Ok so had a pump put in about 6 weeks ago - it seemed to all be going well for the first week until the spasms started again big time. Since then I've been gradually having the dosage increased from 120ish to now 720. Not done diddly squat for the spasms. I have an appointment in two weeks time for a load of tests to try to establish if pump is working or not.

BUT - last couple of weeks I've been getting really bad muscle aches (feels like flu type muscle aches), back aches and now starting to get the first signs of AD headaches from time to time

I know there's a slight CSF leak but can anyone tell me if the symptoms I'm getting above are likely related to the CSF leak or do they sound more like baclofen withdrawal ? I have been taking 10 or 20mg of oral baclofen to try to make spasms more manageable (was on 100mg pre pump insertion)

Anyone got a link to baclofen withdrawal symptoms?

Ta

Russ

I can't tell you anything about baclofen withdrawl, but I had a CSF leak which made me feel really achy with back pain and a really bad headache, which was made worse when I sat upright, mine was quite a major leak so if yours is only slight then the headache might not be as bad, but mine did feel like an AD type headache. It could be its a bit of both.

Hope this helps, and you feel better soon

Jules
xx

Thanks Jules - that sounds just about right. What did they do about yours? They've so far told me mine will sort itself out in two or three months but I've only just started getting these worse symptoms

I had the catheter slip out 3 weeks after my pump was initially placed. The CSF leak was good enough that the pump was floating around in fluid and the area where the pump is planted was 2-3 times larger than it should have been. Also, the site on my back was the size of a golf ball. The re-operated 3 weeks later to sort it out. Luckily I didn't get the headaches, but I hear they can be quite bad and yes, similar to a AD headache. Once the problem was sorted I did have a minor leak. They said it was just around where the catheter is still healing in. I was just to wear an abdominal binder to maintain pressure and it sorted itself out in a few months.

720mcgs is a pretty high dose. I am on 400mcgs and apparently I am on the highest dose out of the patients that have pumps in Brisbane. I too have had to slowly increase the dose, and although I could probably use a little more help form the pump I am happy with where it is at right now. This thing has to be a solution for me for a very long time so I want to make sure I leave myself with plenty of room to move for the future. I have heard of people eventually becoming 'immune' to the drug and ending up having the pump removed as it does nothing for them anymore.

As far as withdrawal symptoms.... google is your friend! but here is one link Wikipedia Baclofen page

Also, out of curiosity, how effective would you say your bacflofen test dose was... lets say on a scale of 1 - 10, with 1 being very little effect, and 10 being a very great effect?

My CSF leak was a spontaneous one, so I was just on bed rest until the headaches got better, the CSF leak means that the pressure of CSF is lower, and the headaches are known as low pressure headaches. The theory is that if you are lying flat then the CSF will still get up to the meninges and the brain and reduce the headache. They can sometimes do a blood patch, where they inject some of your own blood into the area where the hole is, the blood clots and seals the hole. Mine took about 4 weeks to go completely, the only other thing I can recommend is drinking loads, because even slight dehydration will make it worse.

The effectiveness of the test dose was a 10 on a scale of 1 to 10. They seem quite happy to increase dose right up to the max of 1000mcgs but there's been little or no change in my spasticity as they've increased to dose so notwithstanding the csf leak I have no confidence that the pump is providing baclofen as it should (or possibly that if it is it's just leaking straight out again). Thanks for the info - it's really helpful, looks like I'll just have to put up with the symptoms for another 10 days till I get to the appointment to investigate things.

Gees things sound rough in the UK in that you have to wait for an appointment. I don't know if it would get you anywhere, but I was told that if I ever suspect that something is wrong with the pump that I should present to the emergency department for them to investigate it. Perhaps you should try?? At the bleak end of the scale bacflofen withdrawal can result in death... I guess at least in your case (if this can be a positive) you perhaps were never getting the bacflofen anyway hence nothing to be having withdrawals from? I don't know, but I know if it was me I'd be off to emergency. The least they can do is an X-Ray to trace the whereabouts of the catheter tip to make sure it is where it should be.

PLEASE don't mess around with baclofen...if you are not feeling well GO TO THE EMERGENCY DEPARTMENT!!! My husband nearly died from baclofen withdrawal. He got a 106 degree fever, his heart stopped twice and was in a coma for a week. Get help and don't ignore any symptoms, PLEASE!!! My husband had the pump removed, we do not want to go through that again. Please be careful with the drug and do your homework!

Update here after my tests - turns out that I've got (or had) both the withdrawal and the csf leak. The catheter has become detached (it's in two pieces and joins (or should do) just before it enters the spine) so the pump is pumping baclofen into somewhere it shouldn't be and having no effect - on top of that the cath up my spine is now providing an open path for the leakage of csf. Withdrawal clearly happened about two weeks after pump was implanted and was (by comparision with possible effects) quite mild. Leak is on going.

Back under the knife next week :-) Could really do without this.

Russ

Just wanted to say best of luck for the operation Russ, I hope all goes well, will be thinking of you. Changing subject slightly will you be watching the lions tomorrow, glad Shaw has got a start he deserves it, and should have started last week I think.
xx

Hi Russ,

Really sorry to hear your having problems.

I really hope it is a simple and easy fix this time!

Not wanting to sound negative BUT document EVERYTHING as (I assume) Dr Jamous has inserted the pump.

I am off to a pain Management specialist tomorrow as the after effects of his handiwork have created so many problems!

I am now in agony, feeling really down and depressed and life is really just a nightmare.

Hence my advice to just make sure that you have everything in writing. Just in case. His track record sadly isn't as good as it appears!

I dropped 60 mg of baclofen and 25mg of Diazepam after having my pump inserted and felt very "black" for a period. I kind of new what it was so could work through it. It depends on how each persons body reacts to being withdrawn from a drug.

Good luck,

David

Good luck with the surgery. It seems like a drag but really it's not that far away from being sorted in the gra d scheme of things. Hopefully you get a great result. Mine is great and can't imagine life without it.

Hi Russ,

Hope everythings gone well?

How are you now?

Cheers,

David

Second operation went as planned, catheter tube had actually broken so had to be replaced entirely rather than just being reconnected - these things happen apparently (and I did get a second opinion to check that after Davids comments) rare but certainly not unknown.

Spent a very frustrating 10 days in hospital but now really seeing the benefits, haven't had a spasm at all since the op. Transfers, dressing, in fact just about everything easier now. Thinking about getting dosage turned down to see if I'm not on more than I could be (250 micro grammes at the moment). Will wait till after effects of op go away as if I could feel it I'm sure I'd still be a little sore at the moment.

Thanks

Russ

Hi Russ,

Good to hear you're sorted!

Wait untill your next refill, to see how the pump settles down, you might get used to the dosage after a couple of months.

Then see about getting the dosage turned down. I'd have it done in stages, and get it turned down as low as you can tolerate the residual spasms. Without the spasms, you may notice extra atrophy in your legs, butt and stomach, increasing the para-belly, so a little spasm will help retain your muscle bulk.

Regards

Simon

Glad its getting there Russ!!

Yes spending 10 days in bed is infuriating indeedy! especially if you end up on a 6 bed bay!!

I agree with Simon to an extent.

Wait a brief while to let things settle down ... BUT .. watch out for muscle wasting away now.

I think your aware enough to know to keep that certain amount of Spasm to keep muscle tone.

Careful not to loose it if you are now completly flacid though as it will be hard to get back.

As dropping./increasing the doseage is such and easy procedure and a 5 minute job............I'd keep it in mind to not leave it to long.
All the best,

David

Guys

Just been to Stoke mandeville under Dr Jamous for baclofen pump implant - august 11th - 10 nightmare days of apalling aftercare followed by news that the op was unsuccessful - the catheter had dislodged and was sticking out of my back. Back in 5 days later for the whole thing again - no apology or explabnation. 10 days later, guess what, lump in my back again and catheter dislodged. Outraged at my treatment, noticed from this board previous unhelpful experiences at the hands of this team. I want to make sure this team don't give some other poor sufferer 6 weeks of unnecessary hell by carelessness, incompetence or whatever the reason. i will be taking this matter further so any rlevant experiences Russ or Megatrig please pm me.

He seems to get away with this time and time again!

I just had the Baclofen pump implant a week and a half ago. Immediately, after coming out of the surgery, I began to experience servere pain in my head, neck, arms and shoulders. The arms and shoulders subsided within 24 hours. However, the head and neck pain has increased in intensity to the point I can't even think straight. If I cough, sneeze or just move the wrong way, I get a sharp piercing pain through my head. It usually drops down to some low-level throbbing pain within 15 minutes of onset. I had lost at least 50% of my hearing and today I can't hear anything out of my right ear. My doctor had been treating me with Hypercodone (?) pain killer and has now prescribed a Fentanyl transdermal patch which works over a 72 hour period. What he didn't tell me is that it takes about three days to get into the system and I am currently waiting for him to call back and give me something to ease the pain until that time. At this point, I can't even begin therapy to regain my strength until this issue is resovled. When I began to complain of the nausea, fever and other pain symptons in the hospital the surgeon ordered a catscan. My neurologist wasn't even aware and I've asked him to retrieve the results. He suggested a possible MRI of the brain with the dye to determine what the actual problem is, but doesn't want to go forward with it to see if this will just go away. Not trying to sound too dramatic, but I have been in so much pain for the past several days I would rather just kill myself. At the very least, I no longer have any confidence that this procedure is right for me, despite all of the positive things I have read about it. The hearing issue alone is a major disruption, since it's required for the work I do. At this point, I am at a loss and think I should just get another doctor and have this damn thing removed once and for all. I am writing to get feedback on other people's experience and/or complications similar to mine from this procedure. Any information you can provide to convince me to stick this out or to throw in the towel would be greatly appreciated. Please help, I'm desperate.

Could the symptoms you are experiencing be due to a loss of CSF? Are the doctors aware of a leak? Is the pain lessened when you lay flat?

If it is a CSF related problem, perhaps with a little time it will replenish and you will be right from there.