2 replies to this topic

[rilee101]

Hey everyone!! I hope that everyone is having happy holidays. I just got out of the hospital thursday. My doctor that put the baclofen pump in was supposed to do a blood patch to stop my spinal fluid leak but when I got to the hospital they told me that they couldn't do it. They told me the only reason they do the blood patches is to stop the headaches and that it would not help the leak but possibly make it worse. My questions to you all is this true?? I admit I didn't reseach bacolofen pumps at all before getting one placed. I listened to the doctors and the physical therapist rave about how much it would help me and increase my mobility. It had seemed to me that my dream of walking on my own two legs without the assitance of a walker or a cane was finally in reach. So I jumped at the opportunity to get the surgery. But I have learned from my naive ways and have read and reseached my options. What I understand of the blood patch is that it does clot around where the fluid is leaking out, correct? I know that there is the chance of infections. But alas I didn't get the patch instead a nuerosurgeon came and said he could find that leak and close it and I should be fine as long as the cathader was not damaged in the process. I went home and read about this procedure and felt comfortable(well as comfortable as you possibly can feel with someone cutting into you like that). The next day I went in and had the surgery spent two days in the hospital and then sent home again. Finally I had relief from the headaches and it felt great. Then on Christmas the headaches returned, the lump in my back where the spinal fluid had been collecting was back but much larger, and I cant be seen until next tuesday. Does this suck or what. I am trying to comfort myself with saying that nothing in life is a garantee, but a gamble. But truthfully it isn't working.....three months ago it worked, but now I am just at the end of my rope. So I am pleading with you all....what does one do from this point on?? My family is suffering, I am suffering, and I get no remorse from the docs. i know that I am too nice but do I need to be a B to get some relief. Is that what it takes in the world to be taken care of??

Thanks,
rilee101

[lori2050]

Rilee-

It sounds like you are having a leak from your pump. I had a pump placed last summer 05 in July and then my stomach swelled up and my tone increased and I ad headaches. The pump had flipped and catheter kinked. Then the pump flipped again in October and they discovered it when they tried to refill it. So I had surgery again in December and they moved the pump to my hip area. So far so good and I haven't had problems with it flipping.

I have had other issues like problems during refill and pain around the site now but I have lost about 20lbs so the pump tends to move more in the pocket that it lies in.

The best advice I would have would be to go to the Medtronic website and look for another doctor that works with pumps that may be in your area. Get a second opinion.... or call the office and demand that you are seen sooner. Or you could try the ER route. It is not good to be leaking fluid as you are not getting the right dosage. But at least call Medtronic and ask for additional dr referrals that is better because they may have updated information than their website.

Lori

[rilee101]

hey I was just letting everyone know how I was doing with everything..I just got out of the hospital two days ago. The doctors completly removed the pump and the catheder in my back, but I am still leaking spinal fluid despite all their trials and errors. I am now terrified of getting one put back in. The doctors say that my case is extremely rare and they are pretty stumped why I would still be leaking the fluid but it just seems to be a case of really bad luck.