Amputation as my last attempt for Pain Relief

These past 4 months have been monumental for me and my life to come. My last post in the discussion “Lower Leg Replacement” was Nov. 20, 2011 with the subject being one of resignation that amputation would not work. I still had the terrible muscle spasms in my lower left leg/foot and toes after my first nerve block. The next week my doctor from the Pain Clinic called to tell me the first nerve block had not been a medical success. He reasoned since I could still feel light touches to my feet during the nerve block period, the actual placement of the meds to the femoral and sciatic nerves weren’t technically correct. Another nerve block was done later that week and was technically correct. The second nerve block did in fact quell the horrific muscle spasms that constantly rolled through my lower leg, foot and toes. Amputation was back in the discussion.

Two weeks later I had an intrathecal Baclofen trial to see if an implanted pump would conquer the spasms. It did not. However there was an unintended positive consequence of the trial; the intrathecal placement of the Baclofen greatly helped the spasticity caused by my MS (d.’92). This tidbit would be held in check for now, but passed around so it would not be forgotten.

A third nerve block was done to confirm the results of the second. It did once again quell all the muscle spasms in my lower leg, foot and toes. This was the last test before amputation would be considered. I had a second round of meetings with the Cardiovascular Team that had previously consented to do the amputation if the nerve blocks proved to take away the muscle spasms. It was determined to be an above the knee amputation because the EM and muscle spasms had made their way to the base of my left knee, front and back.

It wasn’t just the spasms that directed me to this course of treatment. I had become house ridden because the pain in my left side had become too great to put any pressure on that foot to walk. I couldn’t go to the Y (I’m a swimmer) or to church because of the walk involved. A wheelchair could get me there and back, but the pain was so intense I couldn’t communicate with others or focus on a speaker. When I’d sit in church, the readings and homily came at me in letters instead of words. I couldn’t concentrate because of the unrelenting pain. This intense pain and spasms never let up; they were ravaging my life all day, all night, every day and every night. No medicine had touched the pain or spasms. I had tried a med in every category know to this nationally recognized pain clinic.

I was totally consumed by pain; leaving me with the next natural and logical option – amputation of my left leg above the knee. The operation was completed in mid February. I spent 7 days in the cardiovascular unit, then another 7 days in the acute rehabilitation floor. I had trained for this operation for the past few years by swimming ¾ mile 5 days a week until I was unable to get to the Y in mid December. I maintained my upper body on my Schwinn Airdyne and did the post op exercises while waiting for my scheduled amputation. I was able to get through PT and OT in 7 days and released to continue my rehab at home.

Phantom pain had always been the unknown since I couldn’t find where amputation had ever been done because of severe, chronic pain. My pain score going into the surgery was a constant 9.5+++/10. I had expected the EM pain generated by my brain to still be there after amputation, and it is. However, what are gone are the muscle spasms and the nasty physical nature of my lower left leg, foot and toes. My left ankle/foot/toes were swollen to the bursting stage, extremely painful to any touch, and horrifically bad with the heat of summer. I still have pain, and at times it can be intense but I also have extended periods of a comfortable 5-6/10. There have been some extraordinarily hot days for early-mid March in Michigan and I’ve felt the EM as pain in my right side and as phantom pain on my left side. To me this is manageable. I figure my right side is ~ 5 years behind my left, only if it progresses as my left side did. I’ve been able to use crutches to get places I couldn’t get to before surgery and go to events and actually participate instead of crawling into my pain generated shell.

Later this month I’ll have my stitches removed and the first substantive meeting with the Physical Medicine & Rehabilitation group to begin fitting of a prosthetic leg. The surgical wound needs to be healed and swelling gone to begin the fitting of my new magic leg. I have an electric scooter to get around my house (everything is on one level), crutches to help me keep pace with human type beings and a wheelchair for longer events. By mid April I should be back in the pool doing laps and loving it.

I have zero regrets after the above knee amputation. In no way do I recommend this procedure to anyone carte blanche. I have three diseases; MS, EM and Raynauds creating a “non perfect storm” in my lower extremities, and still do. The doctors are working on a med combination that could help my phantom pain and I work on the mental part everyday. I realize this is an atypical procedure. I’ve been able to maintain a positive attitude and an inner drive to be physically and mentally strong. I have a fantastic wife who cares for me and does all the chores I use to do. My family and friends are a great support system.

There is much work to be done. I will continue to post to this LWEM blog as the weeks and months progress.

What a long long journey you have gone through. Your positivity through all this has been amazing, I wish you all the luck in the world for a speedy recovery and hopefully a lot less pain.!

Very brave

I cannot imagine the courage it must have taken for you to go ahead with the amputation.

I really hope things continue to improve for you. Your strength of spirit is amazing.

Well,Well, Well . You have certainly gone through a lot in the past, I cannot imagain how u got to this point in ur life, congrads to u. U must be one strong person and I hope u all the best in the years to come. I will pray for u that things will improve and u enjoy the kind of live u so deserve. Keep going full steam ahead.

I think that anything would be considered to get out of this pain- I am grateful for your sharing, and appreciate the drive you have to move forward in this. It is sombering to me, a reality check, most certainly, and also inspirational in a human drive sense, I send you much love, prayers, and joy. Please keep me posted on any updates. ~ Heidi

You’re bravery and perseverance is inspiring. Thank you for sharing. I hope that you are blessed with a much greater quality of life!


My dad had polio when he was 3 and deals with post polio. He has broken his useless leg numerous times this last time he made the decision to have his leg amputated. Since then he has grieved his decision. The phathom pains are almost more than he can bare. I would beg you to be sure that amutation would actually stop the pain or if the pain would just become phathom pain.


I'm glad that you've had some relief Mike, I just wish it had been more and you could have got rid of the EM. It's good that you're getting out more as that's the thing I find most difficult with my EM, the restriction of what I can do. Please do keep us up to date with how this is going, at least it gives us information that will allow other members to make informed decisions about such procedures.

Hi @Mike,

Any update, 7 years later? Did you have your other leg amputated as well?

Jason R Weed

It’s been over 10 years now since my above knee amputation. I was completely house bound because EM was so severe in my left foot and leg. My right side wasn’t nearly as bad in 2012. It has become worse over these past 10 years, but nothing like my left side before amputation.

I would not change the decision to have the amputation. It gave me my life back. I was able to return to coaching basketball for 7th grade boys and girls, get back to swimming 1,000 yards five days a week and walking up to a mile a day. Just got back to enjoying life! The pain has increased over these 10 years, but I’m still able to get out and live.

I now have severe “phantom” pain on my left side, which is the neurological response to EM. There is constant throbbing and heat spasms through my “phantom” toes, foot and leg. It has gotten worse over these past 10 years. Walking with my prostheses doesn’t make it worse. I struggle at times now with the intense pain, but am still able to get up and go. I do rest a lot and keep up my exercising to stay healthy.

EM is a devastating condition. I have lived with it now for over 20 years. Please know I pray for all who are afflicted with EM. My strong faith in God has enabled me to get up each day and live in His glory.

Peace, Joy, Happiness and Love to you. Mike Clark

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