ONLY REPLIES IF IT APPLIES (BACLOFEN PUMP AND EVAL)

[Dreams008]

I am scheduled for a Baclofen pump evaluation this Friday at the University of Miami. I have never had a spinal tap before and I'm nervous of the actual procedure and after. Can anyone tell me, with brutal honesty, what the procedure is like and how you felt during and after. I realize every one is different, but I'd like an idea of what I'm getting into. Bad headaches? Vomiting? Pain during procedure? I know I'm in good hands, as the head of neurology does the procedure, but it's your spine, and well, I'm scared. I normally do pretty well with putting my brave face on and handling pain. Taking Copaxone was awful for me, so I always compare the pain to that. lol. So far, nothing has compared...nasty drug Please respond. I need some encouragement. Also, for those that have the pump. Life changing? Worth it?

[Marco]

For me, I had the procedure in the doctor's office and the actual procedure wasn't bad at all. There was more pressure than pain and it lasted a bit over 30 minutes. I did have the post-spinal headaches (more frequent in men) that was rather painful. To minimize side-effects you need to hydrate, hydrate, hydrate and take it easy. Caffeine is actually suggested after the procedure and you should lay down flat if you get a headache to reduce the pain. Once your body replaces the extracted fluid side effects normally go away.

For the vast majority of patients the worrying before the procedure is worse than the procedure itself. For a subset of patients the post-procedure headaches can be brutal. The headaches normally go away in under 2 days without any intervention. As a precaution I would ask your doctor about after-hours/weekend care in case you need to come back for a blood patch. The blood patch almost always resolves the headaches and is a relatively quick procedure. I've seen women compare child-birth pains to the headaches ... meaning Copaxone would be like taking a Tic-Tac.

[Marie12]

Personally, I think the name of the procedure worried me

I personally waited too long to have it done. And I didn't know about this website back then. Search for spinal tap on this website. There is very informative stuff that I wish I had known before I had my spinal tap, what to eat, what to drink, before, after.

That could have helped me a lot. I'm just a wimp, but now I've had so many things done, that the nurses are surprised that I am not any trouble.

I am just a wimp. I almost didn't get married 38 years ago, because we had to get some type of shot before they would approve the marriage license. I don't remember what that shot was even for.

[KatieAgain]

I had two spinal taps and they both hurt. Did get a headache from one because my ex-husband passed out on top of me during the procedure...seriously, true story. Ended up in ER.

With that said, spinal taps have come a long way since then. And for the most part...it depends on the skill and experience of the Neuro and it sounds like you are in good hands. Additionally the procedure is short lived...does not take long. Pain initially, then pressure.

I have taken Copaxone and for me that was no worse than being bite by a mosquito. You might want to ask your Neuro for some Valium or medication to calm you down for the procedure.

[DebbieB]

Dreams, I've had several (maybe 8 if I had to guess). I'm old school, have had MS since 1988, and back in "those days" spinal taps were THE primary tool for diagnosis (as opposed to MRIs now).

Take great solace in the fact that the "head of Neurology" is actually doing the procedure. Many of mine were done by Residents being observed and some just sucked, to be honest with you. The procedure itself is not horribly long, you just have to remain extremely still. I am very confident that with a skilled Neurologist, you will not have any problems with the procedure. During you just feel a longgg pinch (a kinda hard pinch, but nevertheless, a pinch).

However, as Marco pointed out, the headaches can be severe. A "Spinal headache" (as I call them) is unmatched, unfortunately, in the discomfort and pain. Migraines x1000.

Tips - 1) when they say "do not move" after the procedure - do not move! You will have to lay on your back motionless for awhile (a long while), but please do it. You will be tempted to just lean up and just-get-that-remote - but don't do it! It screws something up and your headaches will be more severe.

2) Think now about how you can redirect from the headache pain - whatever your "thing" is, praying, meditating, music, whatever, think and plan now for what you'll do when the headache hits. You won't be able to think when the headache comes.

I honestly would say that the procedure and after effects (how bad the headache is..) is directly related to the individuals' skill who is performing it. So, it's good news for you, dreams, you have the best performing the procedure.

I wish you the very best of luck Friday! Please let us know how it goes!

[rdmc]

If you are asking about the pump eval it's a piece of cake, IMO.

Here's how it went in my case. First thing I did was go to the rehab floor at the hospital, and they measured my range of motion, took videos of me walking and performing other tasks, so as to measure the change in spasticity that occurs after the bolus of baclofen.

Then down to the radiology department for the bolus of baclofen. What you have to remember about the baclofen test that's different than a spinal or lumbar puncture is with the baclofen eval, they're putting fluid in, not taking fluid out.

I do know folks who have had spinal headaches after the pump was implanted, I did not, but I don't think I've heard of folks having spinal headaches after the bolus...maybe so, and I'm sure they'll check in.

Then back to my room in the hospital (they do lay you down flat as a precaution, I'm sure.) They waited about an hour and came and checked me. Same range of motion tests, video tape your walking etc. With me they did this about every hour for about 4 hours. I responded very well to the bolus.

Nice thing, and I think this is usually the case, is there's a Medtronic rep there with you, as well as drs. explaining everything they're doing each step of the procedure. I can honestly say I didn't feel anything with actual procedure to put in the bolus of baclofen, and I have had a couple spinals that I did feel pressure/pain with.

At the end of the test, they can pretty much tell you, and you'll either notice it or not, the difference the baclofen makes.

For me it was near miraculous. Now as to the pump, I've had a few problems with mine, in fact I'm having an issue now, but I would deal with any of the problems, because the relief I get from the pump can't even hold a candle to how I feel and how I move when I just take oral baclofen.

The whole baclofen test day, for me, was a very enlightening day. First to have an accurate measurement of my range of motion (I knew it was bad, but wasn't aware of how bad it was till they ran me through the motions.) All the docs, and others who were there in the radiology department, were super encouraging, and reassuring . Getting back to the room and realizing 1/2 hour in that I was moving my ankle which I hadn't been able to do for years, and then seeing the results on my other movements was exciting.

Once again, not to say the pump is right for everyone, and I'm not saying that having a pump is not without it's problems and complications of it's own, just saying that for me it was the best decision I've made in my MS journey.

[Kimba22]

I agree with rdmc about the baclofen pump eval ... I did not think it was that big of a deal. There was very little, if any, pain with the procedure. Maybe just a slight pinch when the numbing med was injected, and then a little bit of pressure. No vomiting, no headaches. It's been several years for me, so I honestly don't recall whether or not a Metronics rep was there or not. But it was done at the largest University hospital in my metropolitan area, by a highly regarded physiatrist whose specialty included the treatment of spasticity.

I had a lot of pain with my spasticity, and the bolus amount of med he used provided me with complete, 100% pain relief - for the first time in years! Unfortunately, it turned out it also took away too much of my tone, which I needed to walk. From what I remember, I could still walk at the hospital ... but by the time I got home I was experiencing significant weakness and could barely walk. Just went home and laid flat on my back, anyway (to avoid a spinal headache), and it was so nice to be pain free. It took several months to find the maximum dosage I could reach without loosing the tone I needed to stand up and walk.

Was it life changing? In my case, it didn't have a profound affect on my walking, like we were hoping. But, my head is no longer in a fog from taking high doses of muscle relaxants, the spasticity in my legs is now under control (and it doesn't start to creep back up within a few hours, like it did on oral medication), and some (not all) of my pain is gone. So, it has improved my life in many ways!

It sounds like you will be in very good hands, and I hope sharing my experience helped alleviate some of your fears. Just follow your doctor's instructions. I hope you have excellent results and this will be a life changing therapy for you! Please let us know how it went.

Good luck ,

[90stangg]

The procedure went really smooth. The injection point did leak, and i ended up having to get a blood patch a few days later. Nothing I didn't expect. I had problems with a spinal tap leaking years ago, and needed a blood patch than also.

The pump has helped. I also have the MS Hug, and during the trial it seemed to help relieve the hug so they put the catheter all the way up to C4. It has helped, and that made it all worth it by itself.