Tonsillar Herniation about .5cm, elevated CSF pressure 26cm

[achyhead8]

Hi everyone,

It's been awhile since I got in here. I just went for a LP two weeks ago. I just obtained my report and just came home from my neuro. My headache is getting really awful, making me feeling nauseous, aching facial bones around my eyes and sharp pain in my right ear, shortness in breathing, and feeling achy on my back. What makes it worst is that my memory seems to be failing and on few occasions, I could hardly remember my passwords, etc, which didn't once happened to me before. My memory was fantastic before this I dare say. And I phased out a lot when I was in meetings or talking with people. When I asked my neuro about Chiari, he just dismissed it by saying it's just about half a cm and it's not significant. And further said that if they get people of the same herniation, they may not have headaches or any symptoms at all. And my LP showed that I have elevated opening CSF pressure of 26cm. But again, he said that it's not high enough to be categorized into Intracranial Hypertension (IH), because IH's pressure should be around 30-40 and above. But I read everywhere together with all medical journals, it's said that 26cm is considered IH for a normal young female, who is not overweight/obese. Please help me!!! I'm going crazy here with the pain. But my neuro has prescribed me with Diamox for the increased pressure to see if it helps with the headache but dared not say that I've IH. Is it because I've read too much that I'm imagining things as in symptoms or am I really in a bad shape? But it sounds as if I'm making things up with his dismissive comments given by my neuro...

[MicheleTxRN]

ALSO..obtain your MRI report and see what the measurement is, if you don't already know. One NS I saw misread my report..it stated:

1. 5 mm cerebellular ectopia. Borderline Chiari 1 Malformation.
2. No other significant findings.

This NS read it as a 1.5 mm herniation...not 5 mm. Sometimes I think their eyes are skewed...also..the 3rd NS i saw found an arachnoid cyst on my cerebellum that no one else noted.  

Get informed...you are your own best advocate. Let us know if we can help.

[MicheleTxRN]

Sounds like possibly PTC..I had this ruled out, but read all of the symptoms and CSF parameters. I knew just from symptoms that there was more going on in my head than the PTC. Caution about Diamox...if you are experiencing dizziness...it can get worse. The sad thing is that most all of the meds we can take increase dizziness. The Paleo Diet has been noted by Dr. Oro as a brain healthy way of eating..weight loss, increased B12, D3 and fish oil all are helpful. I would suggest another opinion. It's taken me 7 Drs. since August to finallly find help.   Good Luck to you!

[alimcat]

Yeah sounds like the same story I have lived and read a million times over. Every day we wake in agonizing pain, no one believes you, (unless they are the ones taking care for you when it gets so bad you can't do for yourself), yet they know nothing about it, whether it a doctor with out of date info or your sister who never bothered to read up on it, you think to yourself is this the rest of my life, especially those of very young ages. And will it ever end, will I ever wake up feeling like I can spring out of bed, like people won't judge me if I don't force myself to keep up with normal people. This is the life we face everyday, and the physical pain takes a toll mentally on us. How could it not when you never feel good, even with pain killers, or headache pills, or whatever it is you are taking to make it bare able. God bless us all, let us just stNd our ground and keep trying to push these doctors into really wanting to learn about our conditions. Just don't give up, fight the good fight!! God bless you both!! :-) Selma helped me find mine believe it or not, a little angel sent from God. Thank you again Selma.

[achyhead8]

Hi Selma,

Thank you so much for your reply! Yes, it's really frustrating that the neuro can't do anything. He even asked me to go back to my GP to check on my shortness of breath/ hardness in breathing. It's rather sad that it's not easy for me to switch drs here in NZ and it's already super hard for me to get a referral to my current neuro. I would thought my current neuro would be well informed about all the diseases in the field of neuro since he's a distinction holder in his med/specialist degree. I can't possibly tell you how frustrated it is as I'm trying to really focus and work on my thesis and now, my time is spent on how to make sure my pain is reduced or at least, I try, and do more research on the Internet on my symptoms instead of researching for my studies. It's such ashamed.

Thank you so much, Selma! I hope yours is better and recovered. Take care and have a good day!

[selmaS]

  Hi...the issue is not u or what u may have it is the medical profession and the way these conditions r taught to young drs...it is a light breeze over and old out dated info..which for us is the worst...since we will get a dr that believes what is in the book and not right in front of him.....

U need to find a dr that has his/her whole practice that revolves around chiari and related conditions like IH...EDS...etc....

  Too many of us have had drs treat us like this that we refer this to
"the Royal Chiari Run Around"....getting dismissed...over looked...pushed off to another dr...given meds to band aid the problem instead of them investigating to find the dx is what we all have been thru until we found the right dr.

  Have u looked at the list of Drs on here?The list is compiled by the members of their drs names...u do have to research all drs on the list to find the one that is right for u...this list is NOT a referral, just a means to make ur research a bit easier : )
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   "selma"