lliu Posted November 11, 2007 Share Posted November 11, 2007 i saw my doctor (a general practitioner) today. he was going to prescribe baclofen but i told him i would prefer to try botox injections. i thought and expected him to try to dissuade me but he agreed to let me make my own decision. i had read about both treatments and felt the botox would be more effective so i expressed my feelings. he advised me to see my neurologist and if i didn't get results he would make an appt. w/another neurologist to get the botox shots. i appreciated him listening to me and allowing me to make up my own mind about the course of treatment i wanted. i guess sometimes we need to be our own advocate if we are determined to recover from this enemy we call stroke. Link to comment Share on other sites More sharing options...
dstraugh Posted November 11, 2007 Share Posted November 11, 2007 Good for you!!! Please be sure to keep us all updated on how the treatment goes. Link to comment Share on other sites More sharing options...
merichsen Posted November 11, 2007 Share Posted November 11, 2007 Louise, When I first received Botox injections I anticipated immediate results and was disappointed when that did not happen. It took a week or two to really take effect. I just wanted you to know that it takes a bit so you're prepared and aren't expecting immediate results and disappointed like I was. I was bummed until it kicked in, and when it did :cloud9: :Clap-Hands: :Clap-Hands: :yukyukyuk: :cloud9: :bouncing_off_wall: :happydance: Good luck Maria :friends: Link to comment Share on other sites More sharing options...
2ndChance Posted November 11, 2007 Share Posted November 11, 2007 Louise: if your neurologist does not administer Botox (many don't) you may need to see a physiatrist. They specialize in paralysis rehabilitation. Find one here: http://www.e-aapmr.org/imis/imisonline/findphys/find.cfm Rene Link to comment Share on other sites More sharing options...
lliu Posted November 11, 2007 Author Share Posted November 11, 2007 rene, thank you for the link. i am seeing my neuro tomorrow and will find out if he will let me try botox. if he doesn't, i will go back to the doctor i saw yesterday who said he will make an appt. for me w/ a doctor that does administer botox injections. Link to comment Share on other sites More sharing options...
lliu Posted November 13, 2007 Author Share Posted November 13, 2007 okay gang -- here's an update: i met w/ my neuro today who told me botox only helps when you don't want movement in specific areas. well, my problem is that when i start walking my arm comes up to my waist and stays in a bent position until i am in a sitting position. my fingers curl tightly when i exercise too. because of the stiff position of my arm, i am always knocking things off the desk or table. although my neuro does not use botox, he referred me to another neuro who does use botox for spasticity. Link to comment Share on other sites More sharing options...
bella Posted November 21, 2007 Share Posted November 21, 2007 just saw my doc yesterday. says I probably won't get any better :Tantrum: than where I'm at(don't want to hear that but won't give up either). my gait is very choppy with a cane and afo. can't seem to bend my knee and my hip swings out instead. now it seems the problem may be that my foot and toes are so tight and curled under that it's stopping me from walking any better. I've had botox off and on for other areas but now he'd like to try to release my toes(I already take just 40mg. baclofen a day...doesn't seem to help). has anyone tried botox for the foot or toes? let me know! thanks! beth Link to comment Share on other sites More sharing options...
lliu Posted November 22, 2007 Author Share Posted November 22, 2007 beth, first of all, i would get another doctor just because of his comment that you won't get better. i think that was inexcusable and reckless. i am not sure exactly where i will get the shots. i have most of my stiffness in my fingers and my arm. my toes curl when i'm doing my certain exercises. i tried baclofen, but it just made me tired all the time. i have found a lot of info about botox shots on the internet. just google "botox shots for stroke patients". talk to your neuro and keep asking questions until you get the answers you are satisfied with. good luck and hang in there! Link to comment Share on other sites More sharing options...
chofvander Posted November 22, 2007 Share Posted November 22, 2007 I tried both baclofen and botox and neither worked as well as I had expected. The botox made my other muscles around the site of the injection weaker and the baclofen just weakened whole body. Needless to say I've stop both of them. Have you tried Saebo-Flex http://www.saebo.com . I had doubts about it working but after 8 weeks I am moving my arm and wrist. Link to comment Share on other sites More sharing options...
lliu Posted November 27, 2007 Author Share Posted November 27, 2007 i saw an ad for the saeboflex, but found out the device is pricey. if insurance covers the cost i wouldn't hesitate to try it. for now, i am hoping botox will help. i guess it works diferently for everyone, so we'll see. i have an appt. with my neuro for the first shot on wednesday. Link to comment Share on other sites More sharing options...
merichsen Posted November 27, 2007 Share Posted November 27, 2007 Louise, If your doctor writes a script for the Saebo as a therapy device, insurance should go with the program. I had BBBS and they paid for it. Good luck it's well worth the effort and good luck with the botox you'll soon be doing the :happydance: Maria :friends: Link to comment Share on other sites More sharing options...
pprovost Posted November 28, 2007 Share Posted November 28, 2007 I have tried baclofen and botox. The advantage with botox is that the medication works directly in the location of the spastic muscles and not in the body at large. I am 10 years post-stroke and it appears that much muscle in my lower leg and foot have atrophied over time rendering the botox( terribly expensive stuff I might add but maybe cheaper in Cuba LOL) I didn't tolerate Baclofen nor Zanaflex. All they did was make me sleepy. If the Botox works for you that is great but I hope you have good insurance as it is nearly $1000.00 a pop here in Canada never give up Pat Link to comment Share on other sites More sharing options...
dreinke Posted December 5, 2007 Share Posted December 5, 2007 I would also agree that you need to see a new doctor, If the new one doesn't mention neurol plasticity for long term recovery of stroke defects then keep going on until you do find one. Regarding the curled toes what I found worked the best was a new AFO with a built in metatarsal bump and toe crest. If you can't get a new AFO then the internet has various places that sell metatarsal pads and toe crests that work almost as well. This tidbit came rom my OT, my PT was not NDT trained and my doctor only mentioned snipping my tendons to cure my curled toes- at least 20 years out-of-date. Regarding baclofen, it never did anything for me but make me sleepy, Zanaflex was no better. Botox worked in my biceps, at least I could start to fire my triceps, Botox for my toe flexors didn't work Hang in there, Dean Link to comment Share on other sites More sharing options...
jadegreen Posted January 4, 2008 Share Posted January 4, 2008 i have tried both, baclofen made me throw up, zanaflex i tolerate better in that regard, it does add to the sleepiness tho. i'v had 4 sessions of botox in increasing doses as there was no sign of anything, my pain specialist has decided that its pointless having another even higher does as it would have done something by now if it was going to, i'm having a lignocaine infusion on the 11th to try to combat this horrific pain. cheers Jade Link to comment Share on other sites More sharing options...
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