Paging Dr. House

Acoustic Neuroma is a rare tumor that is on the nerves from your ear that are connected to your brain. The tumor is not cancerous however it is the size and location that does the damage. As it grows it begins to push up against things and will effect you, like you can lose your hearing, damage your facial nerve (rarely happens), imbalance, etc..... I have a relatively small tumor, most people that have a tumor my size do not even know it is there but unfortunately with me, even though it is small, the location is causing the symptoms. I have not lost my hearing but as the tumor grows, that will surely be the next thing to go. Another negative but will be rare in my case is the tumor impacting my spinal cord which can cause death. Like I said that would be rare in my case because we caught it early.

There are only 2,000 acoustic neuroma cases diagnosed each year and very few surgeons experienced. Some advice I found on a website was to get multiple opinions, since these surgeries are rare and there are about 7-8 different treatments, doctors will tend to steer you towards a treatment they have the most experience with, not necessarily the one that is right for you.

Next steps

My primary doctor referred me to a local physician whom is experienced with this. Of course as soon as I found out, I immediately went to the Internet. I found some really helpful sites, especially http://www.anausa.org/, they have discussion forums on there and I read through many of the posts. While reading the posts I found out about the House Ear Institute, yep that's right....Dr. House is in the building! Obviously not the Dr. House on t.v. but apparently this guy works miracles also. Actually this institute works miracles, they were the ones to write the book on how to treat these tumors.

HEI

House Ear Institute is apparently the cream of the crop, top notch, people travel from around the world to have their surgery done by these world renowned doctors. This got me thinking, if I have to have brain surgery I want it done right and by the best. I also found out that they will gladly review your scans and call you will a recommendation. Thursday, I sent my scans and report express delivery to their team of doctors and I am anxiously awaiting their phone call.

The comparison I used was, if you were going to build a house and the neighbor to the left of you built his house, and the neighbor to the right of you watch the other guy build his house, which guy would you want to build your house? Well duh, the guy who has done it.

If you had asked me after I found out about HEI where I would do a surgery, I would have told you, hands down, I will pack my bags and travel to Los Angeles, over half of the people on the discussion forum had traveled to LA to get their surgery. I had already researched the facilities around it, and knew there was a guest hall near the hospital that was similar to a hotel that we could stay in. Obviously as I was considering this I also saw the price tag going up and thinking "how the hell am I going to pay for this?" I knew I was going to have to battle the insurance companies just to have them pay for the surgery but now, I will have other costs involved. I considered getting a second job, that would give me extra money to save and I could possibly get a second insurance.

Tampa Bay Hearing and Balance

During my research of awesome physicians, I found a surgeon in Tampa which is much closer. Dr. Bartels is very experienced with these tumors and the surgeries involved. Also he is highly recommended by HEI they said there are only 1 or 2 surgeons in FL they were recommend. I checked and they accept my insurance, plus we could drive there, so now my costs might not be as bad as I expected.

As you can see, I am more so leaning towards surgery. Radiation is an option but that is only recommended for older people that their bodies can not handle surgery. In my case, I am predicting they will suggest surgery, middle fossa to be exact. The middle fossa surgery is one of the rarest surgery's done, riskiest but can be the most rewarding. The middle fossa surgery will give me 95% of saving my facial nerve and 50% chance of saving my hearing. The other surgeries, almost guarantee you will lose your hearing, and since most people have already lost their hearing when they are diagnosed, they recommend the surgeries that will not fix the hearing but in fact completely destroy it. I am a rare case in that my hearing hasn't been effected.

Also I have a doctors appointment set up on April 7th, to see the specialist in Jax. Before then I hope to hear from HEI and with their recommendations and I will compare recs with the specialist here. I plan to email the doctor in Tampa next week to get his recommendation, so I will have some pretty good opinions.