How soon should I have the treatment? Please help..

[sunshine16]

I'm new to this site, and glad I found this, It helps me a lot on understanding about AN.   Here's my story.  Need your help, please...

I'm 29 yrs. old. I live in Las Vegas.  I was diagnosed w/ Acoustic Neuroma 2 weeks ago.  It's a large tumor (about 4.5 cm) that is pushing on my brain stem.  It all started w/ losing of hearing and constant ringing on my left ear.  I have this problem for the last 6- 7 years.  I had a hearing test back then, test showed I'm gradually losing my hearing.  But was never ordered to have MRI until 2 weeks ago. I decided to have my ears checked again because of the pain now I feel in my left ear (happens once in a while).  After the MRI result, my main ear doctor referred me to another specialist.   I met w/ the ENT specialist and then the Neurosurgeon.  Both said the same thing, my treatment is limited to surgery. 

My question is, how soon should I have the treatment?  Both of my insurances have approved the surgery already, but because of the busy schedule of both doctors they won't be able to do the surgery soon.  I have to wait till December, maybe 2nd or 3rd week. Is it okay to wait that long?  Considering the size and location?  And the tumor is pushing the brain stem???  I feel okay, except I get headaches, get really dizzy in the morning, my left face feels a little numb, and I'm having a hard time reading on my left eye. 

I will appreciate every response... Thank you!

[becknell]

Your doctors who have seen the scan and examined you would be most qualified to answer this question, but AN surgery is not considered emergency surgery and most patients wait some weeks or months between diagnosis and surgery or other treatment, even if the tumor is pressing on the brain stem. The larger the tumor, the more imperative it becomes to do something quickly, of course. My husband had a large  (3.5 cm) tumor pressing on the brain stem and we waited almost 3 months between diagnosis and treatment to consider our options. He was beginning to have some headaches and left-sided head pain as you described, so we didn't want to wait very long.

[Kathleen_Mc]

Sunshine16: your doctor's are the one's who are best qualified to decide if your surgery can wait until Dec. or not, if your life is being put at risk by waiting that long I would hope your doctor's would refer you to someone who can do the surgery sooner. I waited about 2 1/2 weeks between diagnoses and surgery and the surgeon was picked based on who had the soonest o.r. time available (at least as far as I understand from my parents, the doctor was picked by my neurologist on his having recieved a call from the tech. immediately post c.a.t. scan) by the time I found out what was wrong with me the doctor was picked and the surgery booked, I was also on surgeon's "cancellation list" in case there was a chance the surgery could be done sooner. What I am trying to say is my surgery needed to be done a.s.a.p. and this was the determining factor in who the surgeon would be and I would hope all doctor's would refer patient's on if the needed surgery sooner then thier caseload would allow them to do it. Then again I am speaking as a Canadian with experience in the Canadian health care system and I understand things work differently in the U.S. with the insurance companies etc. Kathleen

[sunshine16]

Thank you guys... I will call my doctor and ask him.  I guess a month wait is not that bad. 

[sunshine16]

Got the approval letters from both of my insurance.  And wondering what are these things? 

1) Place Catheter in arteries..

2) Place needle/catheter in aorta..

they both sounds painful....... 

[Joef]

send the MRI films to "House" http://www.houseearclinic.com/contact.htm to get a free call back .. they are the defacto experts on AN's

[LaMar]

I was diagnosed in August with a 3cm tumor and because i am military i wanted to wait until the military could bring my husband home from Korea.  i dont have surgery unitl december and although the tumor they told me would not grow between then and now has, I haven't noticed a change.  Plus you have to think that you have had it for 6-7 years and a month probably wont make a signifigant change....  GOOD LUCK!

[sunshine16]

Well, I'm going to House Ear Clinic in LA tomorrow to have a second opinion.  Going to see Dr. John House.  I still don't know when my surgery will be (here in Las Vegas, IF), still waiting for the day , but it seems like it will be on the 15th of December.

[kristin]

sunshine...

this could be a guess, but when i woke up i had an IV (or catheter i guess...IV by name means in a vein) of sort in an artery in my left wrist.  it was for monitoring blood pressure during surgery. thankfully they put it in after i was under anesthesia, becuase you should have SEEN this thing when they took it out! it was like 4 inches or longer!! OUCH! it was way more painful than your usual IV. maybe your insurance is approving the catheter? or requesting that the catheter/blood pressure thing be used during your surgery? when i got home and was looking through all the doctors notes, i saw that they did labs on the day of and day after my surgery, but don't remember them drawing blood. my mom (who is a nurse) said that they took it from the catheter. (it really has a name..i'll see what i can do to find out what the name is).

kristin

[Cheryl R]

The IV thing you are talking about is called an arterial line as it directly into an artery instead of a vein like other IV's are.        They  hurt much more when inserted than your standard IV which is into a vein and is when is done when you are out.           Cheryl R.

[kristin]

aterial line! that's it..thank you cheryl!

[sunshine16]

I decided to have the surgery @ Ear House Clinic-St.Vincents Medical Center, on Tuesday.  5 days after my initial appt. w/ Dr. House.  I've been strong for the last three weeks, but today is a different story.  I am just totally scared.  I have no doubt that I've chosen a good doctor and hospital, but I'm mentally exhausted.  I guess it's normal to be afraid. I'm scared of root canal, what more of brain surgery? 

Thanks for this wonderful site......... and wonderful people!

[shoegirl]

Sunshine,

I can understand being scared, I would be too.  I am not faced with the same situation as you but there are days when I am very upset, anxious, and scared.  I think what you are feeling is to be expected.  I have heard from many people on this site that House is the best place to have surgery.  They are excellent.  You have chosen the best place for the best possible outcome.  That is all you can do.

I am sure as you get closer to Tuesday your feelings will be stronger, or perhaps you will find a sense of relief that it will finally be over.  I hope that you do.  Try to rest and relax as much as possible so that you are strong and health for surgery.

I will be thinking of you and wishing you all the best.  I will say a prayer for you on Tuesday.  Please keep us posted on how you are doing once you feel up to it.

Good Luck and Best Wishes,
Suzanne
 

[dpericoni]

Sunshine,

I am two weeks post surgery from House. You made the right decision. I had a small tumor and I lost my hearing but, I couldn't have been at a better place with great doctors. I have never been in the hospital before and was very impressed with the staff on the sixth floor. I tried to leave on day five but was too dizzy so I had to stay two more days. Don't worry.

Darlene
5mm by 8mm
middle fossa

[sunshine16]

thank you both..... I will definitely come back here and keep you posted.... 

My doctors will be Dr. John House and Dr. William Hitselberger.   I haven't met Dr. Hitselberger yet, but Dr. House is a down to earth person...  He made me feel at home...