Author Topic: Newbie with a few questions.  (Read 5710 times)

turbomom

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Re: Newbie with a few questions.
« Reply #15 on: July 01, 2010, 04:10:47 pm »
Hi SDW79,
I thought I would share my story and decision to your question. Almost a year ago today I found that I had a 9mm x15mm AN. It started with a fullness in my hear and a small hearing loss. I went to an emergicare facility since it was the weekend to have my ear checked- out. The PA told me I had an ear infection which I questioned outloud, "how can that be, I have not had a cold nor do I have allergy problems. :o" Her reply was, "Well that ear looks different from the other ear." Take the antibiotics  and if you do not sense any improvement, then go to an ENT. Two weeks later, Iwent to the ENT. Had a hearing test(which showed some hearing loss). He said it could be due to one of 2 things: a sudden sensory hearing loss or an AN(which would have to be ruled out by an MR)I. He recommended a round of prednisone to see if that would clear anything up. Two weeks later no difference so I had the MRI and on the way out the door, the tech says "Good Luck". Well that sort of answered my question before I got the call from the ENT. Soooo from that time, I went to an otolaryngologist. He gave me several options based on the size of the AN: wait and watch for 6 months and then repeat the MRI or talk to a radiologist. I choose to wait 6 months and repeat the MRI. There was no growth and the oto-doc said to wait another 6 months and repeat MRI. Well during that 6 month period, I started my own research, looking into all the options available and found a doctor here in NC that has many many years of experience removing these "things" and actually trains other neurosurgeons.  I made an appointment with him and felt very comfortable and confident in his advice, which was surgery. He felt that based on the size of the tumor he could preserve my remaining hearing. So for three months I processed all the info I could on all my options. I have choosen surgery(which will be July 7th) based on several reasons. I could have the gamma knife done here in NC, but he pointed out several things: I would still have my hearing for 2-4 years, but overtime it might decreased, it is usually difficult to do the GK without some damage to the balance nerve and there is no documentation to the effects that radiation will have on the brain/body 10-20 years down the road.He also does not recommend radiation for young patients(i'm 47) The neurosurgeon stated that with the surgery, he could remove the tumor(because it is small), and preserve my hearing. He monitors the auditory brainstem response and facial nerves during the procedure. With all this being said, which I know is alot ::), I felt best with getting the tumor out!!! That of coarse is an individual decision; one that I have prayed daily about. Many people choose other methods and are very satisfied with their decision and outcome. I pray that you will take time and weigh your options and find peace with your decision. Let me know if you have any questions.
Lisa
tinnitus, mild hearing loss, occasional light-headiness, rare imbalance. Diagnosed on 07/09; 14x9x8mm intra and extra canalicular of left ear. Repeat MRI on 1/15/10...waiting for radiologist to read, but on quick review little growth shown.

Cheryl R

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Re: Newbie with a few questions.
« Reply #16 on: July 01, 2010, 08:24:52 pm »
Good for you and I hope you like Dr Gantz.      I feel very lucky we have him in Iowa.      The wait at the clinic can be a bit slow so just take something to read.      Just remember he is not for radiation so if interested in checking that out will need to see something else.                  I wish you well!                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Denise S

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Re: Newbie with a few questions.
« Reply #17 on: July 02, 2010, 09:08:46 am »
Well i had an appointment with Dr. Chicoine at Washington University today.  He thinks surgery is my best option since I am young and the tumor is small. I told him I wanted to know more about the gamma knife so they fit me in to see Dr. Simpson a radiation oncologist and discussed the issue with him.  Now i am stuck with making the decision of either surgery or Gamma Knife. I believe the gamma knife would be the best for me but the surgeons do not believe so since I am young. But from what I understand there has not been any long term affects such as developing cancer from the Gamma knife. Am I correct. I am going to make my decision tomorrow.

Well, I know you are at what I call the HARDEST mental part of this journey....what to do.   No one can make the decision for you and it stinks because no matter what option you choose there are no guarantees to what the final out come or future may bring.    One thing I stress to people with smaller tumors is WATCH & WAIT first!    Unless you doctors have told you good reasons not to.   But there have been enough people that have done watch and wait and had no changes in symptoms or growth for quite some time.   As one said above, be sure to get the info. from the ANA.

My personal situation WAS watch & wait for 2 1/2 yrs. because doctors were watching another brain tumor.   That one stayed stable, but this little AN started growing faster than normal.   When it started affecting things I decided to have it surgically removed.  I looked into radiation & my neurosurgeon actually does both surgery & radiation.   Due to my age and not knowing much  long term after radiation, he recommended surgery.   I personally didn't find much I liked for radiation because of it being newer and some people still end up with symptoms or surgery down the line.   Have to say though, surgery isn't a piece of cake eitherfor some, and it takes plenty of time for the brain to heal and readjust.  But, at least I am not worrying anymore about what is going on in there.    

Hopefully I'm not to negative, but you do have time.   I know a couple people on here who have actually stated they wished they wouldn't have just rushed into any decision.

Good luck and BE SURE TO GET THAT ANA info.  ;D
« Last Edit: July 02, 2010, 09:21:04 am by Denise S »
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI