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Baclofen Pump

PostPosted: Sun Apr 12, 2009 7:03 am
by katndog
I've had multiple recommendations to undergo a baclofen pump trial and if it's successful to have a pump implanted including one from Johns Hopkins. My spasticity is not controlled well with oral meds.

I can have the trial done locally but I'll have to go out of state to have the pump implanted because I need the catheter tip higher in the intrathecal space than anyone in this area is willing to place the tip. I've been told by a leading neurologist here that a neurosurgeon in Indiana is capable of doing what I need.

Has anyone undergone the trial with or without success? Has anyone had a pump implanted? Are you willing to share your experience?

I'm struggling with this decision after researching the pumps and possible side effects. Plus it means your signing on for periodic replacement of the pump over your lifetime. But it sure would be nice to have relief from the spasticity.

Thanks for any info you can offer!

Re: Baclofen Pump

PostPosted: Sun Apr 12, 2009 9:49 am
by Sew
Hi there,

An idea here would be to also post this question to the TMIC list. I know there are a few people on there who have had the pump for a while. You could get a few more opinions there as well since I don't think all those people ocme to this site to give advice anymore. A lot of them have had TM for a long time so go the 'chat' route now.

Heather in Calgary

Re: Baclofen Pump

PostPosted: Mon Apr 13, 2009 4:23 am
by Lynne
I have had my pump in for a couple of years now. Actually am going to get it refilled today. The main advantage of having the pump for me is being able to get the same level of spasm control as before with less brain fog caused by the baclofen.

The doctor who fills the pump for me tried to adjust it to where it controled spasms better, but at higher doses I am unable to empty my bladder so had it turned back down.

For be the biggest draw back has been the price. Every couple of months when I get it refilled it cost me almost $400 in co-pays. Between that and the hour and half trip to get it done I'm really not sure I will have a new one inserted when the time comes. May just have this one removed and go back on oral Baclofen.

My trial went great, just wish I could get the same amount of relief every day that I did then.

Lynne

Re: Baclofen Pump

PostPosted: Thu May 07, 2009 8:12 pm
by LizzyB5280
I had my ITB trial back in October, and just had a baclofen pump implanted on February 19 of this year. Prior to my surgery, I was taking 30mg of oral baclofen four times a day just to get by. So far it has been great. I receive 175mcg a day, with a slightly higher hourly rate at night than during the day, as my spasms were most bothersome at night. It is so nice not to live by the clock anymore, and not always have to worry if we were going to be out for the day that I remembered to bring my meds with me. My legs aren't as tight, and I'm actually sitting straighter, as my back was starting to lean to the right side (not scoliosis, just muscular tension).

So far, I really haven't had many problems with it. I try not to twist and bend excessively, and have had to slightly alter our positions when my husband and I are intimate, but those are about the only times I'm really aware of it anymore, other than days where I'm picking my 18 month old daughter up a lot. I have noticed that my feet/ankles swell quite a bit now, but as I suspected my doctor said this is normal, as the spasticity had actually been helping my circulation. Hopefully that will adjust over time.

I would absolutely encourage you to at least go have the trial done, and see how your body responds.

Re: Baclofen Pump

PostPosted: Wed May 13, 2009 3:12 am
by Leebo
Hello from Indianapolis, In.

I just had my pump trial on 5/4/09. The trial went well. My main concern was that I lost some of the movement and strength that I had been gaining. The doctors informed me that the test is done with a high amount of baclofen in ensure the best results. Once the pump is implanted, they regulate the dosaage per hour to controll the spacity while giving me the ability to increase the underlying strength of the of the muscles.

I am moving forward with scheduling my pump. Seams to be the best direction for me after consulting with the all of the doctors that are playing this game with me.

I also recommend you take the test to see how you react to it and consult with the doc's for the proceedure and life with pump to see if it will work for you.

Leebo