Re: ptc and alternative therapies

Posted By Kathy Winner on September 29, 1998 at 13:51:23:

In Reply to: Re: ptc and alternative therapies posted by CCF Neuro[P] MD RPS on September 29, 1998 at 09:25:44:






: : Two new therapies to treat ptc have been recommended to us for our adolescent daughter. Octreotide injections 3 times per day have been recommended by an endocrinologist as a possible "resolution". Also, a tyramine-free diet was recommended by a neuro-opthamologist. Our daughter is not your typical ptc patient and has already been through the gamut of surgical interventions. Do you have experience with either of these treatments or know where we may obtain additional information regarding studies that may have been conducted. Any help you can provide will be greatly appreciated.
Dear Kathy:
If you could please describe the syndrome "ptc".  The general use of octreotide or somatostatin if in patients with metastic carcinoid and vasoactive intestinal peptide secreting tumors, pancreatic tumors,
gastrinoma and secretory diarrhea.  There are some off label uses such as Acromegaly, AIDs-associated secretory diarrhea, bleeding esophageal varices, breast cancer, cryptosporidiosis, Cushing's syndrome, insulinomas, small bowel fistulas, protgastrectomy dumping syndrome, chemotherapy-induced diarrhea, GVHD induced diarrhea and Zollinger-Ellison syndrom (syndrome).  These I am aware of and I don't recall any of these being given the name of "ptc".  I have asked my collegues and they have not heard of "ptc" syndrome.  If you define it for me I will get back to you.
Sincerely,
CCF Neurology:Pediatrics, MD  RPS
Sorry for my ignorance
Dear Kathy:
Sorry, but somehow your reply did not transfer.
CCF Neuro[Pediatrics] MD, RPS
Dear Doctor:
Excuse me for not making myself clear. PTC is pseudotumor cerebri. My husband and I understand Somatostatin is not a "traditional" treatment for pseudotumor but our daughter has received the "traditional" treatments - diamox, neptazane, lumbar shunt, ventricular shunt, optic nerve sheath fenestration, subtemporal decompression, and steroids. As a result of these interventions, she has developed major vision loss, Arnold-Chiari Malformation I, a syrinx, and now her adrenal glands are producing an insufficient amount of cortisol and she is taking meds to elevate her blood pressure. Medically, she continues to baffle the specialists and we are continually looking at alternatives as are her doctors. Any help you might give us as to your experiences at the Cleveland Clinic or where to search the medical literature will be greatly appreciated.