Friday, April 24, 2015

Here we go again


  I woke up with a headache and some other stuff  that I will explain. It is a slow going morning for me. Please excuse any typos I miss. Let`s see. Where to begin?

   I went to my GP for my three month diabetes check up. I told him what was going on with my head. Long story short, he poo pooed me and sent me on my way. I had a appointment with my neuro to review my MRI but that never happened. They had to cancel the whole days appointment cause the computers were down. They would call me back to reschedule. They never called. So I called my GP asking if he would find me a referral like he offered.  It took him a couple days but his assistant called to say he found somebody. He was sending me to a headache and pain clinic an hour away. I was a bit livid. I tell you I think I need to see a neuro but you send me to a migraine doctor. I grabbed the phone and decided I was going to take the bull by the horns. I called my ear surgeon`s office in new haven. I lied to get a appointment. Unless you say that your appointment has to do with ears, they wont give you a appointment. So I said it was my Meneire`s disease. I got right in two days later.  I am so glad I did that!

  I told him what was going on. How the pain progressed. Then I just spit it out about the leak. I waited for him to poo poo me too. He didnt. He looked at my MRI and said my left mastoid is full of fluid. My left nostril is inflamed a bit from the drip of CSF (Cerebral Spinal Fluid). I have no infections in my ears so he knows it is CSF. Just like before, he said. I have to have surgery right away. He is worried I will get meningitis. He said that he has written two articles for medical journals and that Yale is doing a research study right now about what is going on with me. I have a csf leak of the temporal bone. He will start with a mastoid (behind the ear) approach but he could have to go to the front by my temple. Hope not!

  We have to find out why I keep springing a leak. I had a leak on my right side. And now on my left. He also suspects that they will have to go up into my nose to see if I cracked my sinus cavity also. They will be able to patch all this at the same time.  I go back to Yale this Tuesday to have a Cat Scan done. Then we will meet at his office after to review and to schedule surgery. See, he is a ear dr. But he is also a super hero in skull base surgery, Dr John Kveton.  He feels that I have what I figured out a month ago, Intracranial Hypertension. I told him about all the problems with the different neuros in our area. He did say that the Headache/Pain clinic is a very good one and they could help. He said that I have to have a spinal tap sooner rather then later (YUCK!) because once he seals me up, the pressure in my head will build to the point that I will just spring another leak. He is going to hook me up with a neuro at Yale.

  I actually shook his hand. He understood. To be THIS sick and have Doctors tell you it is just a headache. You have a sinus infection. Take this pill, it will go away. Someone listened to me. He believed me. He said all the things that were wrong with me were right. I let him speak because I wanted to hear what he thought. He said everything I concluded myself. We celebrated with pizza before we drove home. Only sick people that get a correct diagnosis would understand the celebration.
    I dont really blame my GP. He is a endocrinologist and he stopped me at one point and said it was above his pay grade. LOL I am glad he didnt just dismiss me outright. Wait till I have to go in for a physical before the surgery. I bet he will be shocked he was so wrong. But I still really like him as a Dr.

So today sucks because I am leaky. It is probably the weather. I have been eating low sodium (1000-1500mg) since before Easter. That means I gave up soda also. There is a long list of no foods that I avoid because they make the pressure in my head worse. Once I see a neuro, they will get me on some meds to control it. Between meds, tight sodium control, and weight loss...i should be good. There is a possiblity that I may have to have a shunt in the future but I want to avoid that at all costs. I am not too keen on gastric bypass surgery (as many of you know) but if I have to do it, I will. This will not kill me in itself. But I could go blind in one or both eyes. I could have complications from thee shunts. I could get more leaks. I have to be more proactive then ever before.

 I have some errands to do today. Even though I feel like crap, the show must go on. I will keep you all informed.


  1. I'm glad someone finally LISTENED!!!

  2. I know! I am overjoyed to know that I am gonna get some help.