Author Topic: Regrowth Options  (Read 4304 times)

Melissa778

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Regrowth Options
« on: October 18, 2013, 07:44:27 am »
A bit of history before I get into my question:

2008 I had translab for my 1.6 x 1.6 AN
2008 I had GK to zap the remaining tumor they did not remove becuse it is esentially "wrapped around" my facial nerve.
2009 scan showed tumor size to be 1.1 x .4
All clear scans until this time last year, 2012.  scan showed size to be 1.7 x .6
recent 2013 scan shows tumor size to be 2.0 x 1.0

I'm at a loss for words.....I am a 35 year old mom to two and I try to remain as active as possible.  I have chronic fatigue issues as well as trigmeinal nerve issues.

My options are very limited.  I have been told by my docs that more GK is NOT an option that the low dosage I am allowed to have would not be enough to benefit me.  I certainly am very fearful of another surgery and watch and wait doesn't seem to be an option for this growing bugger.

I've done alot of internet research and have seen that there are clinical trials and some uses of chemotherapy for AN's.  Has anyone ever had or heard of this?  I'm looking for answers and opinions of course.

The other hiccup is that my fantastic AN doc retired this past year and I am seeing a very new, young doc that I don't have much faith in.  Has anyone been to Mayo for AN treatment and what are your opinions of Mayo.

**Disclaimer....Please do not suggest House.  They are not an option for me as my insurance will not cover treatments there.  As I said, the affordability of House does not fit for me.  I am located in Ohio and currently see a doctor at the Michigan Ear Institue.

Thanks All!
Melissa
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Trippy

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Re: Regrowth Options
« Reply #1 on: October 18, 2013, 01:26:22 pm »
Sorry about your growth.  PM'd you.

It is what it is

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Re: Regrowth Options
« Reply #2 on: October 18, 2013, 02:54:01 pm »
I am sad to hear your tumor is growing!  It must be devastating to be young with young kids and needing to deal with this again!  It is great to hear that you are looking for specialists in AN tumors with lots of experience.  I don't know any doctors in your area, but hopefully you'll get responses from people who do.  House was out of network for my insurance as well, but eventually I was able to negotiate around the out of network piece so they picked up a percentage and then negotiated with House for what wasn't covered.  There might be some insurance gurus on here who could help you with this?  With caring, karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Denise S

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Re: Regrowth Options
« Reply #3 on: January 25, 2014, 04:18:28 am »
I'm also from Michigan and we've probably crossed pathes on here before ;-)

I'm thinking.....was Kartush at MEI your dr??  Who have you seen now at MEI?
I'd see what their options are and the. Also see one at U of M!?!?
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

It is what it is

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Re: Regrowth Options
« Reply #4 on: January 25, 2014, 05:06:36 am »
Aspirin Intake May Stop Growth of Tumors That Cause Hearing Loss
Jan. 24, 2014 — Researchers from Massachusetts Eye and Ear, Harvard Medical School, Massachusetts Institute of Technology and Massachusetts General Hospital have demonstrated, for the first time, that aspirin intake correlates with halted growth of vestibular schwannomas (also known as acoustic neuromas), a sometimes lethal intracranial tumor that typically causes hearing loss and tinnitus.

Motivated by experiments in the Molecular Neurotology Laboratory at Mass. Eye and Ear involving human tumor specimens, the researchers performed a retrospective analysis of over 600 people diagnosed with vestibular schwannoma at Mass. Eye and Ear. Their research suggests the potential therapeutic role of aspirin in inhibiting tumor growth and motivates a clinical prospective study to assess efficacy of this well-tolerated anti-inflammatory medication in preventing growth of these intracranial tumors.
“Currently, there are no FDA-approved drug therapies to treat these tumors, which are the most common tumors of the cerebellopontine angle and the fourth most common intracranial tumors,” explains Konstantina Stankovic, M.D., Ph.D., who led the study. “Current options for management of growing vestibular schwannomas include surgery (via craniotomy) or radiation therapy, both of which are associated with potentially serious complications.”
The findings, which are described in the February issue of the journal Otology and Neurotology, were based on a retrospective series of 689 people, 347 of whom were followed with multiple magnetic resonance imaging MRI scans (50.3%). The main outcome measures were patient use of aspirin and rate of vestibular schwannoma growth measured by changes in the largest tumor dimension as noted on serial MRIs. A significant inverse association was found among aspirin users and vestibular schwannoma growth (odds ratio: 0.50, 95 percent confidence interval: 0.29-0.85), which was not confounded by age or gender.
“Our results suggest a potential therapeutic role of aspirin in inhibiting vestibular schwannoma growth,” said Dr. Stankovic, who is an otologic surgeon and researcher at Mass. Eye and Ear, Assistant Professor of Otology and Laryngology, Harvard Medical School (HMS), and member of the faculty of Harvard’s program in Speech and Hearing Bioscience and Technology.:

Journal Reference:
Tjeerd Muurling, Konstantina M. Stankovic. Metabolomic and Network Analysis of Pharmacotherapies for Sensorineural Hearing Loss. Otology & Neurotology, 2014; 35 (1): 1 DOI: 10.1097/MAO.0000000000000254

Massachusetts Eye and Ear Infirmary (2014, January 24). Aspirin intake may stop growth of tumors that cause hearing loss. ScienceDaily. Retrieved January 25, 2014, from http://www.sciencedaily.com­ /releases/2014/01/140124110705.htm

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Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

LakeErie

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Re: Regrowth Options
« Reply #5 on: January 25, 2014, 09:24:26 am »
Since you are in Ohio, you could try University Hospital in Cleveland. They have an Acoustic Neuroma Management Program with experienced otologist/neurosurgeon teams. Doctors did fellowships at House and Barrow in Phoenix. UH also performs both GK and CK. I have read posters on this forum with good experiences there.
My own surgery was at Cleveland Clinic, but my surgeon is leaving the Clinic Feb 28 after almost 20 years doing all the skull base tumors for the Brain Institute so he is not an option for you. Good luck.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

joanna_an

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Re: Regrowth Options
« Reply #6 on: January 25, 2014, 06:41:51 pm »

Thanks Karen for the information. Looks promising. I would be interested to know the dosage.
31 years old female
Left AN 18x16x13mm diagnosed on the 17th of October 2013
21mm on the 19th of February 2014
Hearing loss, tinnitus
SRT 12th March 2014

grace

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Re: Regrowth Options
« Reply #7 on: January 26, 2014, 12:17:00 pm »
Hi, I am so sorry to hear of all you are and have been going thru. I saw a site I was interested in but is far for me but is in Ohio, called Mayfield Clinic and has teh hope Lodge to stay at for recovery. They had a few AN patients that had wonderful outcomes from the AN surgury. You may want to check it out.. love & Health,Grace 

Kathleen_Mc

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Re: Regrowth Options
« Reply #8 on: January 27, 2014, 04:45:07 am »
Melissa: YUK! Sorry you are having to go through all this. I had translab. for a large AN and then also had the regrowth removed surgically. The first I was single, the regrowth was diagnosed when my son was 2 months old, I went on to have my daughter and waited until she started school to have the regrowth removed, surgery the second time around was much easier in terms or recovery. I had always talked to my children about "the bump" in my ear and that I would have to have surgery, they were absolutely fine while I was in hospital and recovering at home, teachers who knew my son (who tends to have anxiety issue's) were not aware anything was amiss at home!
I hope you soon are able to have this "taken care of" and can focus on getting on with life beyond AN!
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)