new baclofen pump

[dgrotz]

This past Friday 11/23/07 I had the surgery to have a baclofen pump placed and filled, I was told to stop the oral baclofen and the pump will prevent any withdrawals. I have been on 90mgs a day for about 5 years (started at a lower dose). Overall my spasms are more controlled but my nuropathic pain is easily 3x's worse (pulsating and burning in legs, hands, abdomen, stomach) and I'm pretty sure I'm having withdrawals during the nights.

Each night/morning since my surgery has been worse than the last. I’m anxious, scared, depressed, my skin crawls and last night I actually was hallucinating and woke up not knowing where or who I was. That never happens to me.

I have talked to the pain managment clinic and they said I shouldn't be having withdrawals and gave me pills to help the spinal headaches.

I have begun taking 1 vicodon these last three mornings just to feel normal; I don't use them often out of fear of addiction but have a couple left from a tooth extraction 11/20/07.

I'm not in my chair more than 4-6 hours a day because the incision on my back will cause a massive headache (unless I take another vicodon).

I guess my ultimate question is has anyone had or heard of these problems? Is the vicodon a bad idea? I appreciate any and all replies.

Thanks,

[sjean423]

I was on 80mg a day, and ramped it down over several days. I feel that that was too fast, as I did have some rather vivid nightmares and some anxiety, but nothing like you are having. But I was told that stopping all at once wasn;t appropriate. I was on both baclofen and dantrium. I had stopped the dantrium before the surgery, than after, I dropped 1 baclofen (20mg) a day . I didn;t have the spinal headache, so I don;t know about the vicoden, but I was on additional pain meds b/c of the surgery anyway (percocets).

[darrel]

I was on dantrolene and had to back off of it from 300/day down to 200/day after 4 days and then down to 100/ day after 4 more days and then off completely and rely on the baclofen pump..I did go in and get the dosage increased from 100 mcg/day to 110mcg/day and just today I got bumped up to 132mcg/day and then on the 10th of next month I'll get pumped up another 10 mcg/day and then see from there..

I personally feel that they shut you off of your oral meds to fast or they should increase your dosage on your pump...

as far as your pain see if you can get on Ultram it is not habit forming and it helps alot better than the vicodin and it knocks the spinal head aches out..you will have to lay down for several hours at a time to help with the head aches.. I know how you feel, I just had my pump put in on the 31st of Oct. so it has been 27 days for me and already had increased two times...good luck with yours, feel free to PM me for any other clues as what to expect.. it sucks not knowing what to expect.

[dgrotz]

thank you both, my internet went down last night so I couldn't reply but I did take a 20mg baclofen pill last night and that relly helped. i have no more pain pills just caffeine pills for my headachs and francly their not cutting it. How long will these spinal head aches continue? If I'm in bed there not bad but I want to start being out of bed more. Anyone have expeirence with nuropathic pain? I just wondered if it'll go back to the way it was or should I just increase my lyrica dose it's 100mg x3 now, the burning and pulsating has been getting worse but after surgery I'd rank the pain at like 9 compared to maybe 4 before.

Thanks,

[sjean423]

Glad you are feeling a bit better. Sounds like taking that baclofen last night was a good idea. I would think you need to talk to your doctor about some temporary pain meds, and about easing off the oral baclofen a bit more slowly?

[alex1]

I had my pump put in recently as well. i, too, experienced spinal headache but it cleared up on the 7th day. lying down helped but one could only lie down for so long in a day. i wouldn't worry too much about the spinal headaches because the doctors assured me that they do not have long term effects. i also took some vicodin, but like you, they weren't that effective. i have yet to hit the right dosage for the pump to control my spasms but i understand that it takes awhile before the doctors find a happy medium. i hope that you find it soon.

[dgrotz]

I am over all my withdrawls and headaches. I feel the pump was well worth the few days of hell I went through. I'm finaly able to lean over and use my remotes, get a drink, or whatever with out having to wait for my hand to stop shacking. My spasms are now finaly truly controled!:applaud:

[sjean423]

Fantastic!

One thing I did find tho is that I had to have mine adjusted up a bit as time went on. I was told that it was nrmal to have to do that. So don;t get worried if it doesn-;t seem to work as well after a while.

[darrel]

I had to call yesterday to get mine increasesd 20%, I'm now at 158.6mcg/day ... long way from max dosage..

nice to see you on the board alex!

[zilnh]

Could someone explain why the pump works better than the oral med? Does it have fewer side effects? Is it the same medicine? Would one be able to take a lower does and have similar effects as the oral meds?

Thank you,
Liz

[sjean423]

The pump puts the med directly where it is needed. The oral med effects your whole body. My pump dose is around 130 micrograms. I was on 80 miligrams of oral baclofen before, without satisfactory results. Any more oral meds and I would be asleep in mis sentence. So I am getting less than 1/200th of the medication. Think of the difference with an inhaled asthma med vs an oral one. I can direct you to a lot more detailed and technical info if you want. (It is probably in one or my or Darrel's old posts if you search) So yes, much lower side effects. It is the same medication (baclofen in this case, but a pump can be used for other purposes).

[zilnh]

I will search, thank you. I appreciate all of this information very much.

Liz

[sjean423]

I started poking around, while a search will give you a lot of good information, there are TONS of threads.

Here is the information from medtronic that I was given when I was considering it:
http://www.medtronic.com/neuro/spasticity/itbtherapy/exploreitb.html

A lot of onfo over on apparalysed as well. Simon has a whole forum dedicated to it.

http://www.apparelyzed.com/forums/index.php?showforum=28

specifically:

http://www.apparelyzed.com/forums/index.php?showtopic=147







(http://www.medtronic.com/neuro/spasticity/itbtherapy/exploreitb.html)

[cara_m]

Could someone explain why the pump works better than the oral med? Does it have fewer side effects? Is it the same medicine? Would one be able to take a lower does and have similar effects as the oral meds?

Thank you,
Liz

I'm not a doctor or nurse but I can explain it from how I understand it. When the pump is placed in the abdomen, there is a wire catheter that reaches around your back and in my case hooked up to the lumbar area of the spinal cord. If I myself am understanding it correctly, the drug is delivered directtly into the spinal cord and I believe it relaxes the autonomic nervous system. Since the drug is delivered in this way, it does not go to the brain or in the blood stream and that is why it does not give you the same effects that oral meds would. It really is the same drug as the oral but at a much higher concentration. That is why with the pump you can have 100, 200, 300 or even 700 ug/day. I don't believe there are any side effects you just need to make sure you keep all appts. for refills and always make sure the pump is interrogated according to what you and your doctor discussed. Good luck. It really is great for severe spasticity.

[darrel]

the best way that I have seen it described is very simple...picture a ball field with a baseball mitt in the middle of the field, now you go up in a helicopter with a box of baseballs and dump the box over the mitt and see how many land in it..that is the affect that oral baclofen has..
baclofen through the pump is sooo much better it is like having the glove on and setting the ball in one at a time...none miss..... it is so direct and accurate.

instead of the baclofen going through your system orally and maybe getting to where you need it.. with the pump it is delivered directly to the area of where you need it, no missing..

there is some side effects that I have noticed and they are not too bad considering the good that it does, the side effects that I have noticed are I still get sleepy and I do get nauseated for a few seconds once and a while but I can live with that.
hope this helps understand the difference of the two.

I did alot of research and serious debating on weather or not to get the pump. I had read some horor stories (worst case senerio) and I figured that if the cons out wieghed the pros then they would not try to put them in I am glad that I had it put in.