Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Go to the Medtronics website and order your free info packet. Then go to the Medline medical study library and search under " intrathecal baclofen " . My summary of the studies is: the pump is wonderful for people with spasticity. 20-25% of patients with the pump experience some complication: spinal leak, kinked or broken catheter, granuloma forms over catheter tip, infection around pump and very rarely ruptured pump diaphragm. Bottom line - 80-85% of patients asked if they would do it again said yes. I had mine implanted Nov. 30 I'm not dancing yet unfortunately. The process of getting the pump has activated more neuro problems none related to the pump. So we're back to square one on the age old question " What does Eva have? " I'd do it again though. You must make decisions on the information you have up to the point of action. And who knows this new information might just lead to the silver bullet to free my body of disease. Eva > > My neuro brought up the possibility of getting a PUMP put in but I > have heard so many PROS and CONS on this I hesitate to think about > it,Would like to here some of the experiences some of you have had, I > know there have been postings in the past but would like to hear from > any of you fellow PLSers. THX- JOHN B. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 > > > > My neuro brought up the possibility of getting a PUMP put in but I > > have heard so many PROS and CONS on this I hesitate to think about > > it,Would like to here some of the experiences some of you have had, I > > know there have been postings in the past but would like to hear from > > any of you fellow PLSers. THX- JOHN B. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 > > > > My neuro brought up the possibility of getting a PUMP put in but I > > have heard so many PROS and CONS on this I hesitate to think about > > it,Would like to here some of the experiences some of you have had, I > > know there have been postings in the past but would like to hear from > > any of you fellow PLSers. THX- JOHN B. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 > > > > My neuro brought up the possibility of getting a PUMP put in but I > > have heard so many PROS and CONS on this I hesitate to think about > > it,Would like to here some of the experiences some of you have had, I > > know there have been postings in the past but would like to hear from > > any of you fellow PLSers. THX- JOHN B. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Hi , I'm one of the very blessed people. I have had my pump since 1998, in fact I'm on my 2nd pump, had to have the 1st one replaced in 2003. I haven't had any problems with my pump, it did take a few extra trips to the pump Dr. to get the dosage right when I first got the pump and then when I had the pump replaced as well. I think it is really helpful if you live fairly close to the facility where you will have your pump refilled and dosage adjusted so it isn't a hassle to go in once a week for a while til you get the right dosage. I consider the pump a big blessing, I was on 80 to 120 mgs of oral baclofen daily when I got the pump. I went through the increasing the dosage of oral baclofen and lowering the dosage, trying zanaflex etc. I had been on oral baclofen since 1980 so I'd been on oral baclofen for 18 years when I got my pump and the dosage had been increased over the years. I think a lot of the success of the pump depends upon what you expect from the pump. I have HSP was 7 yrs old when I was diagnosed, I have a strong family history of HSP. I was already in a wheelchair when I got my pump, it was funny I think but the first time I saw the Dr. about the pump he said, " I want you to know the pump isn't going to make you walk again " I chuckled and said I didn't expect it to and didn't think anything would. For me with the pump, it is several pills I don't have to take a day and if I'm having an especially bad day I don't have to try & take a little more baclofen to see if it will help. My dosage is actually quite low and I am on a higher dosage at night while I'm sleeping than I am during the day. I work full time, drive myself to work every day and get my wheelchair in & out of my car by myself. Getting in & out of my car and how much I have to fight with my legs getting them in the car is one of the gauges I use to know if I need my dosage increased or not. I have a wonderful pump Dr and he lets me make the decisions about when to increase the dosage & how much. Unfortunately not everyone has the same success story I have with the pump and I understand the pump isn't for everyone but for me it has been a Godsend. Good luck to you in whatever you decide to do. Best to all, Donna HSP Ca jben63122 bchute1@...> wrote: My neuro brought up the possibility of getting a PUMP put in but I have heard so many PROS and CONS on this I hesitate to think about it,Would like to here some of the experiences some of you have had, I know there have been postings in the past but would like to hear from any of you fellow PLSers. THX- JOHN B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 > My neuro brought up the possibility of getting a PUMP put in but I > have heard so many PROS and CONS on this I hesitate to think about > it,Would like to here some of the experiences some of you have had, I > know there have been postings in the past but would like to hear from > any of you fellow PLSers. THX- JOHN B. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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