2 replies to this topic

[bonniejean]

Our story: I am a volunteer caregiver to Bill. He and his wife Cheryl are our close friends. Cheryl is the bread winner and works long hours. Bill has never been given a definitive answer as to the cause of his paralysis. He has been to Mayo Clinic, Vanderbilt University teaching hospital in Nashville, TN. also, a couple other places. Still, no diagnosis. However, he does have a non-malignant tumor on the brain stem. It would certainly seem that this is the problem. Because of the location of the tumor, surgery is not an option. Bill has been wheel chair bound for a little over 10 years. Symptoms started getting much worse this past May. Up to that point Bill was able to stand to urinate and was able to transfer to the commode and stand momentarily, pivot and get back into the chair. He can no longer get off the commode and back into his chair. He had the baclofen trial last Monday. The results were: he could move his left hand and fingers and clench his fingers around mine and Cheryl's fingers. We could bend his legs at the knees and he was greatly relaxed. Infact, he left the hospital in a euphoric mood. The dosage of baclofen was huge and Bill was unable to stand to urinate for that evening and the next day. He was terrified, even though we knew that could happen. He is back to being able to stand momentarily but can't transfer from the chair to the commode and back. Bill is to have the pump implant in about a week. Cheryl and I have done a bunch of research and I have read numerous posts on this site. Any encouragement would be greatly appreciated. I don't think Bill or Cheryl are prepared for what will happen post pump implantation. I have been sharing as much as I can find out and trying to help Bill to understand that it will take a while for the Doctors to figure out just how much medication will suit him the best. He feels that he must try the pump due to being unable to transfer. At this point there is not sufficient money to pay for in home care while Cheryl works. We do so hope that the pump will buy a little more time before they have to do something else.

BILL'S QUESTION: "What if I get too much baclofen and my legs are like jelly and I can't stand to urinate or get onto the commode, how will I go to the bathroom?" Bill is so afraid of this even though I tell him that Cheryl and I will work it out. Also, do most people start with small doses and work up. Bill's fear is that the first dose will be far too much. Any ideas or words of encouragement would be so welcome.
Thanks, bonniejean

[Lillehammer94]

The initial dose that the pump is set at is usually close to the trial dose yet it depends on how the patient reacted to that trial dose. It can be set higher or lower if needed. Increases are given very slowly at the rate of around 10% over an extended period of time until a theraputic level is reached. Bill may still have problems with mobility to urinate right after the pump is placed because he will have just had surgery but things should then get better from there. You are a wonderful friend and smart to do the research ahead of time!

Good Luck!
Gretta

[davebahm]

Bonniejean,
Please tell Bill the most important thing is to be patient after the surgery because it's not an overnight fix. I'm eight weeks into this and seeing slow progress, but progress none the less. Gretta has been a big encouragement (thanks, Gretta!). They will start Bill off with a low dose (mine was 100 micrograms, then 115, then 100 again and now 108). Though my legs have seen big improvement in flexibility, due to the pump and my wife stretching me every day, my back is still a problem in that I still have a hard time sitting up straight (the P.T.s think it's due to stomach and back muscles continuing to fight each other). I hoped the surgery would help fix that, but so far no. My co-workers have noticed I stand taller and walk a little straighter when I slow down, so that's good.

The rep from Medtronics denied any patients having trouble with this, but I had bladder control problems after surgery. This seems to be back to normal now, but unfortunately I continue to have sexual problems. I won't get graphic, but Jen and I have had to change how we do things. It works, but it's not as fulfilling as before surgery.

I saw the videos Medtronics produced that showed some remarkable results. These were probably best-case-scenarios. Jen hoped I would be able to trade my walker for canes, but I don' think that will happen. She does have a goal of stretching me so that I can sit cross-legged/Indian style like when I was 6 years old (33 years ago), and it looks like this may be a possibility eventually!

Dave