Hi DR. Diane, thank you for replying to my post. Wow, I was so floored when i read you’re post, and you’re ref to nutcracker syndrome. I have been sick for so many yrs, to many dx to count. Married to a family practice DR, who has tried his best to help me through this journey…I’ve had many DX’s over the yrs; Chiari-surgery-2002, csf leak, lyme, autonomic, narcolepsey, mastioditis- surgery-1992, and more… I’ve had pain in the juglar veins in my neck for yrs, which know DR has tested or even mention could be contributing to my failing health. I want to try you’re protocol, but am reluctant, cuz my hubby thinks i have a csf leak, as per readings from an ICP monitor, which was mostly in negative numbers during the duration of 5 days and thinks diamox might make symptoms worse…. I have found renewed hope since finding you’re site, Thank you so much:) Big Hugs,letgetwell.
Hi Letsgetwell, OK, my friend, you may be able to help so many others while you help yourself! Please see page 29, second paragraph of the paperback, “Ironically, pressure on (and likely ischemia of) these cranial nerves due to external communicating hydrocephalus, will result in symptoms of a spinal CSF leak, or low intracranial pressure. The possibility of cranial nerve syndrome must be carefully evaluated, or the physician risks exacerbation of the condition.” I have seen SO MANY patients whose neuros insist upon an LP, but if the ICP is highest above the brain, it can make us “cork” (induce a horrible Chiari), and little or no CSF comes out! In one of my videos, I mention that a trial of Diamox, at worse case, would lower your pressure, if it is low, and you’ll need to lie down, drink lots of water, maybe with sea salt and glucose, for about 3 hours. The effects of Diamox don’t last very long, and you replace your CSF rapidly. I’ll bet my left arm (my “good” arm), that you have external communicating hydrocephalus, my friend. CAN YOU HELP US? I am collecting MRI’s (head and neck) before and/or after any surgeries, and looking at MRV’s of the head and neck. Would you be able to come up with those for me? I’ll have a few other questions for you that we can do behind the scenes. Sound good? I’m close to publishing this, and the more images we have, the more it tells the story for us. We need the RAW DATA (not the radiologist’s report), though. Please contact me through my website — you can use “volunteers@Prettyill.com” for now, OK? I have a cracker-jack techno wizard to help with those images (his wife is affected), and we will maintain your anonymity. If you are symptomatic, can you get a head and neck MRV? THAT is how we can put it all together (again, RAW DATA). We would all be so grateful. Nutcracker — I hear about this mainly in the M.S. conventions, because the EDS conventions don’t yet have speakers focusing on veins yet (I’m trying to change that). Our veins are affected everywhere, my friend, and if you do indeed have NCS, treating it is a must. It sounds like it may not be your issue. If I could see your MRI’s and MRV’s, I believe I can figure it out for you. Cool? Please let me know, and please spread the word that I am collecting MRV’s and MRI’s for all of us, surgery or no surgery. I’d be so grateful. Big hug, Diana