Thursday, March 08, 2007

So I don't have to explain this a dozen times over the phone, I figured blogging is best.

Some of you know, I went back to the doctor today because my left ear popped day before yesterday. This was completely random because my ear hasn't been able to do so in about a year. I was excited because I could hear a little better, but scared because I didn't know why. Especially since I was to have minor surgery to put a tube in that ear and remove my adenoids in a week. Today, Dr. Cole had me pop my ear as much as I could and it ended up being a good thing. He said a couple of things which I will get into, but has recommended me to a Dr. that specializes in this type of stuff. Dr. House (not to be confused with the cocky dr genius on TV)

As we all know I am a visual learner, so I have attached links and cartoon diagrams to help explain what is going on in my ear. I avoided graphic realistic pictures for those with a weak stomach (Adrienne & Chip).

What I have is called a Cholesteatoma (see diagram attached where I marked in red where it is)

An explanation of what a cholesteatoma is can be found at this link - it's the best I could find.

When I popped my ear for Dr. Cole he could see the cholesteatoma move, so he informed me I need to pop my ear no less than 25 to 50 times a day. He doesn't know if it will help maybe relieve the pressure/suction that could possibly invert the cholesteatoma, but our ears are suppose to do this automatically about every other word we speak allowing air flow. This cholesteatoma is caused, as you can read, from complications of the Eustachian tube not draining. Hence I couldn't hear for the past 10 or so months. Randomly enough the drainage is not happening because my adenoids are abnormally large covering the Eustachian tubes, on both sides, causing the 'clog'.

Either way, I have to have my adenoids removed. As far as the tubes go he is unimpressed with my tympanogram, test that measures pressure in my ear off of my eardrum. It is to be at a bell curve, but even with my ear having popped, mine is still flat. Here is what a tympanogram does So since he is not happy with the results of the tympanogram it is still a possibility that I have to have tubes in now BOTH of my ears.

So here's the potential plan. Dr. House check out the cholesteatoma - then go in remove the adenoids and cholesteatoma, decide if I need tubes and kill about 100 birds with one stone. Seemingly as you can see from the diagram where I marked in red that it is near the eardrum. If the cholesteatoma is removed I may have to have a Tympanoplasty. As I mentioned I left out the graphic pictures and I couldn't find any non realistic cartoon diagrams, so in our language this is an eardrum transplant. They graph skin and make a new drummer boy fer me.

Long story longer....all of this could have been prevented. I have been to 5 doctors now and about to see the 6th in a year about this....ridiculous. As I mentioned a cholesteatoma happens because the fluid in my ear has been 'stagnant', if you will, causing poor air circulation. As you can read in the link about the cholesteatoma it can spread towards the brain, which Dr. Cole explained to me can go toward the frontal lobe or the cerebral cortex that holds spinal fluid, and if not tended to has not so great repercussions. He was unable to see the base of the cyst and is taking action because at this time we don't know which direction its going to continue to grow. They are setting up an appointment with Dr. House for me, but he is allegedly the best of the best and hard to get it may be another month. Good news is this is getting taken care of, I have finally found someone that knows what's going on and by seeing this Dr. House allows for a second opinion and we will go from there.

I will keep everyone updated. I hope you all have a better understanding of what's going on - it's hard for me to explain without these visuals and over the phone. I don't have to have surgery on Wednesday which is good news as well, but I have to wait even longer to get this new found problem fixed which is aggravating.

Now the burning question is......Am I going to fall apart before I'm 30?


Brett said...

Total stranger here. Found your account of your ear troubles interesting, as I've struggled with ear problems since I was 5 years old. I've had numerous operations over the years including 2 tympanoplastys (sp?) and just had my 4th set of tubes inserted this past Tuesday. My right ear is pretty much on its last legs and am looking to have an eardrum transplant...which was what I was researching when I came across your blog. I've learned that, though what we share is fairly common, there is really very little knowledge of its causes and of its remedies. Hope all is well with your ears today.

Rachel said...

Brett, when they removed the cholesteatoma in my inner ear they had to reconstruct my ear drum in the process. They did a skin graph to do so. I'm not sure of all the inner workings of the ear drum, but they inserted a tube in the newly constructed ear drum and the right ear took and the left ear didn't. The tube allowed to fluid to drain. After the surgery on my right ear they reinserted the tube in the left ear and I am able to hear out of both ears now.
Good luck with your ears, I understand how aggrivating it is to not have them functioning appropriately.

Brett said...

That is great to hear about your ears. Hope all is still going well.
Well, things for me have taken a turn. Things looked better as my doctor decided to try tubes one more time which I had inserted in July. She was impressed with my doing it in her office without sedation. Right ear was a bit tough, but left ear was a breeze. All was good until about two weeks ago when pain started radiating through my left ear. Pain is something I've grown accustomed to over the years as it pertains to my ears, become numb if you will. So, to feel such pain that I felt this time around was call for alarm in my book. I scheduled an appointment, which took about a week to get in, so I endured with the pain and drainage...almost like sinus drainage from allergies...watery and clear...again not used to that...used to the nasty gooey junk (sorry for the graphic description). Also, with the drainage, I developed what I can only describe as super hearing in my left ear. Things were really loud...kinda like when you're underwater and things seem amplified yet muffled, but this was different from what I've experienced before. I could walk by a bush and hear the leaves moving...not rustling, but moving. I joked that I could hear a grasshopper pass gas. That lasted about a day, then I could tell my hearing was steadily dropping. I got to my appointment to learn that the tube in the right ear was gone and the one in the left was resting in the ear canal. She pulled it out and around the tube was a ring of tissue which doubled the size of the circumference of the tube. She proceeded to tell me that the eardrum had a hole the size of the tissue that was around the tube. After cleaning the ear out, my hearing plummeted. I would guess I can hear about 30 percent out of this ear now. The irony is that my right ear is supposed to be the one on its last legs. So where do we go from here? More tests and drugs with the latter making me feel so freaking weak. She told me not to exert myself on this stuff as I could tear muscles/tendons/ligaments, so I'm not too crazy about all this. What makes it worse is that I will now have to start all over with my deductibles and so forth as this will carry over to the new year. She did mention that there is a chance that I have cholesteatoma or even a bone degenerative (I think that's what she called it) disorder going on. Honestly, I'm at my wits end with it. Thought more about the transplant stuff that I had read about and then thought, well, if a new eardrum is in place, that doesn't necessarily mean that will take care of whatever underlying issue is going on, will it? I guess I need to do much more research and ask these questions, but for some reason when I'm in the chair, I become a freaking bobblehead. Maybe, I can talk my wife in taking time off to go with me and help me recall what I need to address.
Anyway, sorry to drop all this on you, but just wanted an avenue to get my thoughts out and hopefully out to someone who understands where I'm coming from and what I'm going through.

Rachel said...

Wow, that is no fun!
If you have a cholesteatoma reconstructive surgery is the best route. When they go in they will need to reconstruct your eardrum from a skin graph. I'm not doctor, but if your current eardrum is unable to support your tiny tubes then it sounds as though reconstructing an eardrum would be a good idea anyway.
As aggrivating as ear malfunctions are - the tubes and reconstruction was the best thing I've ever done in my life. Not fun by any means, but I'd do it again in a hearbeat.
The only things that go on in my ears now is when I blow my nose....I feel hot air shoot out of my ears. My husband thinks it's hilarious when I tell him that! :)