Friday, October 3, 2008

Intracranial Hypertension

My pressure is HIGH, and I know it. While its not high enough to put me in the hospital, I am counting down the days til my neurologist appointment hoping I can make it without calling and asking for a spinal tap early.

Unfortunately I do not even know if he will approve a spinal tap with the chiari so it will probably take two phone calls to get the tap even ordered. I will give it another two weeks (or less if I feel really bad) and I will call the neurosurgeon back, maybe he will order it from the DMC and I won't have to worry about having it at one of the two hospitals I do not really trust at this time.

I so wish I knew specifically which problem was causing this so I could fix it or at the very least I could know what the next step is.

I feel like I am going crazy.

I m so glad we are working on getting me back in school because I think I need the distraction to help me make it through this mess. I am so worn out and just physically and mentally drained from this nonsense.


Sherry said...

Hi Charlotte,

I hope you don't mind, I found your blog the other day, and became a follower. I was googling images for PTC and ended up coming across the picture of your family on your blogspot. THought it was ironic. Anyway, it took me to your blogspot page. What were the changes of finding support in the image section, when I wasn't looking??

A little about myself: I'm a 33 yr old mother to four. Ages 14, 10, 6 and 4. I'm Very happily married. We live in Troy, Illinois. Just about 20 miles from Downtown St. Louis Mo. I was just diagnosed with PTC about 4 mo ago. I've had several spinal taps. And get extremely sick afterwards. But usually can function better afterwards and am ultimately glad I got the relief. I have wonderful doctors following my care. Whom are VERY proactive . Neurologist, Neuro-Opthamologist, normal opthmologist, INternal Medicine doctor, We are all on a first namne basis! lol I have other healh issues too. (Hypothyroidism, high blood pressure, fibromyalsia, Obesity.

You and I seem alot alike, If you need someone to lean on when times get toughm I can be an ear if ya let me! Could you please tell me more about Chiari. Someone briefly mentioned that they wondered if it was possible that I could have that. (I ignored that! I got enough going on! lol)

Anyway, I'd love to hear from you! Even have spinal tap tips for ya since I just got out of the hospital last week.

Taje care abd I'll pray that your head feels better!

Blessings soon will come your way! Have faith!

Charlotte said...

Sherry, sorry to learn of your PTC, I have had it diagnosed since 1998, hard to believe now. It was quite a blow at first since I knew NOTHING about it, but 10 years later at least I have some answers on this mystery. Chiari is a deformation that is common among PTC patients, as many as 40% of missed cases at the Mayo Clinic...mine was caught by a ssecond opinion after a botched shunt replacement.