Tenacity update #2

[Guest guest]

I spent 3O minutes typing a letter only to lose it before sending it and now

I am tired and frustrated. So, this time, the note will be in factual

outline form.... sorry for the lack of fluff in the note.

1. I do have a type 1 Chiari Malformation

2. It is causing no compression either this time or in the CT Spine with CSF

Flow study that I had done last November

3. Dr. Milhorat oversees the center at Duke university that Dr. Fink

suggested. He is a very good doctor.

4. Because of the results of no syrinx (cyst) and no compression, the

surgery was cancelled.

5. I wound up allergic to the CT scan injection and have broken out in hives

head to toe. Because of this I am on IV steroids and antihistamines.

6 The test that needs to be done is a lumbar puncture.

7. This test cannot be performed until 24 hours after I get off of the

steroids and I have to have a migraine headache at the same time.

8. Dr. Milhorat said that he does have an idea of what is causing my

debilitating neurological condition but will have to wait until after the

spinal tap to give us any answers. He said that he doesn't believe in

getting a patient worked up when it is not necessary or clinically founded.

9. He send blood work off to look for rare disorders too.

10. A second CA 125 was run with the value coming in at 34 this time. The

highest norm is 35. Dr. Milhorat told me that I am admitted as a

neurological patient and he does not want to call in a consult for this

problem because that would just complicate things being that this is a neuro

floor that I am on. He strongly encourages me to get an ultrasound of the

abdomen when we get back to Charlotte. Because the results are back in the

normal range, he makes the above suggestions. Had it come in high again, he

might have suggested something else.

I think I have addressed all of the questions brought about. I'm not

looking for surgery or treatments just to have them. Heck, if anything it

feels like everything is back at square 0 with the exception of the fact

that I have clinical proof at to what this isn't: It isn't PD, it isn't PD+

syndrome, It isn't the type 1 chiari causing the problems. I'll try to get

back online and let you know what it is when I get some more answers. In

the mean time, pray for a migraine so I can have my spinal tap and get out

of here. The food and decor is awful.

Again, we thank you for all of your prayers and support.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

But for the Grace of God, Go I!

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