January 29, 2014 at 3:35 pm #4823sickandtiredParticipant
Ok. Now I just feel crazy. I feel like I am trying to diagnose and treat my daughter’s health problems and it is stressing me out!
After researching online for hours and hours, it seems that instead of high pressure in her head, I am starting to think that my daughter has LOW pressure (intracranial hypotension). I feel like she really could have a spontaneous low pressure, low csf volume headache, due to a csf leak. She and I distinctly remember how she used to constantly drip clear fluid from her nose when all of this started 3 years ago.
Her Cine MRI is 2 days away. My question is this: Isn’t the Driscoll Theory about HIGH pressure in the head due to the external communicating hydrocephalus? That is why the Diamox works, as it is a special type of diuretic. (right?) So if my daughter has LOW pressure might that explain why the Diamox is not working?
Am I completely off base here? She has been diagnosed with Chronic Daily Headache by the neurologist, but I just read about the use of epidural blood patches for spontaneous or idiopathic csf leaks. ???? This sounds like a possibility. I hope that the Cine MRI is capable of detecting a csf leak.
Anyone have any input about this suggestion?January 29, 2014 at 6:04 pm #4825BarbaraParticipant
Thanks Barabara for all the info. If you have all the Dx for CCI, Chiari, etc. are you wanting to have a decompression and stabilization,IF you could get National Health to pay for it? Did you go to TCI in NY for your imaging? Would you/are you considering paying for the surgery out of pocket? I can’t imagaine living in the neck brace 24/7 as a viable way to live if there is something out there that can help this?
The Chiari Institute (TCI) only recommended fixation surgery, as my cerebellar tonsils were only low-lying and it was thought the fixation itself would resolve the issues. If I could afford to go to TCI, I’d let them do the fixation but unless I sold my house I can’t afford it. I’ve had no joy getting it done on the NHS, no, nobody seems to want to do it, so I’m stuck in the collar. It being a very dangerous and specialised operation, TCI has a very good survival/recovery record, whereas we don’t have that same expertise (or success) in the UK.
I went to the Manhasset Imaging Centre for my radiology but it was Dr Bolognese, Dr Nishikawa and Dr Milhorat’s team at TCI/Northshore Hospital who confirmed the Craniocervical Instability. I paid for a procedure called an Invasive Cervical Traction but I wouldn’t recommend it. I think the anomally can be spotted on Neutral/Flex/Ext MRI’s using the method described in the paper on this website.
(UK)January 29, 2014 at 8:23 pm #4827ourfullhouseParticipant
Argh NHS! When I lived there as a teen I desperately needed my tonsils out and waited and waited on “the list” to get mine done. My dad finally conceded I needed it sooner than later and we went to a private doctor and I had the surgery within a few weeks. I have no idea how much that cost my parents. I was 17 at the time and thought that like in the US when you get your tonsils out you get popsicles, flavored jell-o, etc. Not in the UK. Ha. First meal I was given was dry toast and hot tea. OUCH.January 29, 2014 at 8:58 pm #4828Dr. DianaKeymaster
Hi Sick and Tired, I understand your frustration! The symptoms of both high and low ICP are similar, and unfortunately, we are prone to both. Generally, from what patients have told me (there are a lot of Facebook groups dealing with this), most of us have high pressure, but because the pressure is high and the dura is weak, we can then LEAK, and suffer from LOW ICP. If the leak is repaired, then the patient usually returns to HIGH ICP. Crazy, huh? Before jumping to leaks as the cause of symptoms, I usually like to be sure Diamox is being prescribed and monitored correctly. I’ve seen every mistake in the book when doctors prescribe this. Diamox is something that most eye doctors excel with (especially optometrists, who don’t perform surgery — we handle much of the medicines, the surgeons — ophthalmologists — prefer to handle surgery). I have a CSF leak out of my nose, but still need to reduce my pressure. If the leak is in the spine, then the symptoms of LOW pressure are more of a problem. Sometimes they are most evident when the patient becomes vertical — but not always. Some day, our care, diagnosis and treatment will appear barbaric and archaic. We’re still working on improving the science, though… Ugh.January 29, 2014 at 9:36 pm #4829sickandtiredParticipant
Thank you for your quick reply. I am hoping that the MRI sheds some light on the situation. Also, I will check with my daughter’s pediatrician about the Diamox. He was supposed to be reading up on it because he wasn’t familiar with using it that way. Maybe he can change her dosages.
Thank you!February 11, 2014 at 12:49 pm #4862Breezys momParticipant
I believe that my daughter has intracranial hypertension as well as hemicrania continua (HC). I just found an article online that stated a belief that HC is a sign of intracranial hypertension. What are you thoughts on this? (still trying to get diagnoses for my daughter by the way!)
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