It is incredible to me that so many of you are using so much baclofen. I
didn't know how heavily it could be used,
and I feel really blessed that so little of it helped me so much with spasms.
Of course, I don't know how severe
your all's spasms are. Anyway, sure hope you get this taken care of and
will be among the "definitely improving".
Janice
----- Original Message -----
From: L T CHERPESKI
To: [email protected] ; [email protected] ; [email protected]
Sent: Friday, July 17, 2009 10:28 PM
Subject: Re: [TMIC] Medications
Hi Naomi,
You are in my prayers. I can see why your body would see the pump as a
foreign object and naturally want to reject it. So, may you heal quickly from
this bladder infection so the doctor is able to get that pump removed safely.
Looking forward to hearing that you are feeling so much better and are back in
physical therapy. Take care, Naomi, and please keep us posted on how you're
doing.
Linda
----- Original Message -----
From: [email protected]
To: [email protected] ; [email protected]
Sent: Friday, July 17, 2009 10:48 AM
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
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