As you all know I have been absent for the past...oh month or so. This post will not have any pictures to look at or really any cute stories to tell, so sorry in advance. This post is really for me, to let my anxiety flow from my body to my fingers and finally to become the written word. If you don't want to read this, I understand. Ok, so here is the past month of my life, and how I became diagnosed with Fibrous Dysplasia.
It's been about a month now since my first appointment to the Ear/Nose/Throat dr. I have been having chronic sinus infections, well since forever. This winter was especially hard with one after another. I have had lots of sinus pain and I finally thought since I have decent health insurance I might as well get it checked out. I talk with the ENT and he thinks we should get a CT scan of my sinus. Good, we are finally getting somewhere! So the next week I go get the test done, 10 minutes, I was done, easy as pie. I had to wait another 2 weeks to get the results. So I go in, I believe it was June 24th, and while in the waiting room I'm thinking that they will tell me I have sensitive sinuses, they will give me some meds/advice and all will be good. Well, not so much. The dr. comes in, goes over the scans, points to a mass. Then says, yeah that's not supposed to be there. Radiologist says it's fibrous dysplasia. Uh...HUH? Ok, at this point I'm thinking, this is NOT what I signed up for. They weren't supposed to find a MASS in my sinus cavity. So the dr. is still talking, and he doesn't know what it really is, except that he knows my bone is turning into fiber, which means, I no longer have bone in that part of my head. LOVELY.
Dr. decides to have me go to another dr. and have them look at the scans. So I find a family dr. in the same practice and make an appt. First one goes pretty well. She thinks the radiologist over-called it and it's probably just scar tissue from several sinus infections. OK, I can handle that. But just in case, she will have me go see another dr. and see what they think. A few days go by, I get a call from the family dr. She wants to see me the next day. She has new information and will need to do some tests.
Ok, we're getting somewhere, but the whole, 'more tests' has me a bit confused. If I need more tests, that means something's wrong, right? I go in the next day. EW leaves work early just in case they tell me something horrible. (over-reacting? my ass. You have never been to a dr. where they told you that you had a brain tumor with just looking at you and taking your symptoms. Then proceeding to say that their father died of a brain tumor and they just diagnosed a young girl with one the other day!)
EW wasn't there yet, so I went in alone. Nurse had to do an ekg. Ok, so something is up if you need to test my heart. Dr. comes in and says that she has conferenced with the ENT and Radiologist, it's definitely fibrous dysplasia. Ok. I'm still breathing...so what does this mean? Well my bone is definitely turning into fiber in my head, but I need a full-body bone scan to see if there are 'tumors' anywhere else. The chances are not likely since I've never broken a bone, but I haven't played sports or high impact anything my entire life. The other thing is that the FD can screw with your hormones. Next stop on my list of dr.'s is an Endocrinologist and a ENT sinus specialist.
My bone scan is this Thursday. Sinus guy the Friday after next. I am relieved I don't have cancer...well at least they don't think it is cancerous. Only 1% of FD actually becomes cancer. The sinus dr. might want a biopsy (really not looking forward to that). I have done some research and the things that the dr.'s have told me, which isn't much. I should know more in the next few weeks when my tests come back and I see the rest of the dr.'s.
How did I get this? I've had it since birth, FD is a genetic mutation and they believe about 1 in 15,000-30,000 have it somewhere in their body. This could account for all the sinus pain I've had all my life and the seemingly endless headaches. There is no cure. They will continue to watch my 'tumor(s)' for the rest of my life, to see any change, or if it is bigger/etc.
It's easy to think that after all the little things here and there I'd had to deal with, why must there be another? But then I think of all the people that are going through way more than I've been handed. It doesn't make my issues go away, but it does make them a bit easier. God does also. He will never give you more than you can handle. He is always with you, always there. I will say with the move, trying to find a new place, and the job hunt, I have felt like I'm drowning and I just can't quite make it to the top, but then EW will say something, Bandit will do something, my mom will yell something, and I will pop back out of the water, and float for a bit longer.
Well that was alot. More will come about what else has been going on!
-Brina
1 comment:
well.... thank goodness i don't have a lot of sinus issues except for once a year if that, but i sometimes get headaches a lot otherwise i would think i have what you have. I try not to read a lot of medical information because then I start assuming I have what the article talks about. I break down crying sometimes because of all this dizziness, but deep down I know it is just an inner ear infection because my ears hurt constantly... Just last week I thought I had leukemia because I was a little tired and then I read the symptoms and I was like I don't have any of those symptoms!! lol.... I crack people up because I always think the worst!! I know what you mean about the brain tumor thing though.. When I was younger I was having headaches so I went to the doctor and he said I might have a brain tumor, which I actually never had.. but it does scare you... I know as long as we trust in God and give him all our fears he will provide us with the answers!! I hope you start feeling better, and I know nothing serious will really happen to you!! You just have to be optimistic with everything. Don't be like me that constantly thinks the worst!! I hope you feel better!! :)
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