I am also considering having my pump removed but not because I am having any problems with it, just because of the cost of maintaining and getting it filled. Even with health insurance my co-pays and my 20% end up costing me well over $400 every three months when I get it filled. That and having to drive a couple hundred miles to get it done. Lynne
--- On Fri, 7/17/09, Butcher, Bernie (S&FS) <[email protected]> wrote: From: Butcher, Bernie (S&FS) <[email protected]> Subject: RE: [TMIC] Medications To: [email protected], [email protected] Date: Friday, July 17, 2009, 1:30 PM Hi Naomi - please keep me informed, they want to put one in me if trial works BERNARD BUTCHER From: [email protected] [mailto:[email protected]] Sent: Friday, July 17, 2009 12:49 PM To: Butcher, Bernie (S&FS); [email protected] Subject: Re: [TMIC] Medications As you all are contemplating your Baclofen doses or trial, I am waiting for the neurosurgeon to remove my Baclofen pump. I had my pump put in July 2006. Initially the pump worked well for preventing spasms, but I did not know that it would prevent me from standing or walking, because I wasn't getting any physical therapy for a very long time. Once I got the chance to get physical therapy, I wasn't able to stand at all. I was like a limp noodle. No matter how hard they tried, I wasn't able to stand, not in the standing frame nor with a walker. I had the doctor reduce the Baclofen dose in my pump, in small increments. No matter how much he reduced, there was still no change. About six months ago, my pump began to give me problems such as swelling and tenderness to the touch. I spent two visits in the hospital within three months, for the same problem. I was told they couldn't find anything wrong with the pump, but each time they put me on intravenous antibiotics and the swelling went down and tenderness diminished. This led me to believe that there was an infection somewhere. After my pump kept swelling and the neurosurgeon's nurse told me that the pump is a foreign object in your body, and the body is constantly trying to reject it, and some patients pumps were rejected totally outside of the body, I decided to have my pump removed. My oral Baclofen was started up again, and I was weaned off the pump. I then began to have more tone, and am able to stand better. I'm not able to walk yet, but I have some inpatient physical therapy coming up once I get this pump removed. I tried once to have the pump removed but was unsuccessful. They could not get an IV in. They tried from my feet to my exterior Jugular. Once I get over this bladder infection, they will try again. Wish me luck. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Can love help you live longer? Find out now.
