Hello: I am the proud mother of Joseph. A 7 year old quadriplegic CP with severe brain damage ,hyperspasticity, and suffering from a varying number of seizures amongst the many other assorted dissorders of the body and mind. To put it simply, my boy is in great pain. We are currently considering the baclofen pump but are a little weary reading so many stories about withdrawls, multiple sugeries, overdoses, and pump adjustment disasters. Joseph and I are running out of options; ( at least of the options we are aware of). We would appreciate any and all personal experiences.
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Joeysfanclub
Started by
Joeysfanclub
, Feb 02 2006 04:36 AM
3 replies to this topic
Top#2 *josiejose*
*josiejose*
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Posted 19 February 2006 - 01:37 PM
Hey there joey's mom,
I wish I could be there to get you a cup of tea. you sound like you could really use one.
Let me just say that I have had my Medtronic synchromed II pump now for 18 months and it has been so great. I have actually never heard of a real disaster so far, but I'm sure that no implant experience is the same.
My pump was originally trialed because I have severe neuropathic pain in my legs. I'm a functional t10 paraplegic with something called arachnoiditis, an inflammation in one of the meninges that surrounds the spinal cord, due to a bunch of spinal cord surgeries I had growing up.
Anyway, the only problem I ran into was during the implant surgery itself. because the scarring is so bad inside my subarachnoid space (the space between the spinal cord and the meninges where the cerebrospinal fluid is) in the area that is affected by the arachnoiditis, they couldn't get the catheter for the pump into the right place. They ended up implanting it much further up (T6 instead of T10) in order to thread it down caudally toward the damaged area without getting caught up in it.
I have spasticity as well, so about 6 months after I had my implant, they also put baclofen in it. it really helped. It's a long process of adjustments to get the dosage right, but I can guarantee to you that I never had this good spasticity or pain control before I got the pump. Beforehand, I was out of school, I couldn't function day to day and I didn't eat or sleep a lot. I'm 26, and used to a really full and active life so that was a big deal for me. After the surgery, I was able to go back to uni to finish my degree! The one thing you might have to watch for with your son is that if he is non-verbal, he might not be able to tell you if the pump is turned up too high or something - I had one episode with the pump where they turned the flow rate up just a little too much at once, and it made me quite sick - not seriously, but I find that hydromorphone, one of the drugs in my pump, makes me nauseus. It was easy to fix - they just stopped the pump for a bit to let me equilibrate, and then turned it back on at a slightly lower level.
I know my story is so different than your son's, but I totally remember being in your shoes, having to decide what to do when you are so desperate for any kind of help you are worried that you might jump at the wrong choice! My choices were the pump, or further spinal cord surgery - which was what had gotten me into this mess in the first place. I'm glad I chose the pump - and no, medtronic didn't pay me to say that -
I wish I could be there to get you a cup of tea. you sound like you could really use one.
Let me just say that I have had my Medtronic synchromed II pump now for 18 months and it has been so great. I have actually never heard of a real disaster so far, but I'm sure that no implant experience is the same.
My pump was originally trialed because I have severe neuropathic pain in my legs. I'm a functional t10 paraplegic with something called arachnoiditis, an inflammation in one of the meninges that surrounds the spinal cord, due to a bunch of spinal cord surgeries I had growing up.
Anyway, the only problem I ran into was during the implant surgery itself. because the scarring is so bad inside my subarachnoid space (the space between the spinal cord and the meninges where the cerebrospinal fluid is) in the area that is affected by the arachnoiditis, they couldn't get the catheter for the pump into the right place. They ended up implanting it much further up (T6 instead of T10) in order to thread it down caudally toward the damaged area without getting caught up in it.
I have spasticity as well, so about 6 months after I had my implant, they also put baclofen in it. it really helped. It's a long process of adjustments to get the dosage right, but I can guarantee to you that I never had this good spasticity or pain control before I got the pump. Beforehand, I was out of school, I couldn't function day to day and I didn't eat or sleep a lot. I'm 26, and used to a really full and active life so that was a big deal for me. After the surgery, I was able to go back to uni to finish my degree! The one thing you might have to watch for with your son is that if he is non-verbal, he might not be able to tell you if the pump is turned up too high or something - I had one episode with the pump where they turned the flow rate up just a little too much at once, and it made me quite sick - not seriously, but I find that hydromorphone, one of the drugs in my pump, makes me nauseus. It was easy to fix - they just stopped the pump for a bit to let me equilibrate, and then turned it back on at a slightly lower level.
I know my story is so different than your son's, but I totally remember being in your shoes, having to decide what to do when you are so desperate for any kind of help you are worried that you might jump at the wrong choice! My choices were the pump, or further spinal cord surgery - which was what had gotten me into this mess in the first place. I'm glad I chose the pump - and no, medtronic didn't pay me to say that -
#3 *Bob*
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Posted 22 February 2006 - 01:25 AM
Joey's Mum
Had my 2nd Baclofen pump since Aug 2004. My 1st went in in April '04 but unfortunately the site became infected & antibiotics didnt help. Apart from that setback the pump has reduced spacticity & pain to the point where I mobilize primarily on elbow crutches (I am an incomplete quad) & can sleep soundly
Had my 2nd Baclofen pump since Aug 2004. My 1st went in in April '04 but unfortunately the site became infected & antibiotics didnt help. Apart from that setback the pump has reduced spacticity & pain to the point where I mobilize primarily on elbow crutches (I am an incomplete quad) & can sleep soundly
#4
ambulate15
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Posted 27 February 2006 - 03:15 PM
My son had multiple diagnoses when we put a pump in him when he was 7 years 9 months old. It was the best thing we ever did for him. He was a spastic quad and in a wheelchair most of the day. He used his spastic tone to stand in his stander so that was a consideration in the placement of the catheter. His catheter was placed really high to reduce tone in his shoulders and upper torso so that PT could intervene more effectively, plus we were striving to reduce oncoming scoliosis, while keeping some needed tone in his legs for standing. After the pump his whole demeaner improved. He was non verbal and used augmentative communication to talk. He accessed his AAC by hitting a head switch located at the side of his head. After the pump was placed he got an extra bonus - He gained more control over his head to functionally hit his switch more reliably to communicate more effectively. I know your situation is a lot different but since my son was of similar age I hoped this might help.
Good luck, Gigi Taylor
You can read more about my son at www.aacinstitute.org and hit Hall of Honor, then hit Will Taylor ; more Articles are written about Will in The Religion and Spirituality Division Quarterly Spring 2001 on page 10-13.
http://www.aamr.org/.../spring2001.pdf.
Other great websites and articles to read about the pump and how it might help are by Leland Albright MD. I would recommend them.
http://www.neurosurg...y/albright.html
(this article demonstrates the reduction of surgeries after the pump... very
helpful to me ) http://www.aans.org/...jan98/4-1-3.asp
Good luck, Gigi Taylor
You can read more about my son at www.aacinstitute.org and hit Hall of Honor, then hit Will Taylor ; more Articles are written about Will in The Religion and Spirituality Division Quarterly Spring 2001 on page 10-13.
http://www.aamr.org/.../spring2001.pdf.
Other great websites and articles to read about the pump and how it might help are by Leland Albright MD. I would recommend them.
http://www.neurosurg...y/albright.html
(this article demonstrates the reduction of surgeries after the pump... very
helpful to me ) http://www.aans.org/...jan98/4-1-3.asp
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