Questions about surgery for adult with mild cp - Cerebral Palsy Message Board

stev1192 · 06-13-2004, 08:58 PM

I am a 51 year old male with very mild spastic cp on the right side (I only received this Dx when I was 35 – until then it was “weakness on the right side!). I mainly have trouble with my right foot, which drops, turns in, and rolls to the outside when I walk. I have been having more and more trouble walking comfortably in the past couple of years (mostly because of lack of availability of good shoes!), and finally went to see an orthopaedic surgeon that was recommended by my regular doctor.

I am posting this in the hope that someone has experience as to whether or not the sort of surgery I describe below is helpful, and what to expect in the way of recovery time, and increased function in my foot. The thing that I am most worried about is that the long period of inactivity that I am told is required for the surgery to heal will cause me to lose more strength / endurance than I gain.

In the past, the only remedy that has been offered has been a procedure called a triple arthodesis, which I was told would require 6 mos. in a full leg cast, plus another six months or so on crutches to recover from, and only offer very limited improvement. I have found on the web that this does not seem to be the first choice anymore

The orthopaedic surgeon that I saw most recently offered something new to me. He suggested lengthening my heel cord (which he says is very tight), a calcaneal osteotomy, and some tendon transfers (extensor hallucis longus, and possibly some of the other toe extensor tendons). His description of the recovery is 6-8 weeks in a cast below the knee, followed by one or more months in a "boot", with an AFO to finish out the year! He made no mention of any physical therapy (I forgot to ask), and his assistant says that he does not do much.

I have since seen another doctor for a second opinion. She wants me to have an EMG before recommending specific tendon transfers to determine which muscles are the strongest, but also seems to think that this sort of surgery will improve the function in my foot.

Any experiences along these lines, or suggestions as to questions to ask, etc. will be welcome.

musicmaker650 · 06-14-2004, 06:14 PM

Hi stev1192,

I just turned 54 last week... I had the heelcord lengthening when I was 7 and just about any other operation on my hips, legs and feet between 5 and 18. It is too bad that your facing this now at 51. I spent many summer's recovering from my 11 surgeries. It is certainly not easy for a child, but I don't envy you having to do this now. The surgical procedures are MUCH better today, so I believe your recovery should be a lot faster, and with much less pain...

Good luck

stev1192 · 06-15-2004, 04:21 PM

Thanks for your post, and the information. I have a number of concerns about a surgical solution to my problems. After all, to a man with only a hammer, all problems look like nails... (The corollary to this "To a surgeon, the solution to all problems is surgical"...).

I just hope that all the pain of recovery will be worth it!

prisc1125 · 06-15-2004, 08:11 PM

Hi Stev1192,
I feel I am reading my own experience with a CP dx and subsequent surgery experiences! This is so similar to me!
Like you, I was dx'd as an adult (at 30 -- now 35) and dealt with alot of the pre-op foot pain and postures/gait issues as you. I ended up having four reconstructive surgeries but after a gait test and EMG. I think those are almost a necessity to be certain the right muscles are operated on and with the right procedures.
I can provide more info about my experiences if you want.....

It DOES take that long to heal. I was more than shocked but don't want to paint an inaccurate picture for you. I did do the PT and I recommend it to loosen the scar tissue, encourage ROM/strengthening, and learn a new gait with the new dynamics.

One thing to keep in mind: if you can barely function as is, it might be worth it to go through this.

What part of the country are you in?

Cheers
Prisc1125

stev1192 · 06-16-2004, 04:38 AM

Hi Prisc1125

Thanks for the information regarding post surgical recovery, and your advise.

It would be overstating my situation to say that I am barely able to function. I go to work each day, and get around OK at the office. But when it comes to other activities, such as mowing the lawn, etc. I find that my foot ankle gets very sore, and I have a hard time the next few days, etc.

Probably the biggest factor in this is shoes. One ortho doc, that I saw years ago, suggested that I where "cheap" shoes, and just replace them often. This approach has worked for years. Unfortunately, this approach has been ruined by the the new "ergonomically correct, low impact" shoes that are everywhere. My gait tends to have me walking on the outside edge of the soles. The new, soft , sole materials compress when you walk on them, and that is bad enough, as it tends to make my foot role out even more. To make matters worse, over time, this material gets softer, the more it is compressed, making it easier and easier to roll to the outside. I recently bought a pair of name brand shoes that I wore out in 1 day! (That is to say, the sole material got so soft, that I was unable to walk in them without turning my ankle, and risking a sprain.) I used to be able to buy "court shoes", but even these are a problem now.

I have two AFOs (both for the right side) that have been custom made over the years to address these issues, but I find that they are only good for 1-2 hours at a time, and I can't walk on irregular surfaces with them at all. Further, they limit motion so much that I wonder if they will do more harm than good in the long run.

What I am wondering is if the surgical procedures suggested will enable me to wair regular shoes w/o so many instability concerns. I am particularly interested in the efficacy (sp?) of the proposed calcaneal osteotomy. This sounds especially painful, and like a one way street as far as fixing any "slight technical oversights" later. Any thoughts, especially personal experiences, are welcome.

Stev1192