Author Topic: Very worried  (Read 23115 times)

ANSydney

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Re: Very worried
« Reply #15 on: November 29, 2016, 05:09:47 am »
This is odd. The general recommendation is that tumors up to 3 cm in diameter (not including the internal auditory canal) are best treated by radiosurgery.

To quote the conclusion from bmjopen.bmj.com/content/3/2/e001345.full.pdf , "The available evidence indicates radiosurgery to be the best practice for solitary vestibular schwannomas up to 30 mm in cisternal diameter"


sylviamorris

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Re: Very worried
« Reply #16 on: December 02, 2016, 11:20:58 pm »
Very worried - I would highly recommend MD Anderson in Houston Texas.  Dr. DeMonte is the head of the Brain and Spine clinic and specializes in skull base tumors.  I thought you had to have cancer to go there until I was diagnosed and started doing my research.  I was told my tumor was too big for radiation, but when I went there, was told differently.  Given all the information and made the decision for Gamma Knife over the surgery.  I am 1 year out from the radiation and just had my one year check up.  My tumor not only stopped growing, but has also shrunk.  I still have the same amount of hearing I did a year ago.  I have balance issues, but my life is wonderful.  My husband and I travel full time since retiring and now I am taking care of my new 4 month old grandbaby while my daughter and husband work.  Have been doing this for 2 months and will continue until he is 7 months old.  I was worried about this because of getting up and down, doing all the things you do with an infant, but it has been fine.  I would highly, highly recommend getting a second opinion and getting an appointment with MD Anderson, Dr. DeMonte if possible. 

ANSydney

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Re: Very worried
« Reply #17 on: December 12, 2016, 09:46:23 pm »
Willbur, you mentioned that you you had a seizure about 4 years ago. During that seizure, did you have impact to the right side of your head?

I fainted and had a point hard impact to the right side of my head near my ear just over 5 years ago. This may have been the event that triggered the AN. I've had hearing loss symptoms for about 3 years, but never followed through until about 4 months ago at which time I was diagnosed.

When are you planning to have your follow up MRI?

I've been doing research on AN natural growth rates and the latest paper I'm researching ( http://link.springer.com/article/10.1007/s00405-008-0791-9 ) states that for extrameatal tumors like us, with long duration of hearing loss, no unsteadiness/vertigo and sudden hearing loss, the chances of growth more than 1 mm in 2 years is only 12.7%. I'm going to do a detailed article review soon.

Dee-dee

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Re: Very worried
« Reply #18 on: December 14, 2016, 09:52:06 am »
Hi
My AN was 2.3 cm (same as yours) and I had gamma knife at Columbia University five years ago. Every AN is different, so all I can do is tell you about my experience and decision making. Yours may be completely different. Shape of tumor and age and other factors also come into play when deciding treatment options.  After exploring all the options and visiting 4 top experts in this tumor in New York I chose gamma knife.  Despite the fact that I still have many symptoms, I don't regret going the gamma knife route so far. I have no growth. Am I the same as I was before the AN, NO. I am on medications, with lots of symptoms, but have made peace with myself and the new normal that is me. I am happy to be around to watch my son grow and prosper into a fine young man, now in college.  My AN is still the same size 5 years post gamma knife. I had swelling of the tumor post gamma knife, but it went down to same size eventually. My tumor never shrank. I also developed 5 nodules on my thyroid about one year post gamma knife which are being monitored lest they turn cancerous (so far so good, no cancer).  They don't know if it is related to the radiation.  But I still do not regret going the gamma knife route. 

When I was exploring my options, NYU recommended surgery because my tumor was too large for gamma knife and I was too young (middle aged). Columbia U  recommended gamma knife. The doctor at Columbia said surgery was barbaric in this day and age (5 years ago).  The 4 surgeons I consulted also could not agree on how to approach the surgery -- go through the ear and destroy everything in the ear (which I didn't like in case stem cell research someday can regenerate the nerve),  or to go from the back past the brain stem (which my husband, a doctor, was vetoing as too dangerous).  Then they had different opinions as to whether to put a titanium plate or to leave the skull unprotected without it, with only skin covering the hole after the surgery (I hope I am not scaring you). NYU leaves it open because they felt the plate causes more problems and headaches than it's worth; Columbia and Mt. Sinai doctors put in the plate to protect the brain and not leave the hole with just skin covering it. Weil Cornell was recommending watch and wait for a while longer. My medical family (brother, father, husband doctors thought this was crazy).  So with all these differing opinions among the surgeons, I chose gamma knife.  This was five years ago.  So I don't know if any progress has been made on any of these issues, but I am mentioning them so you can ask.  A lot depends also not just on the size of your tumor but it's shape.  Mine was (and still is) like a small ice cream cone with most of the tumor, the ice cream part, pressing on the brain stem and the cone part is inside the ear canal. In your case it may be different, so I would go see a few experts and make sure they are experts in AN with at least 500 AN patients under their belt during their career.

I too was very worried and freaked out when I got the diagnosis.  But it will be OK. I promise.  Hang in there.
D
2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

ANSydney

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Re: Very worried
« Reply #19 on: December 14, 2016, 03:36:56 pm »
Dee-dee, thanks for taking time out to let us know about your symptoms and journey. I found it informative, particularly the bit about different institutions providing different best advice. Gamma knife from Columbia University , craniotomy from NYU, Mt Sinai and two others (who couldn't agree on which type of surgery) and watch and wait, at least initially,  from Cornell. Your tumor was the same in all cases, but you received every conceivable best advice. It demonstrates the lack of consistent knowledge for this rare problem.

The variations on the titanium plate (presumably with methyl methacrylate) was also interesting. Leaving the drilled out bone aas just a hole I hadn't heard of. I've heard of others replacing the bone that has been drilled out.


ANSydney

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Re: Very worried
« Reply #20 on: December 14, 2016, 03:48:07 pm »
Forgot to mention that there is also variability in the hole they drill in the skull for a craniotomy. The size appears to vary from just under 20 mm up to 35 mm!

Willbur

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Re: Very worried
« Reply #21 on: December 15, 2016, 11:18:06 am »
Willbur, you mentioned that you you had a seizure about 4 years ago. During that seizure, did you have impact to the right side of your head?

I fainted and had a point hard impact to the right side of my head near my ear just over 5 years ago. This may have been the event that triggered the AN. I've had hearing loss symptoms for about 3 years, but never followed through until about 4 months ago at which time I was diagnosed.

When are you planning to have your follow up MRI?

I've been doing research on AN natural growth rates and the latest paper I'm researching ( http://link.springer.com/article/10.1007/s00405-008-0791-9 ) states that for extrameatal tumors like us, with long duration of hearing loss, no unsteadiness/vertigo and sudden hearing loss, the chances of growth more than 1 mm in 2 years is only 12.7%. I'm going to do a detailed article review soon.

I will be doing my MRI next month. I will report back based on whether or not it is shrinking.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

ANSydney

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Re: Very worried
« Reply #22 on: December 15, 2016, 03:22:32 pm »
Willbur, you mentioned that you you had a seizure about 4 years ago. During that seizure, do you remember having an have impact to the right side of your head?

Willbur

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Re: Very worried
« Reply #23 on: December 20, 2016, 09:37:09 am »
Willbur, you mentioned that you you had a seizure about 4 years ago. During that seizure, do you remember having an have impact to the right side of your head?

No I don't unfortunately.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

voron999

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Re: Very worried
« Reply #24 on: December 20, 2016, 04:31:17 pm »
I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up.

Hi there!
Where in Wisconsin, may I ask?
I myself in Madison, WI.
Thanks.

PS: This is my first post on this forum as I suspect I might have AN (most all the standard symptoms listed here).
I will start my own topic..
Jan 11, 2016: 4 x 3 mm nodule in the left ......consistent with an acoustic neuroma.

Willbur

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Re: Very worried
« Reply #25 on: December 23, 2016, 07:25:44 pm »
I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up.

Hi there!
Where in Wisconsin, may I ask?
I myself in Madison, WI.
Thanks.

PS: This is my first post on this forum as I suspect I might have AN (most all the standard symptoms listed here).
I will start my own topic..

He is in Madison up at UW Hospital. They specialize primarily in retrosigmoid there. I never went because docs here mentioned that translab would be better approach.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

leapyrtwins

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Re: Very worried
« Reply #26 on: December 29, 2016, 11:17:24 am »
So I saw a doctor here who does translab surgery and said that at this point there is no way to preserve my hearing. Should I seek a second opinion or should I just move forward with it? Ive already opted out of radiation because he said it can make it worse. Lastly, he pointed out there are dark spots on it which indicates that the tumor is cut off from blood flow and it should be easier to remove. Any input would be helpful.

Hi, Willbur -

here's my take on your situation.  You need to see a doctor who does both radiation and surgery to get an opinion of what's best in your situation.  Most docs will radiate an AN up to 3 cms - so unless there is an issue with the location or some other reason I'm not thinking of here - radiation should be a possibility for you.  You may decide that you aren't interested in radiation, but you should at least know if it's a possibility and explore the pros & cons. 

It's common knowledge in the AN world that docs who only do surgery recommend surgery (like the surgeons @ House Ear Institute) and docs who only do radiation typically recommend radiation.  You need a doc who does both so you aren't getting a biased opinion.

I have an excellent neurotologist in Hinsdale, Illinois if you can't find a doc in your area who does both radiation and surgery.  If you're interested, just PM or email me.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Willbur

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Re: Very worried
« Reply #27 on: January 03, 2017, 08:24:44 am »
So I saw a doctor here who does translab surgery and said that at this point there is no way to preserve my hearing. Should I seek a second opinion or should I just move forward with it? Ive already opted out of radiation because he said it can make it worse. Lastly, he pointed out there are dark spots on it which indicates that the tumor is cut off from blood flow and it should be easier to remove. Any input would be helpful.

Hi, Willbur -

here's my take on your situation.  You need to see a doctor who does both radiation and surgery to get an opinion of what's best in your situation.  Most docs will radiate an AN up to 3 cms - so unless there is an issue with the location or some other reason I'm not thinking of here - radiation should be a possibility for you.  You may decide that you aren't interested in radiation, but you should at least know if it's a possibility and explore the pros & cons. 

It's common knowledge in the AN world that docs who only do surgery recommend surgery (like the surgeons @ House Ear Institute) and docs who only do radiation typically recommend radiation.  You need a doc who does both so you aren't getting a biased opinion.

I have an excellent neurotologist in Hinsdale, Illinois if you can't find a doc in your area who does both radiation and surgery.  If you're interested, just PM or email me.

Best,

Jan

I've got my MRI coming up on the 16th to see if it is growing, shrinking, or staying the same size. I'm hoping that with a combination of the immunotherapy and diet will help kill it.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

voron999

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Re: Very worried
« Reply #28 on: January 11, 2017, 05:43:39 pm »
I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up.

Hi there!
Where in Wisconsin, may I ask?
I myself in Madison, WI.
Thanks.

PS: This is my first post on this forum as I suspect I might have AN (most all the standard symptoms listed here).
I will start my own topic..

He is in Madison up at UW Hospital. They specialize primarily in retrosigmoid there. I never went because docs here mentioned that translab would be better approach.

Thanks for the reply.
Just today I had my MRI and was confirmed to have 3mmx4mm AN on my left side.
So joining the club here.
Jan 11, 2016: 4 x 3 mm nodule in the left ......consistent with an acoustic neuroma.

Willbur

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Re: Very worried
« Reply #29 on: January 13, 2017, 09:52:49 am »
Thanks for the reply.
Just today I had my MRI and was confirmed to have 3mmx4mm AN on my left side.
So joining the club here.
[/quote]

Welcome to the club. At least your AN is very small at this point. You've got many options including watch and wait. How old are you?
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth