The comments from my last post on Nina's coming Rhizotomy made me think that although I have shared about Nina's Cerebral Palsy, there are some aspects about her condition that are so common to us, that I forget they are not that common at all! So let me tell you a little bit more by answering your questions.
Does the surgery allow her to flex all her muscles so easily? Do people with CP have pain from the tight muscles as I would from a leg cramp or is it not painful? It looks so painful. Blessings to Nina and the rest of your family!
This surgery will not affect her actual muscles. This surgery deals with the nerves that are connected to the muscles. Basically, right now those nerves are not able to tell the muscles to relax, ones the nerves are "gone" then we can actually work on her muscles. It should mean that when we work on her muscles, they are able to move lot easier!
Yes, unfortunately there is pain with tight muscles. This how the Physical Therapist described it to me. Let's say you get a "knot" on a muscle (like your neck or back) it bothers you, and it even hurts, especially when you are trying to move. A knot can actually make life a little miserable. Now imagine having not one, but your muscles covered with "knots" and these are not going away. Sometimes you can manage the pain, but sometimes, it just feels like it hurts.
Within the last year I had a mate get the surgery done. He is doing all sorts of things now.
Thanks for sharing this, I love to hear success stories!
Oksana looks more like the "after" video but I'm sure it's because of her surgery. Her hamstrings are very tight though, hence the talk of botox.
There are different types of surgery. Oksana (Nina's best friend at the orphanage!) had an Orthopedic Surgery. Nina will be having Orthopedic Surgeries in the future, we will not be done after the rhizotomy. The difference is that the rhizotomy should cut down on the number of orthopedic surgeries Nina will need to have in the future. Nina has some bone deformities that will need to be addressed, but hopefully we will not have to do any tendon lengthening or muscle release.
Botox has worked wonderful for Nina. Unfortunately, it is not a permanent solution and Nina is so small (weight) that the amount of Botox we can do is minimal, therefore, we see minimal results (but we did see wonderful results and wish we could have used it more)
Wow! The surgery sounds so scary but the potential outcomes sound nothing short of a miracle!
Yes, it is very scary! If the surgeon made a mistake...I do not even want to think about it! Any damage to the spinal chord can be very damaging. We will be asking for prayer as Nina goes into this surgery. But we also agree it would be a miracle for Nina's body. How wonderful to see her released from some of her spasticity!
Oh my goodness. I looked at that link. I can't believe they can do that! I didn't realize she was in a lot of pain. I guess it's hard to know if she doesn't say anything?
It is pretty incredible to look at the link and read and see what they do, isn't it? And Mayo does the same type of Rhizotomy, so that is how Nina's would go. It helps you understand how wonderful this can be for her, while realizing the very significant risk.
I am not sure that Nina can judge the pain very accurately. After all, she has lived with it all her life. It does get worse during winter and we do see her body contracting into itself even more during these cold months. She complains more about her knees and about her feet and her braces. I think she will be able to "judge" the pain better when it is gone. Can she imagine it being gone? Does she know any different? Sadly, no.