the pros and cons to a Baclofen pump

[popsie]

If anyone is considering having a Baclofen pump implanted, I am on my second pump after 6 years on the first one.  I can tell you all my experiences - the good and the bad and the ugly - which might help you make the best decision decision

[Marina]

I think your experiences might be of interest to a number of people who view the forum Would you like to post about them here?

[ptlike]

Hi popsie

Like you I've have pump, maybe 7 years in my case.

I was told originally it may help me to walk. 

In my case this was not the case as spasticity helps me stand. 

Would you have the pump again given the choice? I personally don't know what I would choose to do.

 

Best wishes

Peter

Edited 29 Sep 2018, 3:27 am by ptlike

[popsie]

Hi Peter

 

Yes I agree.  Perhaps it is something you choose to do only if you are desperate.  If you have had a pump for 7 years I presume you are either about to decide or have decided to have another pump?  Or not?

 

In 2007 I was having so much pain from spasticity together with intensely sensitive skin over 3/4 of my body that it was impossible to sleep.  Baclofen was/is the only drug the doctors have for spasticity but I could not tolerate oral Baclofen (am very allergic to it and most drugs) so Neuros said they could not help me. The Dr at the pain clinic explained that the big advantage to the pump is you only need 1/300 of the dose as it is going direct into the spine and legs below the waist.  

 

So the first pump was a great success as with only a small dose of 21 mcg per 24 hours I had no more spasms or  skin pain and I was able to lie peacefully in bed - bliss.  However I then discovered that I had a lot of side effects to Baclofen even though the dose was so small - shocking insomnia, and I was so shaky I needed to use a walker, and even shook when I was sitting.  I also completely lost my sense of taste and smell. The worst thing for me was constantly needing to go to hospital (about every 2 years) because I reacted to all drugs/dye/ they needed to use to correct problems mainly in the tube leading from pump into spine.  My pump always worked well but I reacted to and rejected the plastic tubing and reacted to the Baclofen. 

 

When I was getting ready to have the second pump I started to have really intense reactions to Baclofen and had to titrate it down to nothing, then saline, then turned it off for a year while I tried to find something else which could help spasticity/pain.  Nothing helped.      

So after a year to detox to Baclofen I had the 2nd pump put in.  2nd year I had Lymph-edema with both legs swollen from thigh down could barely walk after 4 months fixed lymph-edema but one leg froze up completely so back into hospital, tube perished and Baclofen had being going into abdominal cavity, probably for months, not where it was needed.  After operation I had a lot of pain skin/deep in/burning down legs and across buttocks.  Baclofen used to work on these but Sativex worked wonders no more pain, and gives me bend in the back and legs but have to have both pump and Sativex, when I titrated the pump down spasticity was intolerable. 

 

I am hoping to get Sativex to control spasticity.  I will let you know when I achieve that!  

 

Sorry such a long post.  Wishing you all the best.  Trish    

Edited 29 Sep 2018, 10:09 am by Marina
Paragraph spacing for readability :-)

[ptlike]

Hi Trish

I've just had my pump replaced and some of the catheter as had been leaking. 

Wow you've had some problems I hope all are getting resolved.

I find that the setting of the dose in the pump is a compromise between spasticity and mobility as spasticity allows me to stand.

For me the biggest disadvantage to the pump is having to go to hospital to get it filled every 3-6 months and adjusted for dose. 

People at my clinic are mostly very happy with their pump.

Best wishes

Peter

 

 

[popsie]

Yes Peter,  you're absolutely right  its essential to get the titration right, as some spasticity is essential I just have too much which is one reason that I am hoping to move to Sativex.  I also get my pump filled every 3 months because I react to the Baclofen as it gets old.  Fortunately the hospital is only half an hour away and they are very obliging - I recently titrated down to 12 mcg (because I hoped Sativex would be controlling spasticity, but at the moment it is not doing enough so I titrated Baclofen up again to 18 mcg.  Its really good that people are happy with their pump as it means that it is helping them.  Interestingly the Pain Clinic here is very quiet and the nurses say less people are using pumps, it might be because I think they prefer to use Baclofen here, the Americans put all sorts of drugs in theirs, though then they seem to get more granulomas.

Be well

Trish

[ptlike]

Hi Trish

Unfortunately all medication seems to have side effects, life I guess. I forgot to mention having a pump now restricts me from industrial electric welding and anything that causes severe vibration. I have managed to avoid both upto now haha.

Well I hope they can solve your problems.

Best wishes

Peter