Questions posted in the
Neurology and Neurosurgery Forum have been answered by doctors from The Cleveland Clinic Foundation.
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Subject: Re: Neurofibromatosis and hormone replacement thearpy Topic Area:Posted by Christine Jenkins on May 04, 1999 at 11:41:45Topic Area: NeurofibromatosisDoes hormone replacement thearpy (i.e., Prempro) have any affect on tumor (neurofibroma) growth? I have noticed an incease of neurofibromas - as well as enlargement of existing neurofibromas, but am not sure whether or not to attribute it to the regular progression of the disorder or to the hrt.
Dear Sheila: I am sorry to hear that your neurofibromas are increasing in size. I really do not know of any data to suggest that sex steroids would influence the size or numbers of neurofibromas. In addition, I do not know of any studies suggesting that these are in anyway influenced by sex steroids. As most replacement steroids are designed to mimic the natural states of sex steriods or somewhat reduced in levels but still retaining the effect, I would doubt that a continuing of sex steriods would influence neurofibromas. The most likely situation is that the natural progression of the neurofibroma and the disease is occuring. If I find anything I will put a posting on the site. Sincerely, CCF Neuro[P] MD
Dear Sheila: :My name is Christine. I have NF-2 and have posted a response prior to this one. HRT and Neurofibromatosis is still questionable. I have used HRT in the past and experienced tumor growth acceleration first-hand. If you are having the same experiences, then I suggest stopping the Prempro before things get out of control. I believe that my use of hormones in the past has led me to where I am presently, which is facing major surgery for removal of a meningioma on my temporal lobe, tumors in the orbit of my left eye and optic nerve. If you "feel" like the growth acceleration is directly related to the HRT, then it probably is true. I know that the natural progression pertaining to my case was very slow up until I began using Estrace and Provera... then 6 months into the therapy, things started happening. Not slow, like before. Fast. So fast I couldn't keep up with the acceleration of old growth as opposed to the introduction of new. Later, I learned that tumors release hormone receptors, estrogen receptors to a lesser degree, progesterone receptors to a much greater degree. It appears that our tumors rely on the progesterone for existence. My advice on a patient-to-patient basis is to quit and keep a close watch on what is happening. Sincerely, Christine
Posted by CCF Neuro[P] MD, RPS on May 05, 1999 at 17:33:41 Dear Christine: We know that some, but not all meningiomas have estrogen receptors. Whether they are in fact induced to grow by the presence of estrogens varies from patient to patient. Most meningiomas are very slow growing, even in menstrating women (levels of hormones would be higher than on the replacement therapy levels). However, many neurologist and oncologist will take their patients with meningomas off replacement therapy as a precaution. You must have had one of the rare types that growth is influenced by estrogen. Fibromas are known to grow during pregnancy in some, but not all patients. Whether this is related to increased hormones of pregnancy is not fully understood. Since most fibromas grow slowly in women as well as men, it is not clear the influence of female sex hormones. But, again many neurologist take there patients off replacement therapy if fibroma growth changes with use. Since the benefits of replacement therapy is so great (Alzeheimer's incidence reduced, ovarian cancer, osteo, etc), each patient is taken individually. Sincerely, CCF Neuro MD
Posted by Christine on May 11, 1999 at 00:32:20 Dear CCF Neuro (P) MD, RPS: Thanks for the quick reply. My surgery date is May 20th at 7:00 AM. As it gets closer, I get more emotional. Being in the menopause makes matters worse. My mood swings are not normal, and the hot flashes seem to be hotter. I'll be okay. In reference to your mentioning "rare" ones, I believe it is because I have seen every MRI that's been done on me. The last one exposed it. I got a kick out of the technician. She told me not to move my left eye because there was a lot of emphasis placed on shooting my optic nerve. It wasn't hard for me because my left eye doesn't close, so the chair in the reflection mirror was my focal point. It worked... and now? Meningioma. That explains the pressure pain above my left eye. Two institutions of medicine have labeled my case "rare". Only one side of my face is affected. If there was more time, I'd get into the misdiagnosis of the century. Did I, or did I not have the Guillain Barre Syndrome when I was 18 years old? Let me ask you. If there is an undetected tumor (schwanoma or whatever) located mid-brain during childhood and growing with the normal growth patterns... could that tumor reach maturity, say at 18 years, and suddenly erupt, leak blood into the pons and the symptoms be confused with that of GBS? Numb feet, hands, total paralysis, double (sometimes triple) vision, etc? Does the vision problem even exist with GBS? I'd like to know. Thanks, Christine
Posted by CCF Neuro[P] MD, RPS on May 12, 1999 at 13:13:41 Dear Christine: In NF there is a strong association with tumors, different ones between NF-1 and NF-2. NF-2 is more associated with meningomas and acoustic neuromas (actually schwannomas) while NF-1 is more associated with gliomas, especially optic gliomas. Usually the low grade gliomas do not bleed, but this is always a possibilities. The meningomas have a tendency to bleed. If one bled in the correct position, it could cause paresthesias. An optic glioma could definitely cause double vision. If one had not seen many GBS patients and did not find the usual EMG pattern of decreasing amplitude with increasing firing, then I guess it is possible to have some confusion. Usually, GBS is so stereotypical with a definited EMG that it is hard to misdiagnose, but one never knows. There is a possibility of vision changes with GBS especially with the Miller-Fisher variant. I hope that this answers some of your questions. I hope your operation goes well. Sincerely, CCF Neuro[P] MD
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