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Hi, I am 22 years old and have spina bifida (Lipomeningocele) and have had two laminectomys performed, prior to being diagnosed I was given a heel cord lengthening surgery that caused me to have foot drop, later they did a tendon transfer and a toe fusion to correct the lengthening and straighten out a previously broken toe. I cannot move my left foot but maybe an 8th of an inch up and down and can wiggle toes slightly. I fall frequently or cut up my left foot, I am currently dealing with the second (serious) infection in my toe from hurting it and have to worry about the infection spreading because of the metal in my foot and the previous damage to the area. My right foot / leg is fully functional and very strong from compensating for the other side. From the time that doctors tried to 'fix' my foot I have wanted it all to end.

I have worn braces as child on my leg and they encourage me to ware on now, however, I don't. My gate has a limp in it, I have very poor balance due to the operations on my foot, have pain from over exertion, hurting my let / foot, cramps, and it is the only part of my self image I can't cope with. My left leg is very small from being in casts over the years and now with the foot drop I cannot build back up my calf muscle.

I have always thought about just having the thing cut off but my mother always cut off those thoughts by telling me that was a life or death solution. Now that I am older and in charge of my own care I feel like not being able to move this part of my body is holding me back.

I don't take anything for pain and avoid doctors as much as possible. I look at my left leg from half way down my calf as dead weight and that it's just there to hold up that half of me...a wood peg would work be more effective. I am starting to think that having a prosthetic would make my quality of life better, maybe I could run, jump, gain some balance back, keep up with other people when out and about. I haven't spoken with my doctor about this yet, the thought of going in there when I don't HAVE to be there makes me incredibly anxious and upset. My current cons are how others will react to it, dealing with the doctors, recovery time / pain, the thought of surgery again...

Is there someone out there who has any thoughts on voluntary amputation? What things should I consider?

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Hello Cindy Marie,

I can't say I'm in position similar to yours, but I have encountered people going through the same issues you're having. Usually when people say they want a limb amputated, their surroundings react the same way your mother did. And it's not only family and friends, it's the doctor's too - they will push you to go through all other procedures before amputation becomes viable option.

However, like I said, you are not the only one feeling this part of your body has caused you more problems and realistically removing it might actually get you better quality of life. This condition is known as body dysmorphic disorder and symptoms can vary from person to person, but in order to get a voluntary amputation approved you might need to see a psychologist and a psychiatrist who are experienced with this condition. Basically, they need to asses that you are completely aware of pros and cons, but still want the procedure,

Wish you all the bets,

Nicole

 

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Thank you Nicole,

From what I understand about body dysmorphic disorder this classifies individuals with healthy limbs and wanting to remove them? My leg is not healthy and it affects my well being.
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Hi Cindy,
yes, body dysmorphic disorder is primarily focused on individuals who have healthy limbs, but do not feel them as a part of their body. But that is the general description that covers different individual stories - some of these people are in situation like yours, where the body part had suffered or is suffering, directly causing realistic problems in everyday functioning. Of course, I can't diagnose you online, and no one would have any use of that, but I can advise you to look into finding a good psychiatrist who will confirm that you realistically know what weight limb amputation carries, but simply want to finally have at least better quality of life. That is not only necessary for you to get rid of the feelings of guilt of thinking about something like this, but it will also give a surgeon proof that you are completely aware of what you want and what is going to happen,
Nicole
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Hello I am a 54 year old female. I had a tethered spinal cord which was de-tethered years ago which help at the time with the drop foot. I was wearing an AFO for years prior to a foot fusion that I had, they fused my ankle in 2 spots in May of 2014. I have never heard of a laminectomy's! I found wonderful doctors at University of Miami that are well versed in these type situation. I think with you being so young you should see a doctor that Specializes in ankle and neuropathy. If you have a good ankle they may even be able to do an ankle replacement with would be a huge advantage for your future gait and balance. I will be happy to talk with you or provide names of doctors that may can help you. God Bless
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Cindy, I'm 25 and am in the same situation you are in. Born with a teathered spinal cord. The second cord release when I was 10 resulted in foot drop. I went through multiple surgeries lengthening heel cord and tendon transfers trying to regain a normal foot. Screws were placed to straighten out the foot. I ve broken my ankle multiple times and had three foot infections that have resulted in mrsa/staph infections requiring iv antibiotic courses via pick line. Last year I underwent a triple hindfoot orthodesis. I'm now looking at getting a calf implant to try and fix the extreme muscle atrophy. My older sister became a doctor of Orthotics and prosthetics. I have often considered or prepared myself for losing below the knee. Please message me so we can talk further!
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Hi Cindy, I’m 21 and have spinabifida and I am weirdly similar to you. My Left leg is dead weight, with no calf muscle, right leg is perfect and I’m having real trouble with infections for last few years. I’m seriously looking into amputation atm too and would love to hear what you did? Thanks a million
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ive got spinabifida im 51 had the left foot straighted and big toe as well allso had tendon stretched got no feeling in foot feels like im wearing very thick socks i could wak in alot of pain but could walk mainly cos of hip and being 2 inches shorter on my left side id say stick with it try strenghin do q gong or t chi it helps myself i had m good le amputated due to hospital neglect 2 years ago just getting back to about 70 percent to what i was if i had my weaker foot off years ago what happened to me 2 years ago id have given up and called it a day but as ive got my weak leg im building it up i could stand on it when i had two legs it would buckel and no balance but know i can stand on it for short time and balance abit i thought id pass this on never give up with ur leg or foot use manuka honey for cuts and infections it helps good luck
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