Baclofen Pump...Granuloma's?

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purplerosejmk
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/20/2010 2:41 PM (GMT -7)   
I have had a baclofen pump, actually on my second, for nine years.  Has anyone ever experoenced or heard of someone who developed a granuloma with only Baclofen in their pump?  I know it's most common with Morphine. 
 
I have Torsion Dystonia and secondary MS.  I take oral pain med's as my doctor will not mix anything with my Baclofen.  Although the pump helps tremendously with the spasticity, I have irreversible muscle damage which causes chronic pain.
 
I look forward to any replies on this subject.
 
Thanks!
Jan


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 2/21/2010 12:07 AM (GMT -7)   
Hi Jan!!

And welcome to our CP family. We do have quite a few people who are on pain pumps. Stella, one of our moderators, is not only on a pain pump but is a wealth of knowledge. Also other members have a great deal to share on this topic.

While we're waiting for those others to come back online you might try searching for older posts on the topic. Also you might find helpful links in the Chronic Pain 101 subject at the top of this list. I'll email a couple of people who might have some answers for you.

Warm hugs,
Chutz
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 2/21/2010 8:07 AM (GMT -7)   
Hi PurpleRose,
 
I too would like to welcome you to Healing Wells's chronic pain forum. I am so sorry to read what you have going on with you and I am sure you are really disappointed with the whole mess. I am so sorry that this has happened.
 
I have read about granulomas developing with Baclofen and yes it is very rare but it has happened in the past. The higher percentage of granulomas developing are as you stated with Morphine, Dilaudid  or a drug cocktail (combination) in what is considered a high dosage for the pump. Everything I have read about the pumps states the lower the dose the better to help keep this from happening.
 
May I ask why you have had to have two pumps put in, in nine years. That seems so close together to have through. I know the drs all downplay the actual surgery itself, but you and I both know better. If it were only that simple.
 
I do hope you will decide to hang out with us here at Healing Well. Do you by chance belong to the group called Pumpsters? I recongnized your name from the new group that is a spin off from Pumpsters. Take care.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


purplerosejmk
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/21/2010 10:10 AM (GMT -7)   

Thanks Chutz for the warm welcome.  I used to moderate a large pump group and now co-own one with a dear friend.  Just seems no one has any personal experience with Baclofen and granulomas.  While I don't wish a granuloma on anyone, I would like to hear if any Baclofen pump users have experienced one.  Thanks agin!

 


Jan


purplerosejmk
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/21/2010 10:23 AM (GMT -7)   


Thank you, also, for the warm welcome.




<FONT color=#800080>I could never get a straight answer about why my catheter was revised also. I told him not to. Two years later I am still investigating. All I was told was that the surgeon could not aspirate the catheter from the pump lead-in nor from my spine. Leads me only down one path, I must have had a granuloma and they won't say anything.


</b> five years. I now co-own a group, not a spin-off of Pumpsters, with a dear friend of mine. Our group is much different. Don't get me wrong, Pumpsters is a great group of folks!

<FONT color=#800080>I certainly will hang out with all of you! Thanks for the reply.

(please follow the forum rules on posting links to other sites)

Post Edited By Moderator (Chutz) : 2/23/2010 10:48:39 PM (GMT-7)


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 2/21/2010 11:47 AM (GMT -7)   
As a result of neurodegeneratice disease, I also suffer from chronic spacticity and secondary chronic pain. My first pain doctor, who implanted my pump, put straight baclofen in it and then my pain meds were Rx'ed orally.  For a variety of reasons I ended up changing pain doctors.  My new doctor has much more experience sith pumps and the first he did was suggested I combine baclofen and morphine in my pump.  It works great, Much better than takking oral pain meds.  Some of these pain doctor are just too conservative with trying new combol

Stella Marie

Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump & neurostimulator.  Extra features: O2 & wheelchair.

 

 


purplerosejmk
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/21/2010 12:02 PM (GMT -7)   
</b> mixing my Baclofen with an opiate. Did a lot of research on it and was finally convinced this was for me. My pump doc does not deal with opiates in pumps. He does only Baclofen. I tried to find a new pump doc, although I love mine, that would be willing to combine both and really utilize this hockey puck in my body. My primary doc's office searched high and low and no one will take me since they did not implant the pump. They even begged one doctor within their group to take me. I've been with my primary for about 15 years and they told this pump doc that. Still didn't persuade him. If I want to travel, I can go about 50 miles away, if not more, to a doctor that will do both. However, that would mean changing my primary and I refuse to do that. So, for now, I'm stuck using oral pain med's.


<FONT>Thank you for the advice!


(Please read the forum rules on posting links to other sites)

Post Edited By Moderator (Chutz) : 2/23/2010 10:49:25 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 2/21/2010 1:18 PM (GMT -7)   
Hi Jan,
 
By chance the pump you replaced was it the one on recall for the gear problem? My pump is on that recall but I elected to leave it alone since it was functioning properly. I really did not feel it was necessary at that time. I had already had six surgeries in three years and I needed a break from the surgery scene.
 
I think I got confused here, lol. Are you thinking you had a granuloma with your first pump and the dr never confirmed it or what? What test did he do?
 
I spoke with Medtronic about the recall several times and the one thing that really irked me if a person elected to have the pump taken out and a new one put in, the unit had to be sent to Medtronic. They would have their team take a look at the pump and determine if the it was defective or not. If it was defective Medtronic would contribute $1,000 towards any out of pocket expense a patient may have. I thought to myself I just wonder how many units they found defective too.  
 
I know that it is a real problem getting another dr to take one of us as a patient. I don't know about you but my dr never bothered to tell me that little bit of info before having the pump put in. I found that out in the fall of 08 when he decided to quit pain mgt and go back into anesthesiology. He did get a dr to take 45 of his pump patients and she is totally awesome. She knows the pumps like the back of her hand and has a lot of experience with pumps and compounding the medications for them. All of us really lucked out getting her, because our dr did not know beans about a pump. None of had any quality of life and we were in terrible shape because of his lack of education and knowledge.
 
All I can say is don't give up your quest for a new dr just keep looking. It is so wrong how controlled we are by having these things, it is really unfair. Take care.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

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