Sidney and SPML

Today we are going to hear about SPML from the perspective of a 13 year old girl. Sidney has cerebral palsy and recently underwent SPML with Dr Yngve. Sidney's family heard about this surgery from her physical therapist.

Why did you decide to try it?

Well.. being only 13, I don't think I I had much of a choice!

How old was your child when s/he started this treatment/received this surgery, etc?

13

Please share some of the changes (good and bad) you saw in your child:

Good: I can straighten my knee almost all the way! Walking on my heel much better. 

Bad: My heel hurts badly when I walk (Right now I have a cast on). Temporarily worse balance impairment.

Would you recommend it to someone in a similar situation?

YES

What do you wish you had known when you were making the decision to try it out?

The heel soreness.

Please share some of the details of your experiences, past or present. By sharing, we are a support system to each other as we each try to navigate through the special needs world!

Had all three palaces done in my right leg (ankle, knee, and groin area) Pain isn't that bad. But muscle spasms last a little bit longer. Heel pain is really the worst of it all. The four weeks I have to wear a cast are uncomfortable, but bearable. I have to wear a knee splint for at least a month while sleeping. 

For the first 2 days it was really hard to walk because of soreness, so to go long distances, I was in a wheelchair. Then for 2 weeks I had my walker that I barely use. Now 2 1/2 weeks after surgery, I walk independently, but balance is greatly impaired for a while (doctor said it was normal) I get my cast off next week.

Sidney, thank you for sharing. I hope you will let us know how it's going in a couple of months, once you've had some time to get used to living without a cast again!

Sharon and SPML

Sharon has cerebral palsy, and is somewhat of a pioneer in the SPML world, being probably the first senior to undergo the procedure! Dr Yngve of UTMB performed her SPML in June 2011, when Sharon was 67 years old. Having lived with CP her whole life, Sharon decided to try SPML to address some mobility issues. She heard about it on the internet.


Please share some of the changes (good and bad) you saw in yourself:
My right leg was bent inwards & I was wearing a foot/ankle brace because the foot rolled inward also. After the SPML, which was done on both legs, my right leg & foot are straight!!!!!!! It's much much easier to walk, my balance improved, I have more energy during the day, & I hopefully will be mobile the rest of my life. Some downsides.....the muscles in my legs are weaker so I've needed P.T., I have a routine exercise program that I do daily which takes about 45 minutes, the strength of the muscles are slower to regain than I expected. I must say that the benefits far outweight the "downs"!
Would you recommend it to someone in a similar situation?
In a heartbeat :)
What do you wish you had known when you were making the decision to try it out?
Because I was the first senior to have this procedure done by the doctor, I was a little nervous. But if I didn't have it done, I was going to be in a wheelchair & that was not acceptable to me. I do wish I had been told of the intense spasms upon waking up from the procedure. That was the worst part for me. The doctor explained that it was my body wanting to go back to the way it had been for 67 years.
Please share some of the details of your experiences, past or present. By sharing, we are a support system to each other as we each try to navigate through the special needs world!
I didn't walk until I was 3 yrs. old. Had full body braces until age 10, at which time I had an operation. After that, I did not have to wear the braces. At age 50, I started noticing little things happening, like my balance was worse. Over the years, the aging process is more pronounced with C.P. folks and my leg started turning inward more & more. I happened to see a photo of a young girl who had the SPML & that picture could have been me...my legs looked exactly like hers before the procedure. That is when I started checking it out. It took me 9 months before one of the doctors agreed to do this on me. I kept being told I was too old & it's mainly for children. For me, it's been wonderful and I have my mobility back to where I can DO things!


Thank you so much for sharing, Sharon! It is great to hear the perspective of an adult. I know for me, it helped me be more aware of what my daughter went through when she had SPML. We'd love to hear from you again in June 2012 to see how everything is going!
To read more of Sharon's experience, click here.