Friday, May 13, 2011

Specialist Update

I have two different types of vertigo battling it out in my head (he called me the Vertigo Queen). The first one is from the Meniere’s disease and he doesn’t want to address that just yet (more on that later). The second is called BPPV (Benign Paroxysmal Positional Vertigo) and is caused by head positions. I go back to the office next Thursday for them to use this machine that looks like an amusement ride (I don't think I'll be too amused) to try and correct the problem. Then, I’ll go see him in one month to have the BPPV re-evaluated.

The next order of business is to schedule an *MRI because he thinks that there is a strong possibility that I have a brain tumor called an acoustic neuroma (AN). Since I have a family history of this type of tumor and another (my sister had an AN and my mother and brother each had the other type – cholesteatoma), he wants to do an MRI of my head. I had an MRI in 2000 but the AN is a very slow growing tumor and it is possible that it caused the sudden hearing loss and vertigo (that was diagnosed as Meniere’s) and it just didn’t show up on the scan. MRI machines have improved over the years and something as small as a 5mm spot could have been impossible to see at that time. 5mm could cause the hearing loss and still be misdiagnosed. The combination of the BPPV and Meniere’s vertigo is what is affecting my balance right now. If I do indeed have an AN, then I’m not sure what he’ll want to do. I know my sister had the surgery in 1999 and it’s pretty major.

Next, he’s recommended what is called a BAHA hearing aid system and said I was a perfect candidate for it. It’s an internal screw (titanium) that they put into the bone behind the ear and then after three months (after it’s taken good hold in the bone) they put the external piece on. It gives you the feeling of hearing through bone conduction to the good ear and is different than a cochlear implant, which needs an intact hearing nerve (which I don’t have) to work. They put the display device on my head and I nearly cried because I could hear; the guy said my face just lit up. Then, I found out the cost involved and nearly cried for real. LOL! Insurance will pay for the surgery at 100% but only $600 on the device, which is about $3500 by itself. They wouldn’t do the BAHA until after they determine if I have an AN and if it needs surgery. They can’t implant the titanium screw into my head if they have to do the AN surgery until after that heals.

So, that’s the scoop and all I know at this point.

*I got a little irritated at the doctor. He is a specialist in his field (and a specialist in the area of ANs) but he had terrible patient/doctor skills. As I'm trying to talk to him, he got up and left the room. His reason? Because I said I have terrible anxiety attacks and need to do conscious sedation for the MRI. His theory is that 5 mg of Valium is enough and if I need anything more than that, I'm wasting his time. So I called my PCP and told them how he blew me off and if he thinks I need an MRI, I want one but I also need to be able to lie on the table to get one. I know (from previous experience) that they strap your head down and the machine is very, very close to your face. With claustrophobia and anxiety - which hits without warning - I'm afraid that I'd try to come off the table in the middle of the test. He may be an expert in HIS field, but he's not an expert in MY care.

5 comments:

Thisisme. said...

Oh dear. All this doesn't sound too good. I shall be praying that you won't have to have an operation and that it will turn out NOT to be a tumour, although with your family history I suppose it is quite likely. Just as you were settling into your new home, you now have all this to worry about! Will be thinking of you.

Bouncin' Barb said...

Teresa...First off, let me give you a huge hug ((( X )))). Why do I feel that you and I are on the same path of that shit storm! As if you don't have enough to deal with. Perhaps a second opinion can be gotten by someone who listens to you. When my husband had to had to have MRI's of his liver he was very claustrophobic and they pretty much gave him anything to keep him really calm. I have had 3 and I don't like them one bit but good lord, why make a person suffer. Keep us posted on the progress of all this please.

SkippyMom said...

Can your PCP either prescribe something to keep you calm or perhaps refer you to a new doctor.

I know it's not fair, but I fall asleep in the machine. I don't know why except I am so bored. :wink:

I hope that your PCP can do something for you - this needs to be taken care of soon. Always thinking of you my friend, my friend.

Jo-Anne Mother and Nanna said...

Is it just me or is it that some of these experts lack a lot of people skills.........they should have to study how to deal with people because so many of them have no idea....... I have never had to have an MRI and really do not know how I would cope but you know you will need something to help keep you calm........it isn't like you could just not tell him.

I will be praying for your not to have a tumour but as you said with your family history it may well be the case.......

I can't image not being able to hear. Although I am losing my hearing and do have hearing aids which thankfully didn't cost me anything as I am on a pension and the goverment paid...........

Donna B said...

Oh T...I will keep you in my prayers...but I TOTALLY AGREE with you on being properly relaxed for the MRI. I had to have one when I had my slip and fall and my doctor was checking for a torn rotator cuff. I had to drive across town so I could be in an OPEN MRI instead of the closed one. Even the open one was difficult for me. I had a panic attack before I even went into the machine. It took all I had, but keeping my eyes closed and taking myself mentally to another place, while praying, I made it through. You are way stronger than I, so I know you can do it. ((((hugs))))