Wow!

A lot has happened in the last little while and I think I will just start writing about it and see how far I get. :)

A little while ago I mentioned that I had received a book from my aunt about a lady that I suspected has one of the same disorders that I have--Intracranial Hypertension, also known as pseudo-tumor cerebri. Since that time I have actually talked to her by phone a couple times and we were able to share our stories. Her's is amazing!

In the course of the conversation, she told me that she sees the top neuro-surgeon at the UCLA Medical Center and asked if I could come and see her doctor there. She has a unique shunt that could possibly eliminate the headaches that I still have all the time. She has not had headache issues since having this particular shunt. Initially we have been very excited about this, but now the logistics of it all are quite overwhelming to me. I can't deal with a lot of things at the same time, and with the stress of Pizza Fresco closing, handling things at the office and the normal craziness of life, I am having a hard time processing all this. I decided that I need to start writing about this. Sometimes if I put it in writing I can think through it just a little more clearly and hopefully it won't seem quite as daunting.

Here are the challenges that we are contemplating.

1. Are my headaches truly caused by the shunt not functioning effectively? Could it possibly be something else--the Chiari side effects? The continualy changing weather? Or could I possibly not be able to get over the headaches & related issues because of all of the above?

2. What happens if I have this surgery in California and need multiple revisions like before? Driving to Milwaukee was more doable than flying to California repeatedly.

3. If I have a new & different shunt put in, will the neurosurgeon locally decline seeing me again for adjustments like before? Would any setting changes always have to be done in California?

4. Am I physically ready for another big surgery? Mentally I would dive into it in a heartbeat if I knew the above questions wouldn't be an issue. I would do nearly anything to regain my health and eliminate the headaches and related symptoms!

5. We are not at all familiar with LA, and not comfortable trying to get around down there on our own. The logistics of flying in there, getting to the UCLA campus, navigating through that place that I would guess is huge and finding my way to the doctor is terrifying!

6. When I made the first call to the required referral nurse, I got the huge run around. She absolutely would not consider scheduling an appointment with this particular doctor although that doctor told the lady I talked to that he would like to see me. First she wanted me to see a chiari doctor. After I convinced her that I didn't need that, she then went to another doc that handles IH, then a shunt doc and finally we ended the conversation with seeing a neurologist and he would determine if I could see this particular neurosurgeon. Then we went around for a while about the requirements I needed to submit before scheduling the appointment with the neurologist and I don't have them. So I will need to do some leg work to see if I can get what they want.

7. Of course, there are the financial issues. I know that this would require a minimum of two trips down there if we were able to get them to agree to make an appointment with the NS after seeing the neurologist rather than waiting until after the first appointment to schedule the next. Then I am sure there is a waiting list to get the surgery scheduled.

8. Finally, I just don't quite know when to do this--if I should! I so don't want to miss anything more in my kids' life and the next several months have so many things coming up! Which brings me back to being overhwhelmed.

We have wondered if it would be worth my time to go to an area where the barometric pressure doesn't bounce like a ball for a week or two to see how I do. That may answer the question about the shunt not working effectively or the weather causing the problem. Kyle emailed a couple weather forcasters and they suggested anywhere in southern California through to Phoenix as an area that has little barometric pressure changes. Another trip. . .

So a lot of decisions and issues to consider. We are praying the the Lord will guide us through this and make our path clear. We love the prospect of me getting much better, yet realistically know that it may not be possible.