Author Topic: It grew back  (Read 1997 times)

MissMolly

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It grew back
« on: January 31, 2019, 07:23:01 pm »
10 years post surgery. Was feeling familiar symptoms two-three months ago and an MRI confirmed what I suspected. 5mm by 14 mm. Same size as the other one. I'm devastated. The symptoms keep getting worse. Anyone else have this occur?
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

buzneg

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Re: It grew back
« Reply #1 on: February 28, 2019, 03:54:51 pm »
Same side or the other side.

Sorry to hear it.  Speaking of, can you at least still hear on one side?  At least partially?
March 1, 2018 - Hearing loss left side, acute vertigo
March 2, 2018 - MRI show 13 x 7 mm AN (probably growing)
May 2018 - ENT/audiologist indicate 100% hearing loss on left side is permanent
June 29, 2018 -  GK at Wake Forest in NC
Dec.2018 -  follow-up MRI shows zero growth

notaclone13

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Re: It grew back
« Reply #2 on: February 28, 2019, 05:44:33 pm »
So sorry to hear this news Miss Molly.  I assume that you no longer needed to get annual or bi-annual MRIs post surgery because so much time had elapsed. I believe one of your previous posts indicated that you retained some hearing in your AN ear after the mid fossa. Has the re-growth affected your remaining hearing?  Since the AN is still relatively small, are you considering a radio-surgical approach? I know of several people with large ANs that had  debulking surgery to remove most of the tumor,  followed by CyberKnife a few months later to zap the remnants left behind.   I know 2 people who have had this approach and both are doing well. Your situation is similar, except of course that 10 years  rather than a few months have elapsed since your surgery. What have your doctors advised?  I bet they were equally shocked by the re-growth after all this time.

MissMolly

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Re: It grew back
« Reply #3 on: March 14, 2019, 09:27:01 am »
I foolishly stopped going to followup MRIs as for the first six years there had been no change.  I was going through some life changes myself and the MRI slipped my mind.  I am having quite a bit of tinnitus and my hearing aid doesnt help, leading me to believe there has been changes in hearing. 

Dr. Loeffler at Mass General stated I would not be a good candidate for proton beam or gamma knife since that may swell the tumor and exacerbate symptoms for a year or more until it reduces in size.  I was hugely disappointed in this. 

I am finding it very frustrating finding someone who will be able to assist me in symptom management.  I've been doing it on my own.  I met with my PCP the other day and she is assisting with referrals to second opinions. 

The frustrating thing is that Dr. Loeffler stated my vestibular nerve was cut during the last surgery.  My recollection from my appointment with the neurosurgeon was that there was vestibular nerve left.   The neurosurgeon office is researching the surgery notes (change in computer sytem makes it tough) to figure out what happened exactly. 

And why, if the vestibular nerve was cut, am I having vertigo and balance issues?  UGH!! :'(
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

notaclone13

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Re: It grew back
« Reply #4 on: March 14, 2019, 12:27:23 pm »
Have you returned to see Dr. McKenna; since he did the original surgery he should know if your vestibular nerve was cut or not. Just wondering, is Dr. Loeffler the only doctor you have seen since the re-growth was discovered? Did he say why you are not a good candidate for proton therapy?   

MissMolly

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Re: It grew back
« Reply #5 on: March 19, 2019, 08:27:29 am »
I met with Dr. Carter at Mass General briefly.  I'm reluctant to go through surgery again so he sent me to Dr. Loeffler who felt that Proton Beam or Gamma knife would not be appropriate since my symptoms may spike for a year or so as the site may swell and cause an increase in symptoms.  Considering surgery again  while at the same time, researching symptom management strategies.  j
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

 


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