Spasticity and Botox? - Cerebral Palsy Message Board

feelbad · 04-13-2004, 06:36 AM

Hi, i hope you all don't mind me butting in on your board but i am in need of some help.

i am not suffering from cerebral palsy, but I am suffering from alot of the same types of symptoms of it.First just let me say that i am just overwhelmed by all that you have to deal with everyday, you really show some really amazing strength and fortitude.And to the caregivers of children, well my heart goes out to you as I have a child who suffers from multiple medical problems that sometimes requires all that i have left to give.i have read alot of the threads on this board and you all really do amaze me.you all seem very caring and that is why I am asking for some help from you all.

I had to have a surgery done on my spinal cord this past sept to try and remove a glob of blood vessels that had formed inside of my spinal cord.they were starting to bleed and causing all kinds of bizarre neurological symptoms and great pain.They were only able to remove 90% which i guess is a really good thing,but the remaining 10% and the damage done to my sympathetic nervous system is causing some really painful pain syndromes as well as many really strange neuro symptoms.In doing research in how to best treat some of what i am dealing with, i noticed alot of my current symptoms are very much like what you all deal with in regard to the CP.I am currently dealing with some unbelievable spasticity in both of my legs.It is so bad that when I get up from either sitting or lying down, I actually end up walking on my toes as the spasticity that sets in is just horrible.I have to try and walk around on my toes for about fifteen minutes or so before my heels will actually set down onto the floor.The spasticity is still really tight feeling but it will usually let go enough so I can walk.Not pretty but i feel very fortunate that I can still get around.

All of my reflexes are also extremely hyper.When I raise my L leg while sitting, when I go to slowly let it back down, the knee starts this weird little siezure thing.I was reading the thread about the hyper startle reflex and can totally relate to that as I am also experiencing that as well.

I am sorry that this is so long.i just really need to know if any of you have had Botox injections for your spasticity and if so, what was the outcome?I have been getting steroid inj in my lower back to try and releive the pain and the spasticity.The first one worked for about a week and a half on the spasticity but not the pain.The second one,I just had about two weeks ago, did absolutely nothing at all on anything.I have been doing research on botox as a possible treatment for this problem but i really wanted to hear about other peoples experiences as THAT is the best way to go.If you all are not too busy, I would really appreciate any reponses.Thank you, Marcia

lastramy · 04-13-2004, 05:19 PM

Marcia,

Hi, I will take the time to give you a llittle information, but ultimately I think a neurologist or a rehab doc specializing in botox would be better for getting information...BUT....here goes......

I am on the Battling Fatigue thread on this board so if you have read anything there you know all about me but if not to keep it short........I have been getting botox injections for over a year now for spasticity/dropped foot issues. I have CP on the left side only.
I also just last week had an L5 epidural steroid injection to relieve pain and help diagnose a back problem or CP complications. My epidural injection has relieved the pain or at least 90% of it in my lower back ans some in my leg but did nothing for the spasticity which it really shouldn't. Cortisone injection therapy is giving a dose of a powerful anti inflammatory drug right to the source of the pain. My leg muscle is still tight.
Now I get about 10 shots with each round of botox. I get 2 in the gastroc musles, one in the posterior tibialis (with an electro-guided needle), one in the soleus region, 3 in the hamstrings, and 3 in the iliopsoas area. What does it do.......Well I definitely after 7 days or so feel my leg weaken a bit which is because the botox is inhibiting the acetylcholine response in the nerve endings that are constantly telling the muscles to contract. With this inhibited you have a relaxation in that area which then allows me to stretch those muscles more effectively, I can strengthen the muscles more effectively and I obtain a better gait pattern. I am able to lift my foot as opposed to "dragging" it along. I have had a lot of pain in my lower back/hip that is attributed to a weak psoas muscle. The epidural did not touch that but my last round of botox last January did. The hiking of my leg got better and the pain as if someone was shoving an ice pick into my pelvis went away. The pain has returned lately because my 3 months are up. Botox is a reversible agent so after 3-4 months the injections have to be given again.
I also am a huge advocate of massage. I can say from experience that botox is more effective when given along with physical therapy or massage.
I get a massage on my leg and back to help facilitate the botox and I get much better results. The couple of times I did not do this I didn't feel like the botox really was doing much.
I am getting my next round and a massage to follow next Tuesday. My shots are given by a doctor who specializes in rehabilitation and CP but mostly he is known as the mans who gives the botox.
It is not for everyone. I have hear others that had bad experiences with botox. It took a while to really start appreciating its usefulness and now I am all for it. My spasticity isn't as bad as yours sounds and I do have the hyper reflexes as well. I used to and to some extent still do walk up on my toes. I had my achilles tendon lengthened several years ago to help with that.

Well, I just wrote a short novel there. Sorry.
I don't know if any of this has helped you. I would definitely ask you doctor about trying it. Botox is really making it's way into the pain management scene for a lot of things including back problems.

Keep me posted on whether you decide to try it.
Take care,

Lastramy

musicmaker650 · 04-13-2004, 06:10 PM

Good luck with the shots and thearpy Lastramy...

What is your height? Just curious about the length of your legs, opposed to your overall height. I am 6 feet 1 inch tall, but the majority of that height is from my waist up...

Zagreus · 04-14-2004, 02:58 PM

My son, who is nine, had remarkable success with botox therapy. We used it three times in his leg and once in his arm. With intensive therapy afterwards he got very good results. He's growing quickly though and the last round of botox (the third for his leg) didn't work as well. He's just had his heel cord lengthened and is recuperating from the surgery. He's doing well.
To be sure you need to discuss this with your physicians and with the physical therapists. I've been pleased with how much it's helped our son and think that were it not for Botox therapy, we might have had to consider surgery for him years ago. Botox means that his surgery happened much later in his life.

musicmaker650 · 04-14-2004, 08:03 PM

Zagreus,

I would be very interested to hear about your sons progress as he ages. As a member of this Healthboard, I have noticed that other than botox and some spinal approaches, nothing has really changed in the treatment of CP since I was a small boy. I have undergone many muscle transplants in both legs, and many years of physical and ocupational thearpy in treatment of my Spastic Diplegia CP. I will be 54 in June