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

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

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...

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.

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 :)

Thanks. I'll keep you posted. Now he's still recuperating and getting used to the cast. In 6 to 8 weeks he'll be rid of the cast. I hope to have him back in school Monday and that he'll be comfortable using the walking cast without a walker by then. He's doing a good job getting around now with the walker and will soon, I think, feel comfortable letting his leg bear weight.

I do wonder if there's more emphasis today on physical therapy than there was when we were young.

Yes Zagreus,

it does sound like your son is doing great, and will do great in the near future and beyond. Swimming is a great exercise and physical conditioner. I swam like a fish when I was young. After 11, both legs were straight by surgery. I had no trouble swimming then either. My hips are uneffected by my CP, so I use them to move my legs. Where there's a will, there's a way :)

Thank you, thank you for all of your responses.This is really helping me alot.it sounds like this could really work for me. I am seeing my physiatrist on thursday of next week.my pain doc referred me back to him.he is a really great doc so i know that i will be in good hands.He was my rehab doc after my spinal cord surgery.He is from Russia and he really knows his stuff.I am going to discuss the botox with him when i see him on thursday.I will keep you all posted. Thank you so much for your help,and just for caring. it really means alot you know?Marcia

Marcia,

You bet we want to know how your doctors appointment goes! I will be thinking of you on Thursday and I hope the spasticity problems you are having can be resolved or at least toned down to something that is easier to live with. :)

I am getting my next round of botox this coming Tuesday along with a massage and truthfully I can't wait! I am having so much trouble in that left hip area, but things will be better on Tuesday.

Yes, let us ALL know how things go and good luck to you...............

Lastramy

Hi yall,

In the future, should I expect my 3 y.o. daughter (w/ spastic hemiparesis) to undergo some of these procedures you all mentioned?

thanks,
Melissa

Melissa,

Hi! I think it is possible that your daughter could need a tendon lengthening procedure or botox or nothing at all. I didn't have my tendon surgery until I was 18 and I just started getting botox a year ago and I am 39. It all depends on the circumstances and how well she progresses through her childhood. I would strongly recommend lots of exercise and physical therapy when needed. The growing years are very important.

Hang in there with everything!

Lastramy

Thanks Lastramy

My daughter's neuro wasn't very informative and he never mentioned any procedures she may have to undergo in the future. So needless to say, I began to worry when I read all the posts in this thread. But so long as some of these procedures really work, I guess it wouldn't be so bad if she needs them. Hopefully when she's older because she doesn't take too kindly to some of these new doctors...lol.

I hope your botox procedures work out well and thanks for your response.

Take care,
Melissa

You are very welcome Melissa!

Yes, I am getting my botox tomorrow, and quite truthfully I can't wait!!!!

Lastramy

Hi girls,

don't botox injections hurt? I'm going for my 3rd endoscopy Wednesday, and I'm getting my yearly Cortizone shots, in the base or first joints of my thumbs next week. Caused by osteoarthritis from using canes for the last 48 years! These shots are killers too... but woth it... I think :confused:

Musicmaker,

The botox shots only hurt if you are going for the deeper muscles and they have to use the electroguided needle. They sedate kids, and the adults have to hold their breath (thats what I do). So in all only 1 out of the 10 shots I get are painful.

I am in total agreement with you on the cortisone shots. My epidural was no picnic. I hope that goes okay as well as the endoscopy. Good luck and I hope everything turns out good for you.

Lastramy

No, they hurt. They never sedated my son and he always had deep muscle injections in the legs. They were over in a flash, of course, but he typically had several injections in the calf muscle.

Zagreus,

I got my last round of botox on Tuesday of last week. I got 2 shots on the gastrocs, 1 shot in the soleus area, 1 shot in the iliopsoas, and 3 shots in the adductor magnus. I usually get the EMG needle with the posterior tibialis shot. That last one is the one that hurts for me. I dodn't get it this time because my doc said I wasn't turning my foot inward as much as in the past so I was spared the nasty shot.
Does your son get a shot into his posterior tibialis????? The other shots hurt for me depneding on how tight I am at the time. The room was very cold when I went in so my muscles were tighter. I felt a bit more from these shots this time than before because I wasn't as relaxed.

At the clinic I go to for the shots whenever my doc gives the shot for the posterior tibialis or even the iliopsoas I believe he usually gives the kids that are real anxious "versed". This drug is given to relax the patient and also has an amnesiac (sp?) property in it so the patient doesn't remember much of what happened during the procedure. They aren't asleep just very relaxed.

How old is your son???? How often does he get his botox shots? Just in the lower leg???

Well take care

Lastramy

He's had the therapy three times over several years. And primarily just in the calf -- I'm sorry, I don't know the proper name for the muscle groups. Once in the left arm. That never needed to be repeated. It's over in seconds though. My guess is the neurologist never saw the need to give him any more medication than necessary since the discomfort was over so quickly. He's very good with giving the injections. And so far as I know it's just a regular albeit quite large hypodermic needle.
He's now recuperating from what seems to have been very successful tendon lengthening surgery. He's walking on the cast now and it's great to see his foot at a 20 degree angle. For the first time in his life (he'll soon be 10), his heel touches the floor when he walks. And he's very cheerful lately -- I think he's very hopeful that the surgery will make some things easier for him.

That is so great about your son!!! I hope he does well when all is said and done. I had that very same tendon lengthening and I am sure they gave the botox to help relax things for the surgery and make that cast more comfortable for him. Sounds like he had his gastrocs botoxed. Yes those aren't as bad to tolerate, pretty quick and yes I do agree the needle is big.
He is a brave guy!!!!!

Well I wish him well and I am glad to hear hear that things are going in such a positive direction for him.

That's great!!!!!

Lastramy

Thanks for the good wishes. Actually, his last botox was about 8 months ago. None right before the surgery. When the botox didn't produce adequate results, we decided the surgery would be the best option. We wanted to avoid excessive pressure on growth plates from the spasticity. That might have led to pain for him as he continued to grow.

I'll pass your good wishes on to him. He was very anxious going into the surgery and it helped him to hear from people on the board who'd had the surgery and who encouraged him.

I hope you're getting good results from your own last round with the botox. I'm so pleased that this therapy is available.