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Sat, Oct 5 10:48am · TARLOV CYST in Chronic Pain

The big problem with the medical community and Tarlov cysts is that close to 80% of folks have them, and they are asymptomatic for them. The few percent of us whose Tarlov cysts are symptomatic are disregarded because very few neuroradiologists have the skill set and expertise to notate on your MRI report the number of cysts, dimensions of each cyst, fluid volume of each cyst, as well as the exact location of each cyst. I just had my pain specialist order a MRI requesting all of that information. I paid $550.00 for it. The report came back with not one of those requests notated. The neuroradiologist argued that the cysts are benign, incidental findings and it was ludicrous to ask in the first place. My doctor called the radiologist and found out he just didn't know how. I was refunded all my money. Now, I'm looking for a neuroradiologist closer to Florida to send the MRI disc to. Perhaps John Hopkins in Jacksonville. I have done hours of research, purchased medical journal articles, etc. in order to become more educated to advocate for myself. Please do not give up. If you do, you've lost. Keep hope alive!
I'll be happy to share what I've learned. Just feel free to ask.

Sat, Oct 5 10:24am · Perineural or Tarlov cysts in Chronic Pain

Hi, I read your post and feel such kinship with you. I, too, have had symptomatic Tarlov cysts for 17 years. My bowels still work, barely, and that has escalated in the last year. My bladder is the same. I'm bedridden or a wheelchair now. The pain is excruciating and the migraines severe. I know about Dr. Fiegenbaum and Dr. Schrot. I've sent my paperwork to Dallas waiting for a phone consult with Dr. Fiegenbaum.
Hearing your story made me feel a couple of ways; 1. I wish I could snap my fingers and restore your and my health.
2. You have a friend

Fri, Oct 4 5:47pm · TARLOV CYST in Chronic Pain

Rudolph J. Schrot, MD Sacramento, California

Fri, Oct 4 5:43pm · TARLOV CYST in Chronic Pain

Two doctors in United States are specialists in the area of Tarlov Cyst Disease. Dr. Frank Fiegenbaum, Dallas Texas. And another in Sacramento, California. Sorry, I don't have his name right this minute. Google, 'The Tarlov Cyst foundation.' Plenty of info on Google. I have had symptomatic Tarlov cysts for 17 years. I'm currently working on getting a telephone consult with Dr. Fiegenbaum. Hope this is helpful. I'd like to talk more.