I woke up this morning and climbed right into the shower. For some reason my thoughts went right to:
What was the real reason that they had to go through the top of my head for this skull base repair. I mean my Doc is one of the very few in the world who do the TONES surgery.
Is it because he had just transferred from his original hospital to my hospital? Was there equipment that his other hospital had that the hospital that did my surgery does not have? If that is the case why didn’t DrB say hey transfer your care over to my other hospital and we will do the surgery there.
What is the reason I had to go through a bi frontal craniotomy that has caused my complete life to change? Why do I still have these positional headaches and no one can tell me why other then yep it might be a low CSF pressure type headache?
Some times I wonder if I was the one case that they were using as why they need to do TONES surgery at their hospital. This is the reason they need to spend the money for the equipment. They already have the surgeon.
I am just so ticked off with being blind in my right eye, headaches all the time, oh they go away but I have to lay down for that to happen. I’m just sick and tired of it. I think the Headache clinic appointment the other day was the final straw. Yep, sounds like low CSF to me…
I am in the process of getting a PPO type of insurance and will be able to go anywhere I see fit to have doctors do what ever needs to get my headaches away.
I remember that before I had the craniotomy at our 1st appointment with Dr B he mentioned if I wanted a second opinion to go to x in Arizona and y in Northern California, z in timbucktoo. I am going to start researching these other doctors in other locations and I will be taking my medical record to these facilities until I can get some answers. I am just so done with living my life on the couch or with a headache. There has to be something that makes me fill better, somewhere.
Thanks for letting me vent, I just needed to get this off my chest. I have really big shoulders but sometimes it just feels great to let it all flow. If I want i could be telling this to my hubs. Accept he is there with me sees my pain and frustration, there is nothing he can do accept agree with me. I don’t want anyone to agree with me I just want to be ticked off for a little bit.
If anyone ever reads this, ask your doctor to see if TONES surgery is right for you. If not ask and make sure you understand why your anterior skull base repair can not be done with out having to do an open brain craniotomy. There are just too many complications that CAN happen. I’m not saying they will happen to you. But their is a chance.
For today I am just one ticked off, blind, post craniotomy, stumbling, bumbling, idiot who has a huge ship on her shoulder.