I'm beginning to think oral baclofen

[-Andrea-]

is a HOAX. It does NOTHING for me. I saw some anesthesiologists yesterday at UM/Jackson's Pain Relief Center and they think the pump would probably be best for me. They want to admit to the hospital for several days to do the spinal tap http://sci.rutgers.edu/forum/images/smilies/mad.gif and make sure I don't die while being administered the medication. It all sounds awful, but the pulling is bad and I don't want it to become worse. They say they will use the pediatric pump, which is smaller.

I'm very frightened, esp. of the spinal tap.

Keep me away from the wisdom that does not cry, the philosophy which does not laugh and the greatness which does not bow before children -- Kahlil Gibran

[marmalady]

Have you asked the docs how many pump insertions they've done? When my son got his, we went in to 'same day surgery', the neurosurgeon did the test dose spinal tap, we stayed in same day surgery for the rest of the day, and went home that same day; why do your docs want to admit you? The actual surgery was done in the morning and by noon Matt was in a room on the neurosurgery floor; he stayed overnight (and I stayed with him - I just don't trust anyone!), and then after rounds by the surgeon the next a.m., we came home. Matt spent a couple of days in bed - he actually wanted to get up the next day, but we gently told him that if he had feeling in the area of the incision, he'd be begging for pain meds!

Have you asked all the questions, made sure you'll get EXCELLENT followup care for the pump, re refilling the pump, taking care of any problems that might come up, etc.? Matt's doc set him up with an excellent home nursing service that specializes in pump care, and they're on call 24/7. It's been so reassuring to us to know that they're available when we need them.

PS - Just reread your post re the pediatric pump - have they told you that you'll need pump refills more often because of the size?

If you have any other questions re the actual procedure, or followup, please ask. Good Luck!

_____________
Tough times don't last - tough people do.

[-Andrea-]

Hi Marmalady ~ they said they want to keep me 2 or so days so they can adjust my dose properly and see how much I need and how my body tolerates it. After I finish this procedure, it's on to the neurosurgeon who will install the pump. How long was your son's recovery? I honestly do not have the time but my leg is becoming more and more bothersome and is about 1/2-1 inch SHORTER than the left before someone tugs it down.

Good question about the pediatric pump and how often it will need to be filled. I'll have to ask.

Thank you for your response!

Keep me away from the wisdom that does not cry, the philosophy which does not laugh and the greatness which does not bow before children -- Kahlil Gibran

[marmalady]

Hi, Andrea - Hmmm, I don't know about adjusting the dose pre-surgery; when Matt when in for his test, they initially injected 50 mcg. which I believe is the lowest dose. Also, from my understanding of how the pump works, the drug is released at intervals; so the pump dosage may be different than the actual test dosage. They told us pretest that if that didn't show results, then we would come back for another test at a higher level. The 50 mcg. pre-surgery dose worked great for him, and that's what they set the pump at when the surgery was performed.

Matt was already on oral Baclofen, so after the surgery we worked with his SCI doc and the nurses who do the dosing changes to simultaneously cut him back on the oral Baclofen while increasing the pump dosage. Maybe because you haven't been on oral Baclofen, the procedure is a little different.

I really would ask if they could do the test dose on a same day surgery basis - the hassles of being in the hospital for even a couple of days with perhaps unskilled SCI nursing care, may not be worth it. Here are the names of the neurosurgeon who performed Matt's surgery - he's one of the best on the East Coast, as well as his nurse practitioner's # (you'd probably get a better response from her!), if you want to call and ask them questions about their protocol, or have your docs call them. They're at the University of Medicine and Dentistry New Jersey.

Allen Maniker, M.D. - 973-972-2908
Peg Black - 973-972-1829

Again, please, please be sure you will have adequate followup for changing pump dosages and problem solving. I have heard horror stories from people who either had the pump installed by inexperienced surgeons, or had inadquate follow up care.

Good Luck again!

_____________
Tough times don't last - tough people do.

[-Andrea-]

Thank you, thank you!
I have the highest confidence in all the physicians I have encountered at UM's School of Medicine. I never, ever get the runaround w/secretaries, etc and my Dr's have all given me their cell and pager numbers.
The neurosurgeons are also well-versed in SCI injuries, but I still don't know who my neurosurgeon will be. Whomever it is, I will be sure to question their past experiences w/the pumps and of course, I will ask the anesthesiologists for their opinions.

One more question...did oral baclofen work for your son? If not, did the pump work? I'm afraid that since I have no luck w/the oral baclofen the pump won't work either http://sci.rutgers.edu/forum/images/smilies/frown.gif Though, I'm told that isn't usually the case.

Could you please ask your son for me if the spinal tap hurt a lot? I'm a needle-phobe and that really bothers me (the thought of a needle being punctured into my spine :cringe:

http://sci.rutgers.edu/forum/images/smilies/smile.gif Andrea

Keep me away from the wisdom that does not cry, the philosophy which does not laugh and the greatness which does not bow before children -- Kahlil Gibran

[cheesecake]

Andrea,
I am assuming that you are having a Medtronics pump put in. Medtronics has a VERY specific protocal regarding the pre-pump test as well as length of hospitalization. You can get some excellent information by visiting their website at www.medtronics.com (http://www.medtronics.com). By calling customer support at Medtronics, they can advise you as to wether or not the surgeon is familiar with their protocal and on their list of doctors.

I have assisted individuals who have had the "quickie" pre-op trial and then they encountered complications post-op. The routine you are being presented with is the most common approach. You will find the peope at medtronics of tremendous help. They have some invaluable patient information that you may want sent to you.

I ditto the concern about being sure you have a doc prepared for dosing issues. Easy access is a key.

Good luck and keep us posted.