Yes, Yes, we worked everythin out, I knew we would but I really REALLY needed to vent the other day.
I have been a part of a PTC support group since my last MAJOR flare (after my post-op complications I felt very alone in the journey) Anyhow...
I know my problems are not mostly PTC related, I have done quite a bit of research on lots of it and with the diagnosis of the Chiari last year I started doing even more research....well I am seeing that its more the Chiari issues that I am dealing with, not a huge deal, its life....but my docs all wanted me to get a VP shunt placed last year and needless to say I was not looking very highly into it since its major brain surgery....don't ask why the potential of decompression scares me less, it doesn't make sense to me either.
Anyhoo...On our PTC support group recently we have had Several people get VP shunts, NONE have had truly positive results. One has been hospitalized for a small bowel obstruction (a mere 3 weeks post-op, they claim is unrelated) a second one wound up with a major infection and was basically told to stay away from everything for another month, and a 3rd wound up in more pain from the shunt, headaches worse than before and basically just majorly regretted these decisions.
My docs said unless it started affecting my eyesight they would not consider a VP at this time, the risk outweighed the potential benefits....I was questioning that since I have had very little quality of life ever since the flare in 2007 and before....now, Since none of these people had major vision problems and all had the VP shunt put in with all of its complications, I am seriously grateful for MY doctors who said NO, its not worth the risk at this time.
Ya, I will get sick over and over again and it will cycle, I get about 2 good days a week or so and try to do SOMETHING every day, even if its just to go out, and when my body says enough, I rest and recover....its a cycle I have been living with for many years. I would rather get sick over and over again and have a few good days here and there then suffer not knowing when or where I was going to get sick because of the shunt. I know their failure rates and they are HIGH. If it starts to REALLY affect my vision again, I may consider a shunt, but I will literally have to be going blind as fast as I was when I had my Optic Nerve Sheath Fenestration done in 1998 to consider the VP shunt.
Ok, so now you ask why do I not feel at all stressed about a possible decompression surgery, much much riskier than a shunt, much much more painful, and overall just a harder surgery? Well for some reason, I know its not the time for it right now, and I know the time is coming, I am having drop attacks at least once or twice a week, I still can't navigate the stairs, my balance is still way off, and I am having problems swallowing my meds including the CHEWABLES. I know when the time is right, I will have complete peace over it, like I did when I had my ONSF and shunt put IN, I had a weird sense about the revision, something just seemed very uhm....lets just say I knew in December that something more was goin to happen and the surgery wasn't even scheduled til January 2nd for February 1st.
I am glad God did not tell me what was going to happen, I wouldn't have gone through with it and I would have never found out about the Chiari, probably making it much worse in the process since the shunt would have continued draining even at its slow pace.
I know God protected me then and he holds me now through this and will protect me in the future as we go through this battle....it WILL be ok, GOd is in control.