tom71 Posted April 2, 2006 Share Posted April 2, 2006 Hi friends, I'm going in next Friday to receive my test dose of Baclophen injected into my spinal area to see if the intrathecal baclophen therapy will work for me, if so I will schedule a date at a later time to have the pump surgically implanted, hopefully the test dose will show a reduction in spasticity so I can proceed with the pump. How many others have had this done, is it painful, or worth doing? God Bless, Tom Link to comment Share on other sites More sharing options...
door60 Posted April 2, 2006 Share Posted April 2, 2006 . Please explain this proceedure -- I am not sure what you're referring to, and of course, I would like to know about the latest and greatest therapies.... Dorrie Link to comment Share on other sites More sharing options...
fking Posted April 2, 2006 Share Posted April 2, 2006 Dorrie and Tom, our CEO Steve uses the pump, you may want to PM him for first hand information. Link to comment Share on other sites More sharing options...
jriva Posted April 2, 2006 Share Posted April 2, 2006 . Fred, Steve has posted about his pump nine times. You can access all the threads that he mentioned his pump in through this link: http://www.strokeboard.net/index.php?act=S...s&highlite=pump Jean Link to comment Share on other sites More sharing options...
tom71 Posted April 2, 2006 Author Share Posted April 2, 2006 Dorrie, The procedure I'm having done is where they inject liquid baclophen into the intrathecal area around the spinal cord to see if the baclophen will decrease my spasticity, if so then at a later date they will surgically implant a pump into my abdomen that will pump liquid baclophen to my spine every day all day to try and decrease spasticity, many people take oral baclophen to help with spasticity, but it has alot of side affects (like being sleepy all the time), taken in the pill form the medicine is disperessed through out your entire body and less efective on the muscles that actually need it, therefore casusing the side effects, however through the pump it can be directed only to the areas that need it, therefore as I'm told less side affects. I hope this explains the therapy. God Bless, tom Link to comment Share on other sites More sharing options...
door60 Posted April 2, 2006 Share Posted April 2, 2006 Thanks, Tom for the info. I hope it works out perfectly for you..... Dorrie Link to comment Share on other sites More sharing options...
Marnie Posted April 3, 2006 Share Posted April 3, 2006 Tom :yikes: this is all new to me I only ever heard of baclofen tablets muscle relaxent that I have used but, from what I read about Steve and his pump and what is to happen to you I wish all goes well for you Tom. Pleae keep us infomed on how all goes. There has been a success rate from what I read online about it so good luck you wil be in my thoughts. Link to comment Share on other sites More sharing options...
tom71 Posted April 3, 2006 Author Share Posted April 3, 2006 Marnie, Thanks for your well wishes,I'll keep everyone informed. God Bless, Tom Link to comment Share on other sites More sharing options...
SteveH Posted April 3, 2006 Share Posted April 3, 2006 Hi Tom; This sure sounds like the way to go, i'm starting the pills today myself. But the other way sounds better, its so painful dragging the foot and having the elbow stiff. Good Luck, I hope everything works out. Steve :big_grin: Link to comment Share on other sites More sharing options...
tom71 Posted April 8, 2006 Author Share Posted April 8, 2006 Friends, i went in yesterday morning at 8:00am,and the doctor first examined both my left arm and leg to assess the spasticity, then he proceeded with the liquid baclophen injection into my spine,it was a little painful ,but tolarable by 9:30 I was up and walking around(killing time) until the next spasticity assessement at 10:15 at that assessement the spasticity had already began to decrease,I was then told to go kill more time untill the final assessement at 12:15, where at that time almost all of the spasticity was gone in my leg, so after talking things over with my Dr I was sent on my way home.My wife and I were both impressed enough that I am going to set up an appointment next week to go back and get the pump surgicall implanted, and at that time the doctor said he could place the catheter higher in the spine so that I may get results in my arm as well as my leg.keep me in your prayers for the surgery.I'll report back after the surgery God Bless, Tom Link to comment Share on other sites More sharing options...
fking Posted April 8, 2006 Share Posted April 8, 2006 Tom, thank for getting back with your test results. Do you feel better and less spastic with the injection? Was your leg/arm harder to stretch out, seeming like it was drawn up a bit?? How is that compared to the pill? Link to comment Share on other sites More sharing options...
tom71 Posted April 8, 2006 Author Share Posted April 8, 2006 Fred, Yes my leg felt much better, but it didn't do much for my arm,the doctor said that when I get the pump installed he will place the catheter higher in my spine so the medicine may help my arm too,as far as comparing it too the pill it is hard to compare the too, but with the liquid injected or delivered through the pump you can use a much smaller dosage because it is only delivered to the affected areas and not the entire body through the bloodstream, and My leg was loose within 4 hours, the test dosage does wear off in about 10 hours but once you have the pump it is delivering medicine constantly everyday, so you should stay loose. God Bless, Tom Link to comment Share on other sites More sharing options...
bstockman Posted April 9, 2006 Share Posted April 9, 2006 Tom so glad the injection worked for you... will keep say prayers for surgery. Wishing you the BEST Bonnie Link to comment Share on other sites More sharing options...
mrsbumps Posted April 17, 2006 Share Posted April 17, 2006 Hello all....How are you doing? Happy Holidays. This question is for Tom. My father's neurologist wanted to try the bachlofen injection to see if it works on my father and if it works he wants to implant the pump. I have heard good things from the neurologist and bad things from the physical therapists so I figured I would ask people who have the pump to see if it really does help. Do you notice a big difference and does it help you with your mobility also or just with the pain and spasticity? I also wanted to know where is the pump surgically implanted? Does it stick out of the body or is it implanted inside? HOw do they control the medicine to be put into the pump? I am sorry if these are silly questions. I just want to get as much information as I can before I even consider this for my father. Thank you very much and Good luck to you. I will pray for you. Roseanna mrsbumps Link to comment Share on other sites More sharing options...
tom71 Posted April 17, 2006 Author Share Posted April 17, 2006 Roseanna, So far all I have had done is the trial, I'm still waiting for a date when they can install the pump, as far as where the pump will be it will be implanted just under the skin in the abdomen, once the pump is in place they program it to deliver the medicine, the programming is all done with an external wand that they hold over the pump, so once the pump is in it can be reprogrammed to acheive the correct dosage, as for the refilling of the medicine the pump has a refill port in the center of it, so they can refill it with an injection, like getting a shot! as for seeing the difference in mobility yes I could see a big reduction in tone during the trial alone, and according to my doctor once a person has the pump they will see a bigger reduction than in the trial due to the constant flow of medicine, I hope I have answered some if not all of your questions. God Bless, Tom Link to comment Share on other sites More sharing options...
mrsbumps Posted April 18, 2006 Share Posted April 18, 2006 Tom: Thank you for your help. I wish you luck...Keep me posted... Roseanna mrsbumps Link to comment Share on other sites More sharing options...
rosejill Posted April 18, 2006 Share Posted April 18, 2006 Tom, I really hope all goes well for you.Please keep us informed....rose Link to comment Share on other sites More sharing options...
Marnie Posted April 18, 2006 Share Posted April 18, 2006 Tom I am so glad to hear how well you have got on with the injection, and how your body and muscle spasms have reacted to it :kicking: :kicking: :kicking: I can remember the relief that I was given from receiving botox injections, which like you I got instant or a few hours after relief. Please keep us all informed as to how you are progressing and getting on :hug: Link to comment Share on other sites More sharing options...
tom71 Posted April 19, 2006 Author Share Posted April 19, 2006 Well, I finally got an appointment set up and the earliest the can do the surgery is May 8, I can hardly wait :happydance: God Bless, Tom Link to comment Share on other sites More sharing options...
lori2050 Posted April 28, 2006 Share Posted April 28, 2006 Well, I finally got an appointment set up and the earliest the can do the surgery is May 8, I can hardly wait :happydance: God Bless, Tom For all those with questions, I had a baclofen pump put in last summer. I have to tell you "I" have had numerous problems with mine but not every one does. I have had to have the catheter replaced twice because the pump flipped in my abdomen so they finally moved it to my back/hip area. I haven't really had a good chance to judge but I am not as sleepy as when taking oral baclofen and I can't take other meds cause they make my bp bottom out. It doesn't stick out in my case when it was in my abdomen but I notice it a little since it's in my hipa area. I think it depends on how much yo weigh. I am also really sensitive to dosage changes, so they have had to up the dose slowly and then lower it as needed. I need some spacitity to walk. I am used to it since I had Cerebral palsy before the stroke. I also had a strange reaction when I had my last refill. You will see it under the post, possible another stroke. But I am I think am the exception to the rule.... ging to another neurosurgeon to have a second opinion. There is a website/discussion board for people with baclofen pumps. http://www.apparelyzed.com/forums/index.php?showforum=28. You can find alot of answers there. If you have any other questions, don't hesitate to ask. Lori :Clap-Hands: Link to comment Share on other sites More sharing options...
tom71 Posted April 28, 2006 Author Share Posted April 28, 2006 Lori, Thanks for the reply and the website, I've joined there and after reading some of the post I'm starting to wonder is getting the pump a good idea or not God Bless, Tom Link to comment Share on other sites More sharing options...
angb Posted April 28, 2006 Share Posted April 28, 2006 Tom, From what I know...the baclophen pump is more for generalized spasticity (i.e. cerebral palsy). I assume your spasticity is localized to your affected arm/hand and leg/foot. I'm not so sure the pump is what you want. I've had pretty good results with Botox injections to the spastic muscles in my forearm/hand. That might be something to look into. Let me know what you think. angb Link to comment Share on other sites More sharing options...
tom71 Posted April 28, 2006 Author Share Posted April 28, 2006 Angie, Up until this past year I was having good results with botox also, but the Doctor I was using for it moved to North Carolina to take the head positon of the department of neurology at Wake Forest University, Since she left I started seeing a new Dr, where I'm not seeing the results I was, and he recommended trying the baclophen pump. Tom Link to comment Share on other sites More sharing options...
angb Posted April 29, 2006 Share Posted April 29, 2006 Tom, My Physiatrist and I had talked about the Baclophen pump as well, but he suggested going another route since the pump is used for more overall spasticity. Good luck with whatever you decide to do! angb Link to comment Share on other sites More sharing options...
Terry Shippy Posted May 5, 2006 Share Posted May 5, 2006 I am going in for an injection trial within the next couple of weeks. I have general spasticity effecting 60% of my body. The oral meds have never worked. I figured my spasaticity is too general for botox. Terry Link to comment Share on other sites More sharing options...
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