15 replies to this topic

[dexter]

Well, recently I had a Baclofen pump put into my body. It has worked tremendously well. I'm so excited to have it. The spasms I had before were so tremendous I was taking more than the maximum dose of baclofen and more than the maximum dose of tizanadine. It got so bad I was going Against Doctor's Orders and it still wasn't getting rid of my them. Now that I have the Baclofen pump life is much better.

BUT..... I am now experiencing massive amounts of pain that I have not experienced before. I was in the hospital for an extra seven days trying to figure out what it was and how to treat it. The doctors were unsuccessful and they were all scratching their heads. So I'm now home and having rough times. I am glad that I had it put in, I just want to figure out what to do with my new problem.

Has anybody else had a baclofen pump put in or heard of somebody who has? Have they experienced the same problem? Any ideas on what to do?

Dexter

Edited by dexter, 13 September 2009 - 03:04 AM.

[dexter]

Nothing huh?

Oh well.

[MD soccer]

dexter, on Sep 12 2009, 02:58 PM, said:

Well, recently I had a Baclofen pump put into my body. It has worked tremendously well. I'm so excited to have it. The spasms I had before were so tremendous I was taking more than the maximum dose of baclofen and more than the maximum dose of tizanadine. It got so bad I was going Against Doctor's Orders and it still wasn't getting rid of my them. Now that I have the Baclofen pump life is much better.

BUT..... I am now experiencing massive amounts of pain that I have not experienced before. I was in the hospital for an extra seven days trying to figure out what it was and how to treat it. The doctors were unsuccessful and they were all scratching their heads. So I'm now home and having rough times. I am glad that I had it put in, I just want to figure out what to do with my new problem.

Has anybody else had a baclofen pump put in or heard of somebody who has? Have they experienced the same problem? Any ideas on what to do?

Dexter

I've had a Bacolfen pump for about 3 years right now and love it as well. I did have a huge amount of pain to the point where i spent 2 weeks after the surgery in bed because of a spinal leak from where they did the spinal tap to see if the pump would work. But other than that its been a miracle for me

[adam_downunder]

I have a baclofen pump also and when it was first implanted I had the catheter slip out of place and required surgery to rectify the problem. After the initial surgery we dropped the oral bacflofen dose very gradually as we increased the dose the pump was supplying until we found the optimum dose.

After the corrective surgery we dropped the oral bacflofen dose and raised the pumps dose much faster as we knew what our goal dose was. Once we reached the dose I then had about 3 days of the most intense nerve pain I had ever felt. I couldn't get out of bed, I was bombing sleepers and pain killers (which I hate taking) just to try and get through the suddenly very long days and nights. The pain subsided eventually and the only thing the doctors and I could put it down to was the body having withdrawal symptoms due to the oral dose being taken away too quickly.

I have no idea if this is relevant to what you are experiencing, but perhaps it is. The first time round we adjusted the doses over about a week and a half. The second time around it was done over about 3-4 days.

Hope this is being sorted out for you.

Adam

[bbqsteve]

I am on my second intrathecal pump. Have had one since 2001. I was once an L4-5, L5S1 incomplete with tremendous pain, but recently a new injury left me T12 complete. I still have the pump and it works great. My pain doc mixes dilaudid with baclofen as my pain was first problem for me and spasms were secondary. I was taking soam for breakthrough spasms and oxyIR for breakthrough pain, but new injury has pump doing it all almost. Still need my morning oxy's to get up and around. Might try a mixture for the pain and spasms in your pump.

[dexter]

bbqsteve, on Sep 22 2009, 09:37 AM, said:

I am on my second intrathecal pump. Have had one since 2001. I was once an L4-5, L5S1 incomplete with tremendous pain, but recently a new injury left me T12 complete. I still have the pump and it works great. My pain doc mixes dilaudid with baclofen as my pain was first problem for me and spasms were secondary. I was taking soam for breakthrough spasms and oxyIR for breakthrough pain, but new injury has pump doing it all almost. Still need my morning oxy's to get up and around. Might try a mixture for the pain and spasms in your pump.

Wow. These are all great answers. Thanks so much. This is the kind of stuff i wanted to hear. So I'm not the only one experiencing this for the first time.

My doctors were talking about mixing pain medication into the pump itself but I wasn't sure what they used. Do you know what dosage of dilaudid they use?

Please keep it coming if anybody else has had a baclofen pump. This is all great information.

[dingle]

Hello
I had a baclofen pump put in 12 years ago and I did not have any spasms at all,
after 2 days I started to have problems,
hallucinating so I had it switched off and on again,
on and off again but I still hallucinated and it has been off for the last 11 years,
on Saturday my spasms nearly threw me off my driving seat,at the moment it is like having a sack of eels in my trousers,
I am jumping about all over the place,
I am seeing a doctor tomorrow to see what can be done.

Edited by dingle, 23 September 2009 - 10:35 AM.

[Apparelyzed]

Quote

hallucinating so I had it switched off and on again,

Why didn't your doctor just turn the dosage down?

Simon

[dexter]

dingle, on Sep 23 2009, 03:32 AM, said:

Hello
I had a baclofen pump put in 12 years ago and I did not have any spasms at all,
after 2 days I started to have problems,
hallucinating so I had it switched off and on again,
on and off again but I still hallucinated and it has been off for the last 11 years,
on Saturday my spasms nearly threw me off my driving seat,at the moment it is like having a sack of eels in my trousers,
I am jumping about all over the place,
I am seeing a doctor tomorrow to see what can be done.

Wow, that's quite the experience. So you decided not to use it at all?

[bbqsteve]

not sure but the pain med dilaudid was much more %wise than the baclofen for my previous ailment. I was talking to him about phasing out the spasms med baclofen due to no more spasms with the para, but after talking to you guys, I might have him keep it there for "keeping away" the spasms. It was like 95% to 5% dilaudid to baclofen, but I'll check to see if I can get a reading on the mixtures for you.

dexter, on Sep 22 2009, 07:44 PM, said:

bbqsteve, on Sep 22 2009, 09:37 AM, said:

I am on my second intrathecal pump. Have had one since 2001. I was once an L4-5, L5S1 incomplete with tremendous pain, but recently a new injury left me T12 complete. I still have the pump and it works great. My pain doc mixes dilaudid with baclofen as my pain was first problem for me and spasms were secondary. I was taking soam for breakthrough spasms and oxyIR for breakthrough pain, but new injury has pump doing it all almost. Still need my morning oxy's to get up and around. Might try a mixture for the pain and spasms in your pump.

Wow. These are all great answers. Thanks so much. This is the kind of stuff i wanted to hear. So I'm not the only one experiencing this for the first time.

My doctors were talking about mixing pain medication into the pump itself but I wasn't sure what they used. Do you know what dosage of dilaudid they use?

Please keep it coming if anybody else has had a baclofen pump. This is all great information.

[dexter]

bbqsteve, on Sep 25 2009, 08:35 AM, said:

not sure but the pain med dilaudid was much more %wise than the baclofen for my previous ailment. I was talking to him about phasing out the spasms med baclofen due to no more spasms with the para, but after talking to you guys, I might have him keep it there for "keeping away" the spasms. It was like 95% to 5% dilaudid to baclofen, but I'll check to see if I can get a reading on the mixtures for you.

I would love to find out when you talk to them. Please let me know.

[June]

Well, this is my first time on this site. I have been searching for intrathecal pain pump meds and have been unsuccessful. I came across this very helpful webpage. I saw the word "Baclofen" and I jumped at it. I have a "Medtronic" pain pump for 2 1/2 years now and it has been an answer to pray. I was on so much oxy a day plus others. Afters years of that I could feel the medicine literally and slowly killing me I couldn't do it anymore, then my doctor put in this pump that has been a miracle. It wasn't until recently that I've learned that certain meds that are put in get into the brain. I learned the hard way when I couldn't figure out why I was having a hard time with my memory. I have L3-S1 injury and my pump has a mix of dulaudid and fentynel. The doctor has increased the dose slowly over the years and recently put in a medication called Clondine which is a blood pressure medication. Well I have side affects from that but I'm also going through some pretty severe pain at the present and cant bend or move. The doctor is now mixing or I should say adding Baclofen to the mix of meds in the pump. If amazes me how it knows how and when to dispurse so much every minute. I'm trying to find out more on the medications used and the affects it can have because I have had some doosies. Well I hope I have helped a little. Its nice to see that I'm not alone here. June



j :emoticon-0165-muscl

dexter, on Sep 22 2009, 05:44 PM, said:

bbqsteve, on Sep 22 2009, 09:37 AM, said:

I am on my second intrathecal pump. Have had one since 2001. I was once an L4-5, L5S1 incomplete with tremendous pain, but recently a new injury left me T12 complete. I still have the pump and it works great. My pain doc mixes dilaudid with baclofen as my pain was first problem for me and spasms were secondary. I was taking soam for breakthrough spasms and oxyIR for breakthrough pain, but new injury has pump doing it all almost. Still need my morning oxy's to get up and around. Might try a mixture for the pain and spasms in your pump.

Wow. These are all great answers. Thanks so much. This is the kind of stuff i wanted to hear. So I'm not the only one experiencing this for the first time.

My doctors were talking about mixing pain medication into the pump itself but I wasn't sure what they used. Do you know what dosage of dilaudid they use?

Please keep it coming if anybody else has had a baclofen pump. This is all great information.

[bbqsteve]

I have a medtronic 40ml model 8637-40. The printout says : Infusion drug concentration 1 HYBA 7.5 mg/mL . Infusion mode simple continuous drug dose per day 1HYBA 3.6 mg/day. Whatever that means. I guess your doc will know. I know it's mostly dilaudid with a small amount of baclofen for spasms. Refills every 71 days.

dexter, on Sep 25 2009, 01:29 PM, said:

bbqsteve, on Sep 25 2009, 08:35 AM, said:

not sure but the pain med dilaudid was much more %wise than the baclofen for my previous ailment. I was talking to him about phasing out the spasms med baclofen due to no more spasms with the para, but after talking to you guys, I might have him keep it there for "keeping away" the spasms. It was like 95% to 5% dilaudid to baclofen, but I'll check to see if I can get a reading on the mixtures for you.

I would love to find out when you talk to them. Please let me know.

[dingle]

dexter, on Sep 25 2009, 07:29 PM, said:

bbqsteve, on Sep 25 2009, 08:35 AM, said:

not sure but the pain med dilaudid was much more %wise than the baclofen for my previous ailment. I was talking to him about phasing out the spasms med baclofen due to no more spasms with the para, but after talking to you guys, I might have him keep it there for "keeping away" the spasms. It was like 95% to 5% dilaudid to baclofen, but I'll check to see if I can get a reading on the mixtures for you.

I would love to find out when you talk to them. Please let me know.

Hello
I went to see the doctor yesterday but it was not my regular doctor so I have to phone the hospital on Monday and see what they say.

[Lina]

bbqsteve, on Sep 26 2009, 02:35 AM, said:

not sure but the pain med dilaudid was much more %wise than the baclofen for my previous ailment. I was talking to him about phasing out the spasms med baclofen due to no more spasms with the para, but after talking to you guys, I might have him keep it there for "keeping away" the spasms. It was like 95% to 5% dilaudid to baclofen, but I'll check to see if I can get a reading on the mixtures for you.

dexter, on Sep 22 2009, 07:44 PM, said:

bbqsteve, on Sep 22 2009, 09:37 AM, said:

I am on my second intrathecal pump. Have had one since 2001. I was once an L4-5, L5S1 incomplete with tremendous pain, but recently a new injury left me T12 complete. I still have the pump and it works great. My pain doc mixes dilaudid with baclofen as my pain was first problem for me and spasms were secondary. I was taking soam for breakthrough spasms and oxyIR for breakthrough pain, but new injury has pump doing it all almost. Still need my morning oxy's to get up and around. Might try a mixture for the pain and spasms in your pump.

Wow. These are all great answers. Thanks so much. This is the kind of stuff i wanted to hear. So I'm not the only one experiencing this for the first time.

My doctors were talking about mixing pain medication into the pump itself but I wasn't sure what they used. Do you know what dosage of dilaudid they use?

Please keep it coming if anybody else has had a baclofen pump. This is all great information.

The dose of dilaudid is not calculated relatively to the intrathecal baclofen. Usually ,the dose of intrathecal morphine is calculated first (1/100 of the oral morphine dose) ,then 1/5-1/2 dose of the calculated dose is given as a hydromorphone (dilauded) intrathecally.Then the dose can be titrated up over the time depending on the level of pain relief and the advrse effects profile.

[June]

Lina, on Oct 3 2009, 10:34 AM, said:

bbqsteve, on Sep 26 2009, 02:35 AM, said:

not sure but the pain med dilaudid was much more %wise than the baclofen for my previous ailment. I was talking to him about phasing out the spasms med baclofen due to no more spasms with the para, but after talking to you guys, I might have him keep it there for "keeping away" the spasms. It was like 95% to 5% dilaudid to baclofen, but I'll check to see if I can get a reading on the mixtures for you.

dexter, on Sep 22 2009, 07:44 PM, said:

bbqsteve, on Sep 22 2009, 09:37 AM, said:

I am on my second intrathecal pump. Have had one since 2001. I was once an L4-5, L5S1 incomplete with tremendous pain, but recently a new injury left me T12 complete. I still have the pump and it works great. My pain doc mixes dilaudid with baclofen as my pain was first problem for me and spasms were secondary. I was taking soam for breakthrough spasms and oxyIR for breakthrough pain, but new injury has pump doing it all almost. Still need my morning oxy's to get up and around. Might try a mixture for the pain and spasms in your pump.

Wow. These are all great answers. Thanks so much. This is the kind of stuff i wanted to hear. So I'm not the only one experiencing this for the first time.

My doctors were talking about mixing pain medication into the pump itself but I wasn't sure what they used. Do you know what dosage of dilaudid they use?

Please keep it coming if anybody else has had a baclofen pump. This is all great information.

The dose of dilaudid is not calculated relatively to the intrathecal baclofen. Usually ,the dose of intrathecal morphine is calculated first (1/100 of the oral morphine dose) ,then 1/5-1/2 dose of the calculated dose is given as a hydromorphone (dilauded) intrathecally.Then the dose can be titrated up over the time depending on the level of pain relief and the advrse effects profile.

I have a medtronic Pump model 863720AA w/Calibration Constant 118 my pump at current has DILAUDID 15.020mg/day FENTANYL 1.5020mg/day and temperarily CLONIDINE 0.06008mg/day I will be going back this month for my fill and my doctors is going to remove the Clonidine and add Baclofen. I've been takng it orally and it has really helped with my back pain and spasms. I was on soma 3x/day. Does anyone have any kind of side affects from the baclofen in their pump, like dizzy, sleepiness etc. I know with the Clonidine in my pump it made me fall asleep no matter where I was. It was terrible. How are you guys doing on the baclofen.

Edited by June, 05 October 2009 - 07:24 PM.