except *maybe* that it confirms that you are not totally crazy when your suspicions about what is wrong with your daughter are confirmed to be spot on.
Took KJ to the neuro today. Last time he saw her was September 8 when she collapsed on his floor and went to the hospital in an ambulance.
And right here, right now I want to thank Katie at Overflowing Brain(check my sidebar to go to her blog. She is one indestructible, strong woman and compared to what she has gone through, KJ's health issues are minor. Katie has kept it real, shared her medical journey including the bad Dr. experiences and it was from reading her blog that I regrouped and purposed that today's visit was going to result in answers or else.
I had my game plan on...dates and tests and results memorized(KJ wouldn't let me bring my wall calendar where I have everything written down...she is a 21 y/o and has her rep to protect-lol) and when the Dr. came into the exam room and asked how things were going, we told him. I quoted what he had told me when he diagnosed KJ with pseudo tumor cerebri, about the PROGRAMMABLE shunt she was SUPPOSED to get and about the 2 brief weeks of pain free/full vision and then the world fell apart again. How 2 weeks ago KJ went through 4 taps with the first 3 being dry taps, etc. and then asked the 64,000 dollar question...if she had a catheter in her spinal canal instead of a programmable shunt (that would only activate to drain spinal fluid if her pressure rose) and the catheter was draining her spinal fluid 24/7 regardless of pressure measurements , would that cause the same symptoms as too high pressure?
And then he tried to tell me that her catheter had a pressure valve in it...
Wrong. I have the op report to prove it.
Then I asked what would happen to the brain if her spinal pressure/fluid amount remained low due to the 24/7 draining of the catheter?
He said, "Nothing." (I will be researching that answer.)
I asked what was the next step.
He said, "Well you could overhydrate her and give her caffeine and that might help raise the pressure."
KJ and I chimed, "Did that---did not help."
He asked why the neurosurgeon didn't put in the programmable shunt and we told him that he said her ventricles in the brain were too small and he had to put in the lumbar shunt/catheter.
I asked for referrals to neurosurgeons in St. Louis 16 miles away and he gave me two names.
I called one of them(couldn't pronounce the other one's name) and their policy is that they don't accept private pay(no insurance) patients. The appointment scheduler asked what was going on and after I told her, she asked if she could put me on hold and when she came back, she said she had talked to the Dr.'s office manager and she said to have faxed all of KJ's medical records pertaining to the surgery, doctor visits, etc. and Dr. Rich will review them and call me to let me know if he can/can't accept her as a patient.
The plan now is that KJ sees the original neurosurgeon who put in the low back(lumbar) shunt on December 9 and I tell him what the neuro said about her pressure being too low with the continuous draining of the shunt and see if he will put in either a VP shunt(in the head) or a new type called a cisterna-atrial shunt that goes from the site where the spinal fluid is manufactured in her brain down to her heart to drain. It has shown results of less chance of blocking up and having to be replaced. It seems like the other two programmable shunts(low back and head) have to be replaced often. If he says he can't, then I'm faxing all her medical records to Dr. Rich and see if he will take her as a patient.
I had mixed emotions when we left the neuro today. Glad that we had answers to the questions and that my hunch about what was causing the problem panned out but realizing that we are back at one in our quest to get KJ fixed.
Thank you for all of your good thoughts and prayers for KJ.
We will get up and carry on again tomorrow.
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