GET OUT!!!

Is official....I am giving Mr. T (grape in my melon) the official two week notice tomorrow.

I am traveling again for two pre-op appointments on Thursday back in NYC. I am doing the jig that we don't run into any hurdles this time.

AN 101

I have tried and tried but am unable to upload my actual MRI pics at this time. This one I found looks very similar. The white "mass" that is sort of shaped like a head of cauliflower is the tumor. The structure that its pushin on is the brainstem. The function of the brainstem is:

The brain stem plays a vital role in basic attention, arousal, and consciousness. All information to and from our body passes through the brain stem on the way to or from the brain. Like the frontal and temporal lobes, the brain stem is located in an area near bony protrusions making it vulnerable to damage during trauma.

Functions:
Breathing
Heart Rate
Swallowing
Reflexes to seeing and hearing (Startle Response).
Controls sweating, blood pressure, digestion, temperature (Autonomic Nervous System).
Affects level of alertness.
Ability to sleep.
Sense of balance (Vestibular Function).

Observed Problems:
Decreased vital capacity in breathing, important for speech.
Swallowing food and water (Dysphagia).
Difficulty with organization/perception of the environment.
Problems with balance and movement.
Dizziness and nausea (Vertigo).
Sleeping difficulties (Insomnia, sleep apnea).

Skinny here I come....

So I was thinking.............They think that the tumor has been around for a while but since I didn't start having hearing problems till I got married I am guessing it starting to grow larger about 5 years ago. So 5 years ago I was a size 10. Some of the side effects of an acoustic neuroma is excessive tiredness. So if you are thinking what I am thinking....................this tumor must weigh about 100lbs in my head. So I am so expecting to be that much lighter after the surgery!!!! You all thought I was going to say that since I was so tired I couldnt exercise....thats the logical response but not the correct one! I am going to ask my specialists next week if I should go out and buy new clothes for my new body!!!! What do you think he will say to me???

Were not in Kansas anymore.....

So my husband and I are looking into hotels by the hospital so he can be close by to me for the first few days. I guess one of the ways you know you were brought up in the "boondocks" is when you go into slight heart failure when you find out that its going to cost around three hundred dollars a night to stay in the city. We just went on vacation and spent alot less than that for our own Condo on a lake in Florida. That place even came with its own alligator.

Nothing

I really don't have to much to say these days. I have been trying to not obsess too much over the ...well you know (whispers--"the Tumor"). I have been back to work since last Thursday. I have been getting rides from my wonderful co-workers and my wonderful dad. Besides the driving I think I am pretty much back to my normal routine. So yes, I just admitted that since I am not obsessing over the .....T-thing that my normal life is really too boring to blog about. I have been getting alot of questions regarding my hair and how much I am going to have to shave . I even had a friend offer to pre-shave it for me before the surgery. Can you imagine if I showed up for my pre-op appointment next Thursday looking like this .

Help needed

So I looked up the neurologist that will be assisting Dr. Selesnick during the surgery. I think it took me over 15 minutes to read his biography. Check this out.

http://www.weillcornell.org/pstieg/

It really seems that everything is going at a snails pace now. If my vision would just go back to baseline I may be able to convince myself that I just made this whole thing up.

Just to clarify----the type of tumor that I have is 99% benign meaning that is is not cancerous.

Acoustic Neuromas
The acoustic (eighth cranial) nerve includes branches that mediate the sense of balance and head position (the vestibular nerve), as well as hearing (the cochlear nerve). Acoustic neuromas are benign tumors that arise from the vestibular portion of the acoustic nerve. Surrounding each nerve fiber are Schwann cells that form a substance called myelin that insulates nerves and facilitates electrical conduction. It is from Schwann cells in the vestibular nerve that an acoustic neuroma, also known as a vestibular schwannoma, arises. Schwannomas also may be referred to as neurilemomas, neurolemmomas, and peripheral fibroblastomas.
Acoustic neuromas occur at a rate of one per 100,000 people and make up eight percent of intracranial tumors.
Symptoms
Because of the location of acoustic neuromas, the initial symptoms of these tumors involve hearing and balance. ( I thought I was just fat and clumsy!!) Tinnitus (ringing in the ears--I only have once ina while), hearing loss(slow for about 5 years), disequilibrium, and vertigo are common and caused by compression of the eighth cranial nerve. As the tumor enlarges, it expands in the space of the cerebellopontine angle, a region near the brainstem, and the seventh cranial nerve, which controls the facial muscles. When a tumor is large enough to compress surrounding structures, it may cause headaches, facial numbness and/or weakness, double vision, nausea, vomiting, and hydrocephalus, a blockage in the flow of the cerebrospinal fluid that bathes the brain and spinal cord.

Normal

Well I went back to work today. All in all I think it was a good day. I wasn't attacked by my stapler or any other object from my desk so I think things are looking up. I was called by the Neurologists office that will be assisting Dr. Selesnick. They also want me to do a pre-op with that office. So in a perfect world I could schedule these back to back and get them both done on the same day right? WRONG---at first the nurse was not very sympathetic of my geological location. I even contemplated turning the waterworks on but I think that well has dried up. It seems that the neurotologist does his pre-ops on Fridays and the Neurologist does his on Thursdays or Mondays. It tool some finagling but I ended up getting both of them on the same day.

Fun Filled Day

So I send my daughter to daycare today thinking that I will get my note to go back to work. Well still waiting on the office to call or fax me. I have called 3 times now and even called the NYC office just to make it a race to see who would call me back first. I am betting on NYC !!

Today was full of excitement. I did a phone conference for work (shhh don't tell anyone). Then I got out of bed, ate a muffin with a cup of coffee. I then checked my e-mail, facebook, blog and then made another cup of coffee. (panting now)

Then I did something crazy....I showered. After that I got dressed (cause it would have been funny to do that first) and here I am again on the computer.

After all that exertion I think I need to lay down. I hope tomorrow I can learn to take it easy and not stress out so much!!!!

I have been debating on whether or not to try driving. My vision either has either improved a bit or I am use to it now. I think I would be fine driving around town..maybe....my husband doesn't think so!! Why can this guy do it and not me??? http://news.bbc.co.uk/2/hi/uk_news/england/west_midlands/5313370.stm

I have spent a gorgeous day with my 21 month old today. She is so in that "terrible two" stage. The answer to everything now is "NO".

Wouldn't it be a hoot if you could answer everything like a 21 month old:

Dr: Well you have a brain Tumor
Me: No
Dr: yes you do
Me: No
Dr: You are going to need surgery for that
Me: No
Dr: Don't you believe me
Me: No

I am waiting for the MD office to call me back so I can get a note to go back to work. Yes you heard me....since I have a few weeks their really isn't any reason to torture myself (and my family) anymore by staying home. My dad has agreed to chauffeur me around and work has agreed to have me back (I did hear a rumor that they already had plans to convert my office into a gym)

So I may be seeing some of you real soon!!!!

Dates

So I did receive a call back on a Monday----hallelujah! My surgery date is set for April 14th, my pre-op is on April 3rd and follow up on April 21st all days where I must be back down in NYC. I am excited m nervous and anxious all at the same time!!!

Just another Manic Monday.......

Its Monday morning and do you know where your MD is??? I don't!!! The last I heard is that he was reviewing his very busy schedule to see where he could fit me in. I am sure with the team he proposed to me that would need to be part of my care that it's not an easy task. I will try and be patient today but now have been grounded to my house until they call back. And here is a little humor for this beautiful Monday Morning:

Things you don't want to hear during surgery:

Better save that. We'll need it for the autopsy.

Someone call the janitor - we're going to need a mop.

"Accept this sacrifice, O Great Lord of Darkness!"

Spot! Spot! Come back with that! Bad Dog!

Wait a minute, if this is his spleen, then what's that?

Hand me that...uh...that...uh.....thingie.

Oh no! I just lost my Rolex.

Oops! Hey, has anyone ever survived 500ml of this stuff before?

Damn, there go the lights again...

"You know, there's big money in kidneys. Heck, the guy's got two of them."

Everybody stand back! I lost my contact lens!

Could you stop that thing from beating; it's throwing my concentration off.
What do you mean she wasn't in for a sex change...!

Anyone see where I left that scalpel?

This patient has already had some kids, am I correct?

Nurse, did this patient sign the organ donor card?

Don't worry; I think it's sharp enough.

What do you mean "You want a divorce"!

She's gonna blow! Everyone take cover!!!

FIRE! FIRE! Everyone get out of here!

Home Sweet Home

OK so I am home again. Anticipating another round about of phone calls tomorrow to try and schedule all of my pre-admission bloodwork, physicals etc and to actually get my appointment date set. My vision is iffy at most---I do see better in the evening or when I first get up...its almost unbearable to be mobile in the bright sun.

This is what I see

On another note I was wondering whoever came up with the concept of the easy button. What I wouldn't give for one that really worked right now:

My Day

Well we left NJ around 1:00pm for a 3:30 appointment in NYC which anyone who has ever driven in NYC knows that traffic can be a nightmare. We were making really good time until the inevitable happened. "ACCIDENT ON THE GW BRIDGE ALL LANES CLOSED USED LOWER LEVEL". Which in itself sounded easy enough until you are actually on the expressway heading for the upper level and their are concrete dividers between you and the lower level traffic. We were at a standstill for over an hour. I though that this would be just my luck to be so close and miss the appointment. Finally around 3:15pm when we still hadn't moved an inch I was getting nervous. I called the office to explain and they paged the surgeon since I was his last appointment of the day. And do you know what that big city surgeon said...."I am not canceling the appointment so tell her to just get her as soon as she can". I though to myself,"awwww what a nice guy" and then true panic set in when I started to let that darn BIG nurse Gene out again and thought "There really must be something wrong with me for him to want to wait.

We ended up getting there about 15minutes late and after about a half hour I saw the surgeon. (FYI no cane and he wasn't popping any pills). He explained to me the whole acoustic neuroma diagnosis and treatments. He showed me a slide show and even reviewed my MRI films with me. I really think I could have passed a written exam for medical school at this time if it only included AN's.

SO I guess you are all wondering what he said.............................................well I sort of guessed it ---------He called my alien "medium size" but then went on to say that the way it is sqashing my brainstem right now that their is no way we can just leave it. So having said that their isn't even a chance for the gamma knife therapy or radiation as these big city folk seem to think that too much radiation on the brain stem is a bad thing. I will have skull based surgery in the near future where they will have to remove a piece of my skull behind the right ear. (I will have to shave my hair too..I think I will aim for something like the picture but maybe with the Adk Arc symbol for Les) The surgery will be anywhere from 6-8-10 hours with himself, a neurosurgeon and another kinestiology specialist all involved. Prob a week in the hospital and a few more days at the In- laws before I will be released to come home. He is guessing about 6 weeks out of work but that really depends on allot of other factors. So there was my day in a nutshell........I will be comming home sunday because he did not give us an actual date and I love to travel so much (not).I think tomorrow I am going for a foot massage and maybe a little shopping depending on how good my eyes cooperate.

On the road again

OK we are off.....I hope that by the time we cross the NY-NJ border that the tumor dissolves and that Dr. House thinks I am a quack for wasting his time........but just in case that does not happen I have my own supply of Xanax that another nice nurse gave me a script for. To all my Adirondack Arc followers I hope the nurses don't wreak too much havoc while I am out.

And congrats to Dom and Carla for bringing new Bambino's into the world!!

Me Me Me

I want to thank anyone who is still awake and following my blog. Its nice to know that people really care.(or are incredible nosy...lol)

Well onto me again. I have never really been the type of person that was comfortable with having things all about me or having to be taken care of. This really has been quite a humbling experience so far. I cannot drive (well I can but trying to figure out which of the two roads I see is the actual one - can be confusing), read or even watch TV that well. I can manage the computer ,at times, but the room has to be dark and I have to sit pretty close. (Don't tell Ann or she'll find stuff for me to do ) .

So I guess what I am trying to say is that I thank you all for all of your offers of help and general concern for me and my family. I do not know what the next few days is going to bring but I know that whatever happens that I have a great group of peeps standing behind me. (just like that Verizon commercial....Thanks Cass)

Question and Answers

OK now its time for the best part of the show the Q and A part

Questions #1 What if you have more cushion and cannot fit into the closed MRI?

Answer: They do have Open MRI services in Plattsburgh which can be used for both "more cushioned" people and people who do not feel comfortable in confined coffin-like places

Question #2 How did you ever sit in that tube without moving a muscle for over an hour and a half?

Answer: Please see post below in reference to "Very nice nurse and Xanax"

hmmmmmmmmm

Well I can honestly say that I can check a few more things off of my list of "health concerns" I have had. Today I woke up with shortness of breath and my stomach was in knots. I have never experienced a true panic attack but I think I was on the verge.

I got to the hospital promptly at 9am and they started another IV to push the contrast into me. The MRI suite I can honestly say was not built for, how shall I put this, people with a little more cushion. I was asked from a very nice nurse if I was OK with small places and then blurted out that I may start freaking out at any moment. Then the very nice nurse gave this very anxious nurse allot of Xanax. So If anything sounds strange in this post I am a bit sedated still.

I was originally told that the MRI would last about 1/2 hour or so but later found out that they ordered more tests and I was actually going to be inside this "coffin tube" for an hour and a half at least. Once again thanks nice nurse for the xanax.

After this I quickly went to my appointment for my audio test. I definitely have right sided hearing loss with neuro defects as seen with most people with this type of brain tumor. He did say that if I don't lost any more hearing this could be easily corrected with a hearing aid in the future.

FYI

For those of you that are a little challenged with all this blog stuff......if you would like to leave a note just click on the "comment" word under a posting...a page will come up and it will ask you to log in....then post away

Rolling Rolling Rolling

OK so I guess all of my persistance paid off. I have an appointment in NYC on Friday with Dr. House. Ok maybe they just look alike but I swear that if comes out of the office with a cane I will bolt.

Everything is falling into place now. First I will go to have an MRI in the morning. Then right after I will go and visit Mr. Audiologist for a study to prove I am not lying about my hearing loss. Thursday afternoon we will be leaving for New jersy and Yes (I want applause here) I have an appointment with a very prestigous surgeon Dr. Selesnick http://www.weillcornell.org/physician/samuelselesnick/index.html
Boy I was so anxious to get the ball rolling and now I am so anxious that everything is going so fast. My sister will continue to update my blog when I am unable. She's not as cute but just as Sarcstic. (lol)

This one deserves its own post

So I got in and spoke very openly with my medical provider today. She stresses that this needs to be taken care of fairly quickly to avoid long term affects . I guess the game plan maybe going to Columbia Presbyterian in NYC. I am now waiting again to see if they accept me and when I will make the trip. I hope I don't have to wait long!!
On another note I would love to hear from everyone who is reading this and hasn't fallen asleep yet!! Please feel free to leave lots of comments as It would be a great way to pass time and I seem to have alot of that now!!

Tuesday Part I

And yes just as the title says I am sure their will be many parts to today. The First part is when I woke up this morning and called the doctors office again. You know the one that didn't even call me back yesterday. Well the very nice receptionist who remembered me from yesterday could not give me a straight answer if she thought that coming into the office would make a difference or not. I very politely asked her to make me an appointment and she stated she was sending another note back to the provider and was going to ask her whether I needed to be seen. Then stated if I don't hear back by 4pm then I should call again. This is turning out to be Mission Impossible. How many phone calls do you think it will take to get them to refer me to a neuro surgeon??????


PART II
I have been ackknowleged!!!!! The office just called back and apologized for blowing me off yesterday and they want to see me at 1:00pm today (thats 4:00 in Doctor hours in case you were wondering). I guess they are researching a place that specializes in this procedure and Burlington is not that. I will update everyone after the appt today.

Fu@&$% Monday's

I guess I know why I hate Mondays. Not only is it the first day of the work week but its also the day that NO ONE WORKS.
I got up with some optimism this morning. I called the neurologist's office just as I was instructed to do. I was met by a very stern receptionist who even after hearing my whole story regarding "Friday" still had the nerve to tell me "Ma'am I don't know what you want but we cant fit you in". I think at this point if I could have jumped through the phone I would have. I know that she has no idea what kind of impact the recent news of having been diagnosed with a brain tumor but man a little compassion would have been nice. I guess at this point I felt I wasn't getting anywhere with politeness so I did the next thing that came to me.......................I know most of you that know me would think this would be to turn into "super bitch" mode but actually the waterworks started. I could tell at this point it was making even a small dent in the heart of the "Ice receptionist" so I thought I would throw in a few sniffles and sighs. She then says "hold on". She actually went and spoke to the doctor and at least referred me back to my regular doctors office for a referral to Fletcher Allan.
I immediately called my primary MD office and now being almost 5pm have still not received a phone call back. Oh yes I did get a call from a nice nurse who swears she left a note on the providers desk and yes I have even called back once just to make sure that they didn't forget about me. Here I am now...NO REFERRAL, NOT EVEN A FREEGIN CALL BACK.............I am hoping that in my past and I know certainly in my future career in the health field I will remember these past few days. I would never imagine leaving a patient "hanging like this". All people ask for is some acknowledgment that what they feel is important. I will continue my mission tomorrow I guess!!

The Weekend

So I made it through the weekend with only about 30-40 meltdowns. I still cannot see unless I close one eye and then I end up with headaches caused by the strains. I am so anxious to find a doctor to treat me so I can move on with my life. I have never been a good relaxer type person. So I look forward to Monday a.m. so I can call and maybe get some answers.

Friday, March 6th

What was to start out as a normal day has ended up being the day that will burn a hole into my memory for the rest of my life. It started out simple enough with being awakened at 6:15am by a toddler who had scaled her crib for the first time and was now standing at my head asking "momma I want juice". Half asleep I did get up and get juice and then turned on whatever cartoons I could find.

I decided today instead of rushing off to work as I usually do I would take it easy and sleep in for a little while. I woke up at 9:30am and immediately came out to the living room. To my surprise there seemed to be extra furnishings. Everything in the room appeared to have a twin. I can tell you you that if you have ever experienced a sudden change in your vision you might know what I am talking about. But after having 34 years of better than perfect vision, this was enough to send me into a panic attack.

After speaking to my husband (the optimist) I decided that my first course of action would be to get into see my optometrist to rule out any eye problems. After this turned up clean I was then advised to continue my journey to the Emergency room for an evaluation.

After spending a very long time at the SLER I was then taken to have a CT scan. Now I had one about 15 years ago for some sinus trouble and little did I know that they now take about 5 minutes to complete as compared to the 30 plus minutes before. As always I was expecting a "we found nothing" and to go home for some much needed rest. The course of events from this point on still haunt me and I expect at any moment to wake up from this awful night-mare.

When the CT tech sat in her little room and spoke on the phone first before coming to get me I had a feeling that I was not going to be sent home without a clue to what was going on. She very quickly asked me to sign a consent for contrast and then mentioned something about follow up MRI. At this point even though my years of working in the medical field prepared me I still could not help but blurting out "what the heck did you find". She was very pleasant and reminded me that the MD would have to disclose that. I guess I started feeling sure panic at this time and asked to be brought back to my room.

Acoustic Neuroma is what they are calling this grape sized alien that I have in my head that his causing me so much havoc at this time. I can't tell you that no matter how many times someone tells you that it is usually benign and that they can do surgery to fix it that you are just ultimately horrified that you have a TUMOR in your head.