it's not cancer
Friday, June 26, 2009
Nice way to start a blog, right?
So you may know, (or not) I was on a 'get healthy" kick in the fall. I quit eating wheat, and started eating more fruit and healthy proteins and blah blah blah (oh, I was still drinking, fear not...) and then around the beginning of November, I noticed that I was having distorted hearing and a ringing in my left ear. I truly thought it was a cold or something, and so I let it just work itself out for a few weeks. By the end of the month, I was ready to see some health care professionals.
I called my doc, who gave me (reluctantly) a referral to an ENT for December. She wanted me to wait two more weeks, but I told her that by the time I got the referral and made an appointment, it would already be two weeks, and if my ear was better by then, no harm, no foul...right?
I also believe in alternative medicine, so in early December, I saw my chiropractor, my acupuncturist, and the big guns, the ENT.
My chiro said I had a systemic yeast infection, and put me on a Candida diet for months. Over the course of four months, I saw him 12 times. I was cracked, adjusted, lasered, chanted to, and given lots of vitamins and herbs. The treatments and the diet made no difference in my hearing or the ringing.
I had a total of three acupuncture treatments over the course of three months, to clear up congestion and bought lots of herbal stuff. The acupuncturist poked me in the head, the hands, the face, and the feet. My congestion is less substantive, but it made no difference in my hearing or the ringing.
The ENT told me I had some hearing loss (duh) and to come back in three or four months, possibly for an MRI to see if there was a tumor or something else going on. Three months later I called for the MRI and he again made me come in for a hearing test, which showed a little bit more loss, not much, and again said to wait three or four months for the MRI.
In early June, I called my doc again and asked for a referral to another ENT (there isn't one in B'ham) because mine would not do the MRI. She scheduled the MRI for me the next week. (Have I told you I love my doc?) I went in on a Wednesday morning. That afternoon, her nurse called me (It's never a good sign when your doctor's office calls you the afternoon of a lab test....I know that from past experience.) She told me I had something called an "acoustic neuroma" that is was kind of rare, and she wanted to schedule an appointment for me to come in the next day and talk to my doc about the results. (another $15 copay)
I went in the next day (No Waiting!!) and she basically told me what I had already figured out (thank you Internet) that the acoustic neuroma was a small tumor on my auditory nerve that was causing the ringing, deafness and dizziness and that it might need to come out, but I definitely needed to see a neurosurgeon.
Oh, and that I was right (again) in my own self-diagnosis, and was there anything else I felt she needed to scan, because she was open to scheduling whatever test or referring me to whatever and whomever I wanted.
Referral 1:
A doctor here in Bellingham, who, when I called, could not see me until August. When offered another neuro in the office, I asked for someone familiar with my "issue" the helpful receptionist told me that they hardly ever treat that condition. Which led me to
Referral 2:
The GH specialist in Seattle, who's on-line bio was minimalistic, and our friend who is a doc in Seattle had never heard of him, which brings me to
Referral 3: (my poor doc's referral woman...she has been so nice to me..
I got an appointment with a doctor Rubinstein (NJB) at UW. There were three others whose name I got, who had treated other friends from B'ham, but I went with my gut and picked Dr. Jay as I am going to refer to him.
Supplemental consultation...there is a place in LA that is pretty well known for this kind of medical issue and does different kinds of treatment procedures and they do free phone consultations. I sent them my stuff last week. A doc from that facility called my home on the 24th, and got my daughter on the phone and told her he was looking for me to discuss my "brain scan and the tumor" Thanks. (I hadn't told her yet. I wanted to get all the information, plan of attack and prognosis to keep her from worrying. Thanks ****. Welcome to HIPAA) She about ****. Actually, she told me she cried for about an hour and a half. She's so far behind me in tear time it's not even a competition. The news from the consult doctor was not good, but since I have no intention of seeing medical attention there, I'm guessing his opinion is **** now and does not deserve more space here...'nuff said.
So the last friday in June, Ken and I drove down to Seattle and spent two hours of my life planning my future with a man I had never met.
The long and the short of it is this:
Yes, there is a tumor.
No, it is not Cancer,
Yes I will lose all the hearing in my left ear.
No, the ringing in my left ear will probably not go away.
Yes, there is a slight chance I will have nerve damage in my face.
No, I am not happy about that.
Yes, that makes me very nervous
No, I won't ever need botox.
Yes, they will have to cut the nerve in my ear that helps with balance.
No, won't be able to go for a walk around the lake right away.
Yes, I will be able to drink shortly after surgery.
No, I will not be able to drive for a few months.
Yes, I will miss about a month of work.
No, I will not have to quit my job.
Yes, my boss said I could take a leave of absence.
No, I do not have sick time or vacation time at my job.
Yes, it needs to come out.
No, it does not need to come out today, this week or this month.
Yes, I can wait until after the Chanuka party.
No, I should probably not wait longer than that.