Has it been 6 months already

Well, got the phone call today....time to set up another MRI. I scheduled it for early next week so probably by late next week I will find out some information. Ideally, I want no growth - that would be the best scenario. Then we would take note that it is there, do a scan next year, but hopefully not have to make any big decisions for 10 years. On a side note, I have been extremely busy with work. I have been tasked to do a lot of things that all have a due date of NOW, on the other hand I love the pressure and enjoy my success. Thanks for checking in on me, once I know more, I will share.

Dr. House.....er, I mean Dr. Fayad

I spoke with Dr. Fayad from the internationally infamous House Ear Institute located in California, he went over my scans and test results and agreed with the watch and wait for 6 months then a follow up MRI. We talked about the tumor's location and he said it was unfortunate it appeared to be on the cochlear nerve because if it was growing in the location where 99% of them normally grow, this would be the perfect time to do surgery and I would save my hearing and i minimal negative effects. I always wanted to be unique but like they say "be careful what you wish for."

Dr. Fayad and his staff have been absolutely amazing, he is consulting on my case for FREE and even gave me his cell phone number if I have any questions. My doctor here was impressed I had him consulting on my case as well and stated there is a lot of misinformation out there but I was getting good information from him.

Finally....a little relief!

So the medical bills have begun to roll in. There are seven of them totaling an amount I can't afford so I have been calling them to ask if the doctor will charge less and if not then I will be sending $20 a month. The first company said they would reduce the bill but it had to be paid in full, my response was depending on how much this may be a great deal, the representative excitedly said they could reduce it by 7%.....seriously, 7% percent! The next one said they couldn't adjust anything. The next doctor I called was my ENT that did several scans because of my symptoms but thought it was sinus infections, unfortunately the scans were very expensive and led to nothing. I called him and told him my diagnosis which he knew what an acoustic neuroma was as he had diagnosed them before then referred them to specialists. He had encouraging words and understood that my medical bills will get very expensive so he deducted ALOT from his bill and I was able to pay him in full. I have four more doctors to call, getting ahold of their billing department has almost required an act of Congress. But whatever question I don't ask, the answer will always be "No", so I will call them and hope they reduce it.

I still have the dizziness and have found some days are worse than others, but it is still managable. The ringing in my ear is sporadic and tolerable.

I have many things going on now so my time is easily occupied. I have several exciting things going on at work, not to mention the amazing people I work with. Plus, Jeff retires in September which can not come soon enough.

Thanks for listen, much love.

Jenn

Overdue

To say the past week has been crazy is the understatement of the year. I have neglected the blog but I am here now, ready to post. :) Now to the part everyone has been waiting for, I got my test results on the 23rd which like my past doctor appointments, the news wasn't good nor bad, just news. I have an 18% balance impairment, once it reaches past 20% the doctors get concerned. The doctor and I discussed the results and I will wait 6 months and have an MRI. Hopefully, after the second MRI we will learn the rate of growth and more about its location. Thanks for following my blog and all your love and support!

Had my tests today....

I had an appt at 1:00 today for some tests and I would be there for 3 hours. The tests were very interesting and some I never want to do AGAIN!
1. This test I sat in a chair and watched a screen display the letter "E" in different positions then I would name the position (up, down, left, right). The first two rounds my head was still, the third and fourth rounds I had to move my head from side to side as if I was shaking my head "no", this made me really dizzy but I did well.
2. The posturography test was really weird. I stook barefoot on a platform and wore a harness that would hold me up if I fell. There was a wrap around scene around me also. This test was about 15-20 minutes, I would have my eyes open and closed at times. Sometimes the platform would move, other times the scene would move, and sometimes they both moved. I was confused sometimes and didn't know if the platform or the scene was moving. The harness and nurse had to catch me one time, other than that I stayed on the platform.
3. The rotary chair test was CRAZY! I sat in a chair in a dark room with a camera on my right eye that recorded eye movements. The chair would spin around fast and slow, and move up and down, and rock all different ways. I was completely disoriented.
4. This test was not painful but I did not like it at all. Seemed simple enough, lie down then the nurse sprayed water in my ear. Boy oh boy, was I in for a shock. I layed down, then cold water was sprayed into my ear for 30 seconds, about half way into the spray, I got VERY dizzy. Then she waited 5 mintues and cold water was sprayed into my left ear (tumor side), I did not immediatly get dizzy but eventually I did. Next warm water was sprayed into my ear, then waited then she did my left year. Using the warm water, I had similar results as with the cold. Normal results are getting dizzy about half way through the spray. After she was done, I was so dizzy I thought I was going to be sick.
5. The last test didn't require me to do much but turn my head and listen to sounds.

I get the test results tomorrow and do any follow up testing, then the doctor will make a recommendation.

I think I am going to have nightmares about water being sprayed into my ear, I still feel it.

Still sick

Isabelle and I have been sick since Wednesday, I think on Friday our symptoms were the worst. Both of us are on antibiotics, Isabelle is doing better but I still feel very sick. Tomorrow I have my final exam for school, then next Wednesday I will graduate. I am getting anxious about my tests coming up on Thursday, then I will find out the results on Friday. Maybe then I will actually find out what the heck I am going to do. After thinking about my last visit with the doctor, I feel like the doctor is not taking my concerns seriously. I know that my tumor is small and most people when they are diagnosed with a tumor it is rather large, I feel like he isn't taking me seriously since mine is small. However, I am giving him the benefit of the doubt, I am sure since he see's these often he is somewhat desensitized about them. Hopefully, a lot of questions will be answered this week at the doctor's office.

Whew!

Well, I survived the weekend....barely. Isabelle's friends and family birthday party was this weekend and I swear no matter how much I get done before hand, it is always chaotic. We had a bushel of oysters, 8.5 lbs of shrimp and hot dogs. The good thing about chaos is you tend to forget about other things aka my tumor (Lloyd) A test that was done at my last doctors appointment was where I had to march in place for 60 seconds with my eyes closed, the results I move forward slightly and to the right 45 degrees. I have asked friends and family to do the test just to see what some normal results are, and I can honestly say, I still don't know what normal results are. Maybe I don't have normal family and friends, although I didn't need a balance test to confirm that. My mom marched about 4 feet forward and to the right about 15 degrees, Jeff turned to the right slightly, and my friend Shellie... well she is always out of whack! (Love ya Shellie) Any time I have talked to someone about my tumor and described my symptoms, it seems like everyone has all my symptoms too, maybe this tumor things is an epidemic. I am kidding, my symptoms are actually pretty common individually but as a whole can be bad. I completed my last two assignments tonight for my final college class and will take my last final exam tomorrow, then I am DONE! Miami bound in 16 days! With as long as I have gone to school I should have my doctorate degree, but I am equally happy with my dual major in Business Management and Finance. Isabelle will turn 5 this Tuesday, where did my baby girl go? She is becoming quite the young lady. Today, would be the day they induced me and my 30 hours of labor started. I love you Isabelle, well worth every hour.

Not good news, Not bad news, just news....

I went to see the specialist today. First I was given a hearing test, which they put me in a room which was bizarre in itself, it reminded me of the popular optical illusions that you stared at it long enough, an object would appear. Anyways, the room was very weird. They did several hearing tests along with the word discrimination test and I did well on both, minor loss in my left ear but overall good. The audiologist conducting the test mentioned the nurse that would take my information had an acoustic neuroma and would share her experience. After the hearing tests we went into an exam room and the nurse, Ericia came in to document my symptoms, she gave me a handout for a support group and a copy of a book she wrote about her experience. Next, the doctor came in, he went over my scans and we saw my tumor (Lloyd). The doctor was impressed that I had already spoken with House Ear Institute and said I was getting good information. He basically said everything that I have read, my three options are:
1. Wait and Watch
2. Radiation
3. Surgery

He wants to run some more tests to find out more about the tumor, then he would give a recommendation but it would more than likely be watch and wait, then have an MRI in 6 months to see if there is any growth. Ideally, I want the tumor to not grow at all. I asked him what the goals are when you have this kind of tumor, they are:
1. Save your life
2. Save neurological function
3. Save facial nerve to avoid facial paralysis
4. Save hearing

It is almost a guarantee, I will lose my hearing so the first three are key. Obviously I would love to have my hearing in that ear but if I had to decide between my hearing and facial paralysis, I would give up my hearing. He did say that there is no way to find out how close the tumor is to my facial nerve unless he does surgery. He did stress that mine is small, however I was hoping that since it was small I would have more treatment options and less damage would be done. I go back in two weeks for 3 hours of balance testing. As I checked out, the nurse said my insurance didn't cover one of the tests and my amount is $108 to be paid that day....lovely! Even with insurance this is expensive, my portion of an MRI is $190, so I will have that expense twice a year, along with other things related to this. What else is next?

'So it wasn't good news, not bad news, just news.

Thank you for all your support!

Tomorrow I see the specialist

Tomorrow I will see the specialist here in Jax. I called them on Monday to let them know about the tests that House Ear Institute recommended I get and ask if I could go ahead and get them done that day. The receptionist said "The doctor doesn't like to order unnecessary tests unless he has seen you", I said are you kidding me, I hardly think these are unnecessary, do you realize your doctor did a fellowship at this institute, I doubt they are unnecessary. She said well we don't have time that day anyways. Why didn't she say that in the first place, it isn't like a have self diagnosed myself on the interet. So tomorrow I will be having a hearing test and I hope the other ones also. I will keep everyone posted.

Is it ever going to get easier?

I find it easier to tell people of my diagnosis via the phone or through an email. I apologize for it appearing to be impersonal but the words "I have a brain tumor" aren't easy to say, especially when you see the look on their face and the silence that follows. Even typing an email or talking on the phone about it brings tears to my eyes, plus there is usually a lot of questions that follow so I answer them then direct them to the blog, where a lot of questions are answered. This just really sucks, and fear of the unknown. If anyone has a crystal ball, I'd love to borrow it, it would make this a lot easier. My first thought about treatment was, "I just want this thing out of me", which is still true right now, but with any treatment I will be giving up something. Depending on the results of the next tests, I think I will have a better understanding of the damage done. Now I am leaning more towards waiting to see what it does, but as I have said in a previous post, what ever damage that is done can not be undone, so it is a big gamble.

On a side note, something great happened today, no need to go into details but this lifted a huge weight off my shoulders. I can breathe a little easier now. Isabelle's school birthday party is this weekend, she invited girls from school to a party at gymnastics, it should be really cute. Easter is Sunday which is a huge event in my family, definitely one of my favorite holiday's, we play volleyball, corn hole, hunt eggs, and eat LOTS of yummy food. A bunch of families get together, it is unfortunate we don't make this a monthly thing with as much fun as we have. Jeff comes in tomorrow, so Isabelle and I are excited about that. She wanted us to have a race down the hallway and the winner got to give Jeff a kiss first. I think it is sweet.

Thanks for reading.

The Call

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.

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.

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.

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.