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.

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

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!

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

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

Hi Stev1192
No problem at all offering at advice. If my experiences can help someone else, I am happy to do so!
I had very similar experiences as you with shoes. For a woman it is pretty hard to match practical shoes with work outfits. I got middle of the road quality for my dressier shoes, but, as a former runner, NEVER compromised on my running shoes. (for me, it was a torn ligament in the ankle that led to my foot's demise). Toward the end -- before the surgeries -- I was wearing cheapo shoes because I barely had to put the foot into the shoe before it took its strange shape and hope for support was lost.
I've not had to do any of the AFOs since the surgeries. I do have a nighttime splint but as I'd been active, and enjoy that, my ortho encourages me to keep it up. I swim, bike, walk and do all kinds of gym exercises. Trying to resume hiking but running is out of the question altogether. I guess the idea is that through exercise, I will strengthen and encourage ROM to all the muscles. Stretching is a must.

Good quality shoes is very important after this surgery. You definitely to want to maintain and support what you worked hard to attain! The quality is noticeable and worth the money.

I would expect, without having medical knowledge, that the proposed procedure(s) would help. By doing these things, the ortho would be realigning everything to make your foot more functional and able to wear a shoe. For me, this included a 1st MT osteotomy and calcaneal heel slide to get the foot more into a neutral plane. Don't get me wrong -- I won't be a foot model anytime soon! But, from where I started, my foot is much better and walks straight without the extreme turn out. I have prominent bony points laterally that might always be there. This is from years of wear and tear.
One thing to keep in mind -- as I am learning -- is that the spasticity always has the potential to wreak havoc on the foot. I always have pulling in the calf due to the hyperactivity in the gastroc muscles and the other muscles/joints/tendons/ligaments are affected in some compensatory way (e.g., shin splints currently). I've had to have tendons lengthened and relengthened and toes released twice. But, the trade off is worth it to have a foot that works with reduced pain and better position.
One last thing to remember:recovering from bone surgery is very painful. Again, not to scare, but I found the recovery from my MT and heel slide work to be quite painful. The soft tissue recovery was not a thrill either but I guess I could move those with ROM exercises. I had hardware fastening my bones.

Anything else, let me know.

Cheers
Prisc1125

Hi all!

I need to chime in here too about the importance of good shoes. I am a nike fan all the way, and I change out my shoes quite often.
As far as cumbersome AFO's.....been there done that! You are right to think that you are probably causing more trouble than good. Yes the heavyweight AFO's do cause some trouble with the fact that you lose some of your muscle flexibility and movement.
I have the dame problem with my foot dragging and turning in and they wanted to give me an AFO. I took my monster beast that came up to my knee and inhibited totally my anke movement. I told them thatif they couldn't do better than what I had in my hand they could forget it.
Now i have a new AFO called the "toe-off brace". You can find it on line.
It comes up to the knee in the front only and does hold the ankle to one position but it is very user friendly. It is virtually light weight and is made of kevlar and a polycarbon material. I love it and it helps tremendously.

Well I just wanted to get that in I don't know if it helps you or not.

Lastramy

Thankyou for the thoughtful information regarding my situation.

I had an EMG done this past week, and according to the results, I am a good candidate for the proposed surgery. Apparently (no surprise to me!) the muscles that raise my foot, and pull it to the outside, do not work, but all of the nerves are fine.

I will see the orthopaedic doc this week, and learn more about the proposed surgery, which I think will be to move the tendon(s) for the muscle that pulls the foot to the inside so that they raise the foot instead. I sure that there is more to this, but I will just have to wait to finf out. Needless to say, I have MANY questions.

On to the subject of shoes:

One of things that I hope to get if I have the surgery, is the ability to wear regular and available shoes. For the past 5-7 years, I have been wearing a shoe branded “Penn”, with the model name “Topspin”. These regularly sold for about $24.95. Their chief features, as far as I was concerned was that they had solid rubber soles that did not compress when I walked in them, and most importantly, did it the same way over the life of the shoe (about 4-6 weeks). They also had an insole that was easy to rip out so that I could insert my orthodics.

I speak of these shoes in the past tense, since they seem to be gone from the market. (Penn Topspins -- I wear a size 11 ½ -12, D, if anyone knows where I can buy some).

Recently, I bought a pair of “N” brand shoes for $69.95, which, like all the shoes I can currently find, had what I disdainfully call “gooshy stuff” in the soles. (As an engineer, I would say low durometer, closed cell foam). They were quite comfortable as I walked around the store for ten minutes or so, and for the rest of the day after I bought them. The next day I returned them, after work, as the sole of the right shoe had become so soft on the outside from repeated compressions (I walk on the outside of my right foot), that I could no longer walk in them without turning my ankle. Give me the old, ergonomically incorrect “cheap” shoes anyday (as long as I can get my orthodics into them!).

"I had an EMG done this past week, and according to the results, I am a good candidate for the proposed surgery. Apparently (no surprise to me!) the muscles that raise my foot, and pull it to the outside, do not work, but all of the nerves are fine"...

I was born unable to control the muscle set that closed my legs and the muscles used to straighten my legs. Through 9 muscle transplants, over 6 years (5 to 11) I eventually relearned to control these transplanted "good" muscles.
As a condition of CP, the nerves were all "good" in these uncontrolled muscles. But because they have no nerve stimulation, they atrophy.

IT IS IN THE BRAIN (the Cerebellum), WHERE THE NERVE CONTROL IS DISCONNECTED!

Steve, please tell me that you've always lived with and known that there were certain groups of muscles that you could not control. Why wasn't this proposed surgery done when you were a child? Surely you couldn't control these foot muscles then?

As far as shoes, both my feet are flat. I wore special shoes until I was 18. I have worn boots and sneakers since, with no ill effects. In other words, my physical condition has been stable since I was 11.

After seeing at least 10 different docs over the years, the past month is the first time in my life that anything but a triple arthrodesis has been proposed. As I said previously, I have always -- even as a teenager -- thought that this was the wrong approach. Apparently I was right -- as the literature seems to bear out -- and all of the other docs were wrong! The most recent doc just rolled his eyes and looked pained when I told them what I had been told previously!

Where and in what country are you? I'm in Montana, born and raised in Los Angeles, California. Did you attend regular schools growing up?

I grew up mostly in the Portland Oregon area, and then we moved to Ohio when I was 16. I attended public schools throughout. From what you are telling me, the docs in Ohio were just as useless as those in Portland.

Stev1192
This is amazing! It is a good thing you hadn't allowed anything to be done on that front. I understand the triple arthrodesis is quite painful and imposes other problems.

Does this doctor have a suggestion instead?

Prisc1125

When I was young, I attended schools for the disabled. I had friends with all sorts of conditions, from all types of CP, to bad hearts to automobile accidents. My parents were able to talk to other parents and compare notes. The school doctors were very active in experimental surgery. Remember this was in the 50's and 60's... It is now 2004, have things changed as far a new treatments and surgeries? I remember that my foot and ankle surgeries were painful, but I was only 8 years old.

Good luck, and speedy recovery :)