Last week on Thursday, I sent my scans and report to the House Ear Institute in Los Angeles. They received my scans Monday, and today (Tuesday) I received a phone call. Dr. Fayad called me and said a team of doctors reviewed my scans this morning and had some information for me. So I have always said I am special, well apparently my tumor (Lloyd) wants to be special too. Dr. Fayad said that 99% of the tumors....yes 99%, almost the guarantee you get on condoms, 99% of the tumors grow on the balance nerve. Well mine decided to be an outcast and is growing on my hearing nerve. Unfortunately for me that means I will most likely be deaf in that ear (left side). If I wait and the tumor grows, it will destroy that nerve and if I have surgery they will destroy that nerve also since that is where the tumor is growing. Not exactly the news I wanted to hear (no pun intended) today, what I was looking for was...
Good Afternoon Jennifer, Great news, your tumor is pressing on a fat gland, yep, only you have a fat gland - nobody else, so to get rid of this tumor, eat some stouffers mac n cheese, have a starbucks frap, tomato and mozzarella panini, and eat some red lobster cheddar biscuits and the tumor will go away which will decompress the fat gland, you will lose 30 lbs over the next week and continuously lose weight so eat anything you want whenever you want.
Yeah, the doctor didn't say that at all. Actually what I did want him to say was that I was a candidate for Middle Fossa surgery and even though it is risky, I will have the best chance of keeping my hearing and getting rid of the tumor. That is what I wish he said.
I still have no clue what to do, the biggest thing I think about each day is that what ever damage is done can not be undone. I am just so afraid to sit and watch this thing and regret not doing something sooner. The doctor at HEI suggested I get three tests done, VNG test, hearing test, and ABR test. Once I get the results he asked me to send them to him, and he will make further recommendations. He also gave me his cell phone number, which I thought was pretty amazing.
I guess now I am waiting to see what the results are of the tests, not really sure what to think, just taking it day by day. My family and friends have been very supportive, so Iwant to thank you guys.
Tuesday, March 30, 2010
Monday, March 29, 2010
Check Please!
So, I named my tumor.....drumroll please......................Lloyd! After Lloyd Christmas from Dumb & Dumber, man I love that movie. On the other hand, the more I think about Lloyd, I really want him out of me. It is a bizarre feeling to know there is something in your skull that shouldn't be and could be growing. Last night was not so great, I had an extreme headache on my left side, felt like there was a lot of pressure building up and for the life of me I couldn't find the release valve. Today I had several perception episodes, they weren't as trippy as they have been. Maybe I am just noticing these things more now that I have been diagnosed and know what the symptoms are. I have never done LSD aka acid, but if I ever had to imagine what it would be like, I think my little episodes would come pretty darn close. Found some really good presentations today, they were presented at the last Acoustic Neuroma Symposium. I sent them to my Mom, Dad, and Jeff....then I quizzed Jeff later and he failed miserably. Way to go Honey!
I am going to make this post short, as I really need to get to bed at a decent hour tonight.
I am going to make this post short, as I really need to get to bed at a decent hour tonight.
Friday, March 26, 2010
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.
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.
Thursday, March 25, 2010
I have a what?
On Tuesday, March 23, 2010 I was diagnosed with acoustic neuroma. Which is basically a benign tumor near my brain. A total shocker to me. I set up this site to have a central source for people to follow my journey, I say journey but make no mistake, this is no walk in the woods and really sucks. Here I will post any updates and a lot of my thoughts, so if you don't like what I wrote, then don't come back. With this tumor, I kind of earned the right to be pissed, so I am going to put down my thoughts here.
Symptoms:
The past couple of months I have had these extreme headaches. They were awful, at times I just wanted to pound my head into a wall, and I could feel tons of pressure building up in my head. I went to the ENT and begged him to do something, this just had to stop. He scanned my sinuses with an MRI-like machine and low and behold they were clear. He gave me some stuff to shoot up my nose and I was on my merry way.
Recently, I started having perception episodes, which when I saw a doctor, the first thing I said was "don't think I am crazy, but" at times it seems as though I am moving but I know physically I am not. A good example is, have you ever been in a car that is stopped but out of the corner of your eye, the car next to you is moving and you feel like you are moving. That is similar to what I feel.
Other symptoms are, dizziness and tingling in my hands.
Diagnosis:
I went to the doctor last week, explained my symptoms and my reason it brought me in (I will discuss in a later post) and he said I should go back to my ENT but just in case, we should do an MRI of my brain to rule that out and he was confident it would be normal.
Monday, March 22nd, I had an MRI done.
Tuesday, March 23rd, a STAT report was sent to my doctor notifying him of the tumor, then I received "THE CALL" Which is kind of odd I was notified by phone, but I am actually glad it happened that way. I immediately started crying and wondering, how could this happen to me? I called my mom, which I knew would be hard, but she is the only person I wanted to talk to, she obviously did not take it well. It is kind of tough news to take.... We talked for a bit, then I drove home and on my way I called Jeff. Since he was in Norfolk, I knew he would want to comfort me, so I put on best voice and called him. I didn't let him know of my concerns, just told him they found a tumor but I thought it was nothing and that I would be fine. I cried most of the ride home, pulled into Isabelle's daycare, powdered my face, then went inside. Isabelle won't understand what is going on so there was no reason for her to see me upset. My sister met me at home and hugged me, which is what I needed.
I am pretty exhausted now, I will update with more tomorrow.
Symptoms:
The past couple of months I have had these extreme headaches. They were awful, at times I just wanted to pound my head into a wall, and I could feel tons of pressure building up in my head. I went to the ENT and begged him to do something, this just had to stop. He scanned my sinuses with an MRI-like machine and low and behold they were clear. He gave me some stuff to shoot up my nose and I was on my merry way.
Recently, I started having perception episodes, which when I saw a doctor, the first thing I said was "don't think I am crazy, but" at times it seems as though I am moving but I know physically I am not. A good example is, have you ever been in a car that is stopped but out of the corner of your eye, the car next to you is moving and you feel like you are moving. That is similar to what I feel.
Other symptoms are, dizziness and tingling in my hands.
Diagnosis:
I went to the doctor last week, explained my symptoms and my reason it brought me in (I will discuss in a later post) and he said I should go back to my ENT but just in case, we should do an MRI of my brain to rule that out and he was confident it would be normal.
Monday, March 22nd, I had an MRI done.
Tuesday, March 23rd, a STAT report was sent to my doctor notifying him of the tumor, then I received "THE CALL" Which is kind of odd I was notified by phone, but I am actually glad it happened that way. I immediately started crying and wondering, how could this happen to me? I called my mom, which I knew would be hard, but she is the only person I wanted to talk to, she obviously did not take it well. It is kind of tough news to take.... We talked for a bit, then I drove home and on my way I called Jeff. Since he was in Norfolk, I knew he would want to comfort me, so I put on best voice and called him. I didn't let him know of my concerns, just told him they found a tumor but I thought it was nothing and that I would be fine. I cried most of the ride home, pulled into Isabelle's daycare, powdered my face, then went inside. Isabelle won't understand what is going on so there was no reason for her to see me upset. My sister met me at home and hugged me, which is what I needed.
I am pretty exhausted now, I will update with more tomorrow.
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