4 replies to this topic

[DesolateOnPaper]

I have a partitially severed spinal cord and nerve damage. I suffer from spasms and have been on oral baclofen for close to twenty years. I decided to put my faith in the baclofen pump because until recent years have had relief from oral medication. They attempted the surgery last week, unfortunately I have too much scar tissue at the base of my spine for them to advance the line into my spinal cord. My doctor at the Cleveland Clinic believes he can still do the surgery, just using a different technique. He believes he can open me at about T7 and insert the line into my spinal cord there. I was wondering if anyone has had similar problems with the surgery or has done a proceadure similar to mine? Is there adequet success in doing the surgery this way? I am young and facing the medical world on my own and very overwhelmed. Any advice at all would be well appreciated.

[DesolateOnPaper]

you people are fake. lets all laugh away our disabilities! although, i pose a real question and get liittle notice. i find this discerning. 45 views, not a single response, completely lame considering the purpose of this website and of a message board/forum.

[purple_faeries]

Hi

I'm sorry you haven't had much luck in getting the answers you need, unfortunately I can't help with your situation as I only take oral baclofen, a question for you though, I am on 60mg a day, 30mg am and 30mg pm (though my GP prescribed 20mg 3 times a day and i altered it), it is definitely helping my spasms but they are still really bad but he says that I can't go on more than 60mg a day. When you were on oral baclofen what was your dose? I'm sure I've seen people on here that have said they are on more than 60mg a day I just can't quite remember lol.

I do really hope that you can get something sorted with your operation and spasms, I am sure that once they get the pump in you it'll really help, I'm sorry I can't be of more use

Hannah

[Apparelyzed]

Well I missed your post because it wasn't posted in the correct area, I have now corrected this.

I think the reason you haven't had any replies is because no one has been in your situation.

There's no much point loads of people posting "I don't know".

The important issue is where the tip of the catheter is placed in the spinal canal, so if he feels he can insert it at T7, then ask him why it's usually inserted at the lumbar level, and ask if there would be any issues in placing it at T7.

Regards

Simon.

[Vicki]

DesolateOnPaper, on Feb 28 2009, 05:57 PM, said:

I have a partitially severed spinal cord and nerve damage. I suffer from spasms and have been on oral baclofen for close to twenty years. I decided to put my faith in the baclofen pump because until recent years have had relief from oral medication. They attempted the surgery last week, unfortunately I have too much scar tissue at the base of my spine for them to advance the line into my spinal cord. My doctor at the Cleveland Clinic believes he can still do the surgery, just using a different technique. He believes he can open me at about T7 and insert the line into my spinal cord there. I was wondering if anyone has had similar problems with the surgery or has done a proceadure similar to mine? Is there adequet success in doing the surgery this way? I am young and facing the medical world on my own and very overwhelmed. Any advice at all would be well appreciated.

Settle down. You sound very frustrated and justifiably so. No point in taking it out in this forum.

I am a candidate for a new pump as a result of having a faulty pump inserted in the first place in 2004. after 27 years of severe spasm, the baclofen pump was the answer to all my prayers. Like anything though, the pump can come with complications (e.g. if it fails and another side-effect to me is weight gain).

The pump I have inserted is between C6/C7 vertebrae -- well the catheter tube running from the pump to my spine anyway.

Is it possible to discuss with your doctors about having the catheter/tube inserted above the scar tissue? To be perfectly honest, I thought this was as low as they went (i.e. they've been the doctors)?

However as an Australian, things may be different here.

I am happy for you to send me an e-mail but leave that to Apparelyzed as he is the person who convenes this forum and we'll forward you on my e-mail address if it is okay by him.

Keep your chin up. I know it seems daunting but sometimes people like myself -- and yourself -- have to be the trailblazers (to use a Star Trek analogy "to boldly go where no man has gone before")and inform everybody else behind us or somebody new as to what is facing them as a daunting prospect in the future.

Cheerio and look after yourself
Vicki