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.