ITB pump and the hug

[nappy]

I have had a ITB pump for about 3 and a half years.

I has been a tremendous help with dealing with my spasticity in my hips and legs.

However for the last year and a half, my shoulders, neck, and arms have decided to join in on the spasticity. My neck and shoulders get rock hard and I will often end of with a migraine from the muscles being so tight.

I have gone to PT and massage for these issues, but they are both short term minimal relief and expensive.


For the past few months, the tight banding around my chest has become every increasingly worse. I know it sounds odd, but at times, I have found that increasing the pressure seems to conteract the sensations.

Years ago, I found that this helps with my legs and the spasms in them. I would go out to the couch and contort myself into weird positions so that I could cram my leg down between the cushions. I also wil out part of me under my husband while we sleep and that seems to help.
If I am having issues with my feet, then I tighten my shoes.

These efforts don't always help, and it is only temporary and I have to move and try somethng new. But at least they work for a while.

Finally to my question. I have found temporary relief from the banding and tightness if someone cracks my back. I even have had my kids walk on my back.

It does crack and move a little. It seems if they stand there a while, the muscle will finally "give in" and relax for a bit.

My worry is that I am have the worst pain and discomfort right where the catherter in my pump ends.

Do you think manipulating my back at the level will interfere with the operation of my pump.

I am on 380 mcg a day and also wondering what the "usual" dose is. If there is such a thing as that!

Thank you,

[rdmc]

Hey Nappy,

I'm afraid to even have a massage in the area of the catheter. Mine is at T9, and even if I'm having my husband give me a backrub, I make sure he stays way above the level of the catheter.

I've heard others say their doctors gave them no restrictions as far as movement. I think Bob said he wasn't given restrictions. But my instructions were very specific, even when having PT. Never bend forward at more than a 90 degree angle, and never twist sideways at more than a 45 degree angle. Also be careful about stretching upward and putting both hands above my head (which one arm won't do anyways.)

I do know what you mean about putting counter pressure against the spasm with the hug. I have one of the heat packs, long tube filled with buckwheat (I think) that you heat in the microwave. My hug hits me at bra line, so I
heat it up, put it between my shoulder blades and lean back into it.

Call your physiatrist, or whoever manages your pump meds, and see what they say. Or you could call Medtronics and talk to their techs. If they give you the go ahead, then you'll know what's safe and what's not. I may be on more stringent restrictions because I have had the catheter come out (and once that happens it's back to the OR.)

As far as upper body spasticity, I take an oral dose of baclofen.