Thursday, April 30, 2015
I should have posted sooner but my brain needed a rest. The news is not good. I will definitely need surgery on my left temporal bone through my mastoid. The mastoid is full of fluid. Brain fluid. They also think I have a crack in my sinuses. I have to go back to have a nuclear medicine scan for them to detect that. I have been told by two experts that I probably have the IH. My ear dr got three doctors in the Dept of neurology at Yale to take me on. They are supposed to call today. The nose Dr called me today to tell me about the sinus scan and she said she will push whoever to get a call to me asap. I dislike the letters ASAP. On the one hand it is good, you are being taken seriously. On the other hand, holy crap.
Two surgeries. They cant do them at the same time. The sinus surgery will require a 3-4 day stay in the hospital. They have to keep your head pressure down so that the seal can cure. Sounds delicious.
My head is killing me today and my eyesight sucks so i will leave you to this. I will report back later.
Friday, April 24, 2015
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.
Thursday, April 16, 2015
|CT College Arboretum|
I was all geared up to go to the neurologist yesterday. I had my list of things to say. I was going to advocate for myself. Then their office called to say that the computers were down. They were cancelling all the days appointments. They would call to reschedule when the computers came back online. My next appointment shouldnt be TOO far out. Really?
Let me back track since I have not been around. Since a bit before Easter, I have been ill. I have a 24/7 headache. I take naproxen, it makes it bearable, but it comes right back after the pill wears off. I have a host of other symptoms one of which is clear liquid likes to drip out of my left nostril. After talking with neuro, it was decided I would have a brain MRI. He was going to check to see if my mastoids were okay and something about high pressure.
I am open to any diagnosis that will give me clarity and hopefully a cure. What I am not open to is bullshit. I have family and friends calling me a downer. So I just keep it all to myself now. I went to my GP for a regular diabetes check up...he said it was just a headache. I should go see the eye doctor. I should go see the ear dr. I should go see the neuro. But it is just a headache. There are more symptoms then a headache but I wont go into it. My quality of life waxes and wanes day to day.
I fear I will have to fight to be helped. A friend of ours is a nurse practioner. She believes me. She believes that I am leaking CSF fluid and the pressure in my head is starting to effect my eyesight. But I have to get the actual Drs that will help me to listen.
I had to become a bit proactive because I have that control thing about myself. I dont drink soda. I have lowered my sodium intake. That has seemed to help a bit. I have to lose weight. I am at a standstill at this point even though I am eating 1200 calories a day. I really cannot exercise because of the way my head feels but I try. I took a walk with the kids yesterday at that park in the picture. It was good. There were hills. It made us breath heavy and break a bit of a sweat. It felt good to be out. Yesterday was a good day. I had too much sodium with dinner last night and I am paying for it today.
That is what is going on. I think I know what might be wrong but it could be anything. Whatever this headache/pressure thing is, it is effecting my left eye. I have make appt with the eye dr but I have to have the cash to see her first. Hopefully next month.
I am down. I am sad. I keep my thoughts to myself for the most part because nobody wants to read it. The people that I used to have in times like this, I have no more. I guess that is my karma. I am a asshole so I get to deal with this internally.
I thought I would just post this so people would know there is something going on.
Thursday, April 9, 2015
Long story short, I would have had a panic attack if I did not stop the MRI. I was not medicated by the Dr and the headphones to the Bose were broken that day. It was a perfect storm. So I go in today. At 1pm to be exact. They set me up with a radiology nurse so she can drug the heck out of me so that hopefully I wont freak. Let`s see what happens.
I have figured out what is wrong with me. I am not saying right now. I will wait till I hear it from the Dr`s lips. But it aint good. It is rare. It wont kill me but it is a very unpleasant thing to live with. The meds I am on make me dumb as a stump. I was up to 50 mg a day but I had to dial it back down to 25mg. My headaches are better otherwise.
I have made some real life changes ahead of the diagnosis. I know you have heard it all before. I know. I know. But I was scared from what I read. Scared enough that I have lost weight since I figured it out last week.
I will say more when I am told for sure. Or whatever he says. If I am right, I will have other Drs and other tests to go through too.
Just thought I would let you know. I am sorry for not updating.