5 replies to this topic

[willow]

Hi all,
I got my synchormed II pump a little less than one year ago and I need a third reviosn. I ended up in the ER three weeks ago in Baclofen withdrawal, my neurosurgeon admitted me. A few hours later he was admited to the ICU!! Well, he is seeing me in the office today. I stayed in the hospital two nights to get the pain and spasticity under control. Had a fever, rigid muscles, the works. Seeing another doctor when you are hooked in with a surgeon is impossible. The pump docttor I was seeing didn't know what to do but pump me up with oral Baclofen which makes me ill at the dose I am supposed to take {60-80 mg a day} My pump is set at 500 mcgs-but they really don't know how much I am getting. I had a refill a week before the ER run and I had 9 cc in my pump instread of 3.3. I had been slowly getting tighter. The pump doc talked to the neurosurgeon and I was to get into the office. Well, in the interim I saw an old pump doctor who saw me as a favor when I didn't know how long the neurosurgeon was going to be out. He tried to aspirate fluied from the cath. port and got nothing. It was dry. No baclofen and no spinal fluid. So it could be a bad motor, kinked cath or scar tissue forming around the cathetar. I need a dye study and fix up farily quick. I really want this to work. I do feel better when it is funtioning. I feel bad for the neurosurgeon but I was gettting to be a bitch calling his office a lot to find out when he was getting back. The medtronics nurse kept telling me this can't wait too long. He starts operating next week so I am hoping I will be near the top of his list. I have been wating three weeks. Plus with health insurance {I have met my out of pocket for the Year} I will have to start from zero if I have to wati till next year. Life is work lately. I got hope and am still hoping this pump works out. But this is getting a bit ridiculous. Willow

[willow]

Saw the neurosurgeon yesterday. My C5C6fusion has healed well. That is the good news. The bad-the surgeon seemed to think I had been worked up already with xrays etc. Nope. So he sent me for a basic abd. film. It was a bit later in the day. Got back to his office and he was walking out the door!! I have to go back next week to get things set up. From talking to him and Medtronics it sounds like another kink that needs fixed. His schedule is booked for God knows how long. I just want it fixed once and for all.

[lori2050]

Hi Willow,

I just had my third revision. I had the Sync II pump orginally placed in July of this year. Then the end of August I began having fluid leak in my abd and a spinal headache. The catheter had disconnected from the pump.

Then in December I went for a refill and they coundn't find the port. The Dr flipped it and then found it and the pump had to much med in it. I had an increase in tone for the few weeks prior but not a headache. So I was looking at surgery again.

This time they placed it in my back. They say that I am "too active" to have it in my abd. I have to just laugh at that. I am not that active, I do walk w/a walker and use a scooter but that is about it.

I developed an allergy to the strei strips and still have a lot of pain when I roll over, but I have had a better experiece this time around. I made a lot of preop demands and they followed them, one that they start me at a low dose.

I am not quite up to my right dose but working on it. Last night I had a bad night as I couldn't get comfortable.

All in all I think it was a right choice for me. I have spastic cp and had a stroke three years ago. I see a marked decrease in the tone in my arm when I have the pump and oral baclofen makes me so sick.

You are right you have to feel confindent in your dr. I am questioning the neurosurgeon's ability and if I have any more problems I may consult someone else. Hang in there.

Lori

[lori2050]

 lori2050, on Dec 29 2005, 03:03 PM, said:

Hi Willow,

I just had my third revision. I had the Sync II pump orginally placed in July of this year. Then the end of August I began having fluid leak in my abd and a spinal headache. The catheter had disconnected from the pump.

Then in December I went for a refill and they coundn't find the port. The Dr flipped it and then found it and the pump had to much med in it. I had an increase in tone for the few weeks prior but not a headache. So I was looking at surgery again.

This time they placed it in my back. They say that I am "too active" to have it in my abd. I have to just laugh at that. I am not that active, I do walk w/a walker and use a scooter but that is about it.

I developed an allergy to the strei strips and still have a lot of pain when I roll over, but I have had a better experiece this time around. I made a lot of preop demands and they followed them, one that they start me at a low dose.

I am not quite up to my right dose but working on it. Last night I had a bad night as I couldn't get comfortable.

All in all I think it was a right choice for me. I have spastic cp and had a stroke three years ago. I see a marked decrease in the tone in my arm when I have the pump and oral baclofen makes me so sick.

You are right you have to feel confindent in your dr. I am questioning the neurosurgeon's ability and if I have any more problems I may consult someone else. Hang in there.

Lori

Well last week I went for the first refill since my pump revision. I next day I felt really bad so went in and had him lower my dose. By that night I could barely walk. Went back on Mon and they readjusted me again and did some lab work. Wanted to rule out an infection. My potassium was really low? Still am weak so they wonder if I may have had another stroke. Can't have MRI until this Tuesday. Meanwhile I am really frustrated.

Lori