I'm sorry, but my pump is the kind that's located in front on the right side of my tummy and then it's all sewn into place in my spine. You're in a tough situation and as far as how to find a doctor who's got the necessary experience, it sounds like you might be facing some serious travel ahead. With the rarity of this type of dangerous procedure, I can't help but worrying about you being between the rock and the hard place. I know you'll figure out the best path, and I sure do hope you find it soon. Take care, Bob.
Quote:
Originally Posted by Tired in Texas
Thanks for getting back with me and for all your information. Is your pump catheter located in your lumbar or in your cervical area? I actually have a pump in my back (lumbar) but it really didn't help me enough to continue it. However, it is still in my body and running saline because I am not up to having another surgery right now and might use it for my neck.
I am really concerned about having the catheter placed so high in my neck because I can't find a Doctor who has done more than four and they are so dangerous compared to lumbar pump. It isn't done much anymore for a reason. If the Doctors are even a tiny bit off or if the medicine is too much for my brain to handle, it can give me a stroke, seizure, paralysis and even kill me! I am going to make an appointment at the Cleveland Clinic to get a fourth opinion and hopefully, find a Doctor who has done more than four. Unfortunately, it is a shot in the dark if I will go to the Doctor who's most experienced because none of the Doctors' profiles say that they even perform this procedure and when I call, no one is able to help me. It just isn't done anymore except with cancer patients who are already dying and that is truly scary. For me, I am willing to take the chance but my parents are not and I don't blame them.
If your pump is in the cervical area and you don't mind me asking, who did yours and how many has he/she done? Also, if you know anybody who might be able to help, that would be so helpful as well. Thanks for your help and I hope you are doing well, Melissa
|