Super Science Week: Let's Learn About IIH

I got out of the hospital last Friday. Only 4 days in ICU, and one day in a regular unit then home, home, home. I honestly cried when my husband walked in to get me Friday at about 11:00am.
I feel... um... well, tired, achey, nervous, scared, stiff and sore. That about covers it all.
It seems my doctor, Dr. Peter Ventura of Tooele, Utah is quite the bulldog. He kept shakin' until the pieces started coming together. I love that kind of doctor, he wants to know "why".
First, before starting the operation they kept me awake to do a spinal tap and to monitor the pressure in my spinal fluid because the pressure changes when you go to sleep.
Then Dr. Ventura didn't just fix the obvious leak, he says he remembers that in my initial MRI that I had fluid in one of my upper sinuses. Initially he thought it just spilled over from the hole he found at the top of my nose, but figured since he was up there he'd patch the top of the sinus also, just to cover all bases. So he took a skin graft from my stomach, used glue made from blood taken from punctures on both my ankles. He finished up with a "rhino rocket" packing and out I went from surgery.
Now the hard part; every hour the nurse had to drain 10ml of spinal fluid from my back. I could feel every molecule being pulled out and as they were pulled out, my headache got worse and worse. Thanks for blissful morphine induced sleep!
One day, maybe Tues or Wed, the doctor tells me the problem with my spinal fluid pressure. He says most people are under 20 (whatever the units are, like cm/H2O maybe?) and actually most of those people are 5-10. I, however, was at 30! crap. With that high of pressure I am in serious danger of losing my eyesight. The pressure on the optic nerve as it leaves the eye, going to the brain can lead to permanent damage. So Dr. Ventura sends in an eye specialists to see me immediately in the hospital. Good news, so far no noticable damage!
The next day Dr. says he has been talking to someone and/or researching and there is a drug now, a diruetic, that reduces the amount of CSF and therefore reduces pressure: Diamox. He puts me on this immediately and from Wed afternoon to Thur afternoon they only monitor my spinal pressure without withdrawing any liquid. It stays down around 18! With that, out came spinal tap and out of ICU and to a regular hospital bed. Friday he unpacks the "rhino rocket" and I go home.

But for some light reading check out: www.ihrfoundation.org Click on "What is it" under the title and go to symptoms. Under "other symptoms" it mentions:

"spinal fluid leakage from the nose is the result of high intercranial pressure erosion of the bone separating the skull from the nasal cavity". Hmm, sounds familiar.

Also, for women, it seems that weight loss often helps relieve the cranial pressure problem, not always but often.
I see Dr. Ventura again tomorrow and maybe find out where I go from here besides to Weight Watchers!

I will not be out in public for the next few weeks, BUT...

I will be selling from home and from over the internet!
Read my sad saga:

For those of you who have known me for over 12 years, you may remember my horrible, very bad year of 1997. It started in February with a continually dripping nose - ok, not exactly dripping, more like I had literally sprung a leak! Doctor after doctor kept saying it was allergies and try this and try that. I DON'T HAVE ALLERGIES - NONE, never have!
Well then one month later, in March, I find a lump in my breast and off to the races I go with breast cancer. Surgery at the end of March. Radiation starting in April, ending the first week of June.
But in the mean-time a great doctor decides to test the liquid coming out of my nose and eureka! it is Cerebral Spinal Fluid! "IT'S WHAT?" I said. "My brain juice is dripping out of a hole in my nose!"
Well with all the breast cancer stuff I was going through, we decided to postpone the patching of my nose until beginning of July. They took a patch of skin from inside my right nostril, shoved it up my left nostril and then to make sure the patch takes and doesn't spring a leak again, I had to have my spinal fluid drained down to very low levels and so I lay quietly in a hospital bed for 4 days with a horrendous migraine headache! But, it all worked and by mid-August I was myself again.

That was 12 years ago.

But last Monday, Labor day, I woke up to moisture on my upper lip, didn't think much of it (maybe I drooled a bit?) but as my husband and I were walking up the walk to a restaurant, a giant stream of liquid poured embarrassingly from my left nostril. We were both horrified to say the least. The dripping of liquid got worse each day so today, the 10th, I spent the entire day talking to doctors, enduring scopes pushed up my nose, having MRI and CT scans.

YES, I have sprung a leak AGAIN! WHY ME? Sure it can be fixed and I can most likely get the surgery within the next week but I KNOW WHAT IS COMING UP! The 4-day migraine from HELL!

Anyway now that everyone is bored to tears, that means:

No Bowenwright booth at the Avenues Street Fair this Saturday the 12th!

No booth at the People's Market for probably the rest of September!


BUT...

I will spend all this time away from People I love loading stuff on to Ebay and Etsy!

AND....

I can still mail out purchases from email orders! You can pay by check or paypal!

I EVEN PAY THE POSTAGE!
So keep in touch, I'm just vacant for a bit whilst I deal with "CSF Rhinorrhea"

It's Labor Day - the End of Summer 2009? I Think Not!

Saturday, 12th of Sept.

on 9th Avenue between D and I streets!
from 9:00am to 6:00pm
see: www.slc-avenues.org
for more details of events!

I will be between F and G avenues on the north side of the street,
11 positions east of "F'' street.
_____________________________________________
So, was it windy yesterday or was I just having a very BAD hair day?

I have to thank all those who braved the wind to come and be apart of the People's Market yesterday. Those of us who are vendors were exhausted by the end of the Market from pulling down tents, chasing blowing merchandise and produce, and holding onto table legs! I was so tired when I got home. I felt I had run a 10 mile marathon!
Several visitors dared say they "liked" the wind because it kept the air from being so sultry! Get me hot still air any day!

By the end of the day my hair was in dredlocks,
My eyes were literally blown tearless - dry to the bone
and my skin was like an old used baseball mitt!
my tongue so parched my lips stuck to my teeth as I tried to talk.
And don't say I look like that everyday because I'm old,
I promise, It was a very windy day!

Dani, your Harley ankle bracelet is ready. I'll be there next Sunday or I can mail it to you or you can come to the "Salt Lake Avenues Street Fair" remember:

Saturday, 12th of Sept.

on 9th Avenue between D and I streets!
from 9:00am to 6:00pm
see: www.slc-avenues.org
for more details of events!