I ride). I was initially told that I had an extra bone in my left foot, then I was told that the problem I had was arthritis, finally I went to a neurologist was tested and a specialist told me I had CMT. Sugery was done on my left foot to help realign it and keep it from rolling to the outside. It help for a few years but it is still trying to roll. The shoes help quite a bit for me. If you have a Good Feet store in your area, they sell the New Balance Rollbar shoes but I would recommend you purchase them at "OnlineShoes.com" The price is much better $90.00 vrs $150.00.
I am almost 69 (Oct 26th of this year) I was told about my CMT about 10 years ago and so far only my left leg (atrophy of the calf, hammertoes and supination has been what I am dealing with).
I wish you well and will be praying that you will get some great answers and positive, effective medical care going forward. I also encourage you to continue to update on this site, the people here are generous with their compassion and ideas and some are quick to add a little uplifting to your life through witty and clever ways. Take care Chuck
Well Viet, you had a bad experience too....I will be looking into the rollbar shoes....I do know that we all must keep moving, though difficult.....I have a YMCA membership near me, and the Silver Sneakers program they have provides free membership....It's only 2 miles away and they have a pool too....I've read somewhere here that CMT'S should do at least 180 minutes a week of stretching exercises, aerobic and light weight training....That is the TOTAL....That's about 35 minutes a day, and includes the stretching...Minimum of 5 days a week....I do 9 stretching exercises and some light weight here, then head to the YMCA for the rest....Will be doing the pool a lot this winter....The heaviness at the bottom of my feet really gets me down.....Thus, after the failed surgery, I was treated, and still being treated, for depression....And I only think that 3 years ago I entered a 3.5 mile walk, all of it very steep and uphill, and finished it without stopping once....I have learned that life is a gift, but as we age, we never know what's around the next corner...Thank all of you so much!!!
Well CM, I thought I had a roller coaster ride.....Oh my!.....God Bless you....I have read and heard that Mayo Clinics are the best....And for so long and how much you had to endure....I don't know who or what told me to NOT let that surgeon put a stimulator up my spine, but immediately I said----NO!....He then ordered the 10-12 blood tests to check other things AFTER the surgery was done....Why not before?.....The new neurologist had me get them plus a new EMG, but, to tell you all the truth, I'm still in a maze....Looking for maybe the type, as I tested neg. for the first 2, or is it the beginning of something else??....Seeing neuro. on the 24th.....I'm glad you got to the rock bottom, but wow, to go that long....It's just inexplicable!.....My best to you and thank you!!.....Chuckk
CM said:
Chuckk;
Thank you for sharing your story; Time and again I hear these kinds of things and I'm dealing with CMT after 18 years of diagnosis but a lifetime of questions until my husband and a chiropractor figured it out; We went to Mayo Clinic in Rochester Minnesota before confirming it. So many times an illness triggers CMT progression, A death in the family or traumatic injury or even just a "simple" fall. You are not alone in the fact, so many doctors and nurses and so called "professionals" are not aware of CMT or if they are it's very limited. When I was first diagnosed I'd been told I had Lupus, MS or MG, also fibromyalgia and MS. This is because they diagnose what they know about that is closest to your symptoms at the time. This is why sharing, speaking out and awareness advocacy is SO important. There are others out there like you and me that are told things, even treated with drugs that actually are more harmful and exacerbating to CMT. You shared your story and talked about your experiences and by doing so somewhere down the line it will help others with properly being diagnosed. I sought a neurologist, but after 45 min. of EMG and me feeling nothing, he just shook his head and said I've never seen anything like this and had no idea what I had or what was wrong. But, "oh by the way, your bill is $1100.00, pay on your way out." My visit to Mayo was 3 days of solid specialist and tests and a new set of braces and insoles for my feet as well as night braces for my hands and the bill there was under $5000.00 but 26 specialist and the CMT blood test included, I had confirmed diagnosis. My insurance at the time paid all but $150.00 and Mayo waived that amount. Education for the doctors and medical "professionals" is lacking here b/c so many are affected mildly, severely or long term and just blown off as clumsy, lazy, or just emotionally disturbed. The patients are left to feel hopeless and frustrated so misunderstood. I would advise to seek a referral to Mayo either in AZ, FL or MI. These doctors and young interns are cutting edge on their knowledge and will get to the bottom. In the mean time,we are here for venting, sharing, encouraging and befriending all who need a listening ear.
Hi chuck,
Firstly I'd like to welcome you to the group! These are some of the nicest people you will ever converse with, who have gone through many trials and tribulations and have waited up to 65 years for a diagnosis. I think you are going to like it here and fit right in!
Wow, that was a LONG RIDE!
So sorry that you had such a bad experience with the Neurosurgeon, and that sounds almost too mild for your ordeal!
I too have Spinal Stenosis that my GP keeps telling me needs an operation, my Rheum says not yet, and my Chiro says he understands the thinking of both, so I get the 'confused' part, I live in that limbo! Though I do not have CMT, I do have genetic autoimmune and some of the same problems.
So to go ahead and answer your question of what I'm doing here if I don't have CMT is this... When my mom fell and broke her hip, it was necessary for me to resign my moderating posts. I was an active Fibro mod, and a back up on psoriatic arthritis and lupus. All of which are huge, busy groups. When I returned dancermom asked if I wanted to go back to fibro or work some of the smaller groups that had become inactive. This group was so inactive, it was on the list to be closed, and I grabbed it! I am happy to tell you that it is beginning to really thrive! It takes group effort and participation to keep things moving along! I congratulate each member for making this group possible!
I belong to a Spinal Stenosis group on Face Book and there are some success stories, as well as the horror stories. One thing is for sure, your chances are as diverse as it gets when go for back surgery! Seems as though most Neurosurgeons will tell you it's a last resort! Now, that said, my mother had successful disc surgery 20 years ago, and it was a miraculous help, as she could not even stand up before the surgery was done! Up until her fall down the stairs, she got around better than I, since the fall, she uses a cane, a rollator if we leave the house, but I have just started to need a cane, so most days she still gets around better than I, and she is 82!
I also talk to my Chiropractor about these possible surgeries, telling him that a very high percentage of the SS sufferers go to the laser places. He says though the fact that the laser 'cauterizes the wound from surgery, and speeds up healing, it is just not quite perfected yet".
Does that lower back pain of yours include feelings of incredible 'pressure', by any chance?
The best way I can explain the neuropathy I have due to collapsed discs and spinal stenosis/scoliosis, it that it feels like the finger, hand, foot have 'gone to sleep'. Not only is there numbness, but a tingling sensation, and pronounced weakness. Is this the same thing you experience?
Looks like you are taking some good vitamins. Evening primrose oil is good for neuropathy too! I have Sciatica, so take Lyrica, but that has helped to pack weight on me too!
So good to have you with us, chuck.
Wishing you well,
SK
How are you doing, chuckk?
Well, not much new, still totally frustrated!!....Bottoms of feet feel like they weigh 20 pound apiece....Must watch how I walk, as because of this, 'balance' becomes a problem....Not much tingling, mostly ,'numbness,' and that includes the right Achilles Tendon too!....I can still walk on my heels or toes for exercise..My lower back pain is moderate at the bottom middle, and radiates to the right side a bit....Hurts a lot more at the end of a walk......Last neuro. who just checked me said she agreed with EMG from major University hospital---Nerve impingement, S1-L4, but superimposed upon an idiopathic neuropathy...CMT1A ruled out because it's not dymenilating..Isn't CMT2 dymen.??.....Was never checked for that!!...I'm almost 90 percent sure that I did 'not' have right achilles tendon numbness prior to surgery a year ago that proved useless for SS....So last Friday my primary care Dr. had received all these reports, I repeated my whole story, and he told me his mother -in-law went to 8 Dr's before finding out her spinal problem....Isn't that nice?????....He wants me to go to another major Univ. hosp. and get intensive testing...Lots of tests, not just EMG....This last neuro. who replaced the one who lied to me said there's nothing to give for numbness and would see me in Feb. and after checking my feet, said I did have significant neuropathy......So, I'm here waiting.....Trying some accupuncture...Had 2 sessions...Will write more later on that....Thanks to all and God bless!!