December 2, 2016 at 2:03 pm #1060KellParticipant
I don’t want to ramble, and will try to be concise but comprehensive. I’ve had myriad of issues for year. Am now 49, disability, with worsening physical health, and even less help from Dr’s. Optic: blurred, dbl/trpl occasionally, swelling after laying down, visual field temporal and top loss left eye, over year increase cup/disc ratio as well as pressure (hit my 3 strikes w/ eye Dr, referred to eye specailist) have had major fainting, vomiting, headache over past couple years, added ear ringing 90% of time now, pounding when I bend over, pass out on the loo. etc, major confusion, at times cannot make my legs work. I have mutliple tarlovs sacrum to lower cervical spine (Dr’s don’t seem to care about them or think they have anything to do with my lack of bladder control or pelvic sensation). Neck injuries (2) no surgeries, lots of PT, total hip replacement-lot’s of bone edema w/ no impact reason, shoulder reconstruction (all right side). I had most recent MRI/MRA of head/ neck, and everything is ‘unremarkable’. (as with prior studies, where they missed a nickle sized cyst in my throat, that I walked around with for 2 years telling them I felt like I had a wad of gum in my throat-they said I had heartburn and apnea-VPAP machine suffocated me by blowing it in and blocking my airway, still nothing from ANY dr until it could be seen when I opened my mouth-they even did upper endoscopy-and didn’t check my throat before pulling my tongue back-and the cyst) So tired, so sick all the time, pain is a way of life, not something new. But the confusion I experience, literally, is too much now. They are missing, a lot, from what I can tell. My eye dr says I need to see a neurologist, but my fam phys is off for medical leave, he had heart surg won’t be back til mid Jan. I can’t stand to do dishes or cook, for more than 10 min at a time, the flank pain up to top of my head is too much and I will black out if I push too long. Anyway, sorry, I can’t think clear enough to make this cohesive. My body goes from 94 to 100, my BP goes from 60/40 up to 180/100 and back down in less than an hour. I feel like someone has poured acid inside my spine and now in my head. I’ve spent years like this, waiting until someone says, OH, by the way, you should have told us you hurt (ie, my initial disc herniation in 1995 C5-6) PT, and most recently 2012 was told the damage is done, nothing to do but stronger and longer acting pain meds. Not showing that portion of my neck on this MRI, I guess I need advice on how to speak to my physician, to the next new Dr, about the new stuff going on in addition to the other stuff that most all have just shrugged and said, Ok, so you hurt. My TSH was elevated in 2014 and have been on levo since, but things just keep getting worse and worse. I thank you, anyone, who takes the time to try to understand this! Every aspect of what little life I have left is just consumed now with this head stuff on top of all the other stuff. :/ I believe, personally, that my pituitary, optic nerves are affected, as well as the bas.ton, all have something to do with what is affecting my head and my body. Any advice, help, etc is most definitely greatly appreciated!
kellDecember 5, 2016 at 7:58 pm #6046BarbaraParticipant
I attach an annotated shot of your MRI. The left shot has something that I haven’t noticed before, is it a vessel or what, I don’t know. In the right shot, the ‘sagittal’ one, I’ve seen the abnormal features of your MRI before, most of them are shown in Dr Diana’s ‘The Driscoll Theory’ and are fairly common amongst those who suffer similar symptoms to yourself and post on this website.
Basically there’s excess CSF fluid in your skull. It could be caused by your low-lying cerebellar tonsils acting as a ‘bung’. Warning – do not let them do a lumbar puncture to check this, as this can make things much worse and give a false-negative result. If they want to check it, tell them to use a non-invasive method (they do exist!) Many of us are on Diamox to reduce the pressure this extra CSF exerts on the soft tissues. It compresses other structures, like the pituitary, leading to reduced function, or malfunction.
We can all empathise with your suffering and can share what we have found helps. I have the aching body, where the pain get’s worse the longer I stand too, so basically your body’s telling you not to remain standing too long.
I have had to find easier ways of doing my daily tasks, some people refer to it as ‘working smarter’. I have several other posts you might find useful if I get time I’ll sort out the links, if not just do a search on any terms in search box above.December 11, 2016 at 10:52 am #6048Dr. DianaKeymaster
Kell, Your flattened pituitary looks so much like mine did with high intracranial pressure! Barb, your evaluation is great, as always. It sounds like you have symptoms of high intracranial pressure so common in many of us. Is anyone helping you with that? Have you tried Diamox yet? Tons of information on that in The Driscoll Theory. Do you have a copy of the book, or do you need one? Hang in, my friend.
- You must be logged in to reply to this topic.