[Phyxius]

Hi, I posted this in the concussion and TBI forum and got no responses. So, I thought I would try here since my doc said that the pumps are sometimes used for MS patients. I had my baclofen trial in Dec and I'm going to the surgeon on the 29th of Jan. If anyone here has had one put in, I would really like to know what it's like to live with one (if it helps spasms, do you feel drugged all the time). I haven't talked to anyone who has had one and really feel like I'm going into the great unknown. Thanks, Bailey

[Lady]

Hi Bailey,
I have not had it done, but I have been to MS meeting groups and seminars explaining this procedure. It was the main presentation that night.

Two of the women in my group had it done. The films were about these women. The before and after. One could not walk do to curled up feet and spasms and pain. The other for bad general spasticity and pain.

It was amazing to see these films. The medication is delivered directly into the spine through the implanted pump (on the side) and tiny tubing to spine. The medication goes directly where you need it and does not pass the stomach to give you that medicated feeling.

The dosage is checked for your amount need and programmed into the pump to deliver that amount.

It can be refilled when necessary by the doctor. He gauges everything and tests and re-tests the amount. The surgery seems easy but of course it still is surgery, but I am sure you will find there is a greater difference than taking the oral Baclofen.

You may need the med tweaked at times to how you feel, but you won't feel drowsy or that drugged feeling at all, not like with the oral med..

At the end of the meeting the girl in my group walked in and we all saw that she was not tripping over her turned spasm/curled feet and she walked normal. She had a smile from ear to ear. Like I said, we were all amazed, on film, and then in person.

The other women was glad she had it done also. She needed Baclofen at a high dosage and this was the answer for her. They only had good things to say about it and were glad they had it done.

I hope this information helps answer your questions. Did the doctor give you pamphlets and talk to you about it? Good luck to you and be well.

[Phyxius]

Lady, thanks for responding first of all. I have been to so many boards trying to get some info on this. My doc didn't give me any pamphlets. He told me about it and I have watched some tube videos of people before and after but no one mentions how they feel. They always talk about how much better they walk or how much better the spasms are. I'm in school, so the not being loopy is very important. They don't think it will get me up and walking, but will end the spasms. I just don't want to take on new problems.
Thanks, Bailey

[DavidT]

I have had mine for almost 2 years. I love it. I couldn't walk, but I had bad spasms. I still can't walk but my spasms are under control. I don't even know I have it. You don't feel drugged at all. I have to get mine adjusted every so often. It's very easy for them to do. I think you would be very happy with it.

[Phyxius]

Originally Posted by DavidT

I have had mine for almost 2 years. I love it. I couldn't walk, but I had bad spasms. I still can't walk but my spasms are under control. I don't even know I have it. You don't feel drugged at all. I have to get mine adjusted every so often. It's very easy for them to do. I think you would be very happy with it.

That's very encouraging to hear. It's the kind of feedback I was looking for. If you go to utube and type in baclofen pump you can see some people's videos of before and after. There are some pretty amazing results with people not being able to walk before and then being able to walk. That wasn't the most likely scenario for me, so I was more concerned with possible side effect. I appreciate you answering that for me.

[lindalulu]

Originally Posted by DavidT

I have had mine for almost 2 years. I love it. I couldn't walk, but I had bad spasms. I still can't walk but my spasms are under control. I don't even know I have it. You don't feel drugged at all. I have to get mine adjusted every so often. It's very easy for them to do. I think you would be very happy with it.

Do you know anyone that has had success with T.B.I.?? My daughter 19, is going for the trial in two weeks, can you still do stem cell if you have a baclofen pump? Thanks, if you do not know, pass this on and maybe I will find someone that has had both. How long did you wait after the trial to have the pump put in? Did you hear negative things about it, or it was not affective scarring you to make a decision right away? Thanks again

[DavidT]

I don't know anyone with T.B.I. who has one. I have read that it helps though. I have also read that having a baclofen pump does not affect having stem cell treatment. I was scheduled for surgery after I passed my test. It was only a few days.

[Phyxius]

Originally Posted by lindalulu

Do you know anyone that has had success with T.B.I.?? My daughter 19, is going for the trial in two weeks, can you still do stem cell if you have a baclofen pump? Thanks, if you do not know, pass this on and maybe I will find someone that has had both. How long did you wait after the trial to have the pump put in? Did you hear negative things about it, or it was not affective scarring you to make a decision right away? Thanks again

I have TBI and that's why they are going to be putting in the pump.
Like I said in the original post, I had the trial on the 2nd of Dec and I have my pre-op appt on Jan. 29th. From what I've read, the pump has no bearing on stem cell treatments. I've seen videos of Donny Winn on youtube, Donny had a severe TBI and what the pump has done for him is nothing short of miraculous. You really should go to youtube and put in his name and watch some of his vids.