Author Topic: Any regrets?  (Read 12787 times)

mojwri54

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Re: Any regrets?
« Reply #15 on: May 12, 2012, 03:38:29 pm »
Only regret I really have is not being found sooner.  My was very large and also growing into the brain stem. It was so large so got most of it out then I had cyberknife radiation.   My regular doctor I had for years and trusted (or did then) when I went to him when my tongue on right side was numb said vitamin def and gave me vitamins.  Then my right check felt novacaine all the time, yes I was losing my hearing slowly but that part ran in my family so I never thought the two connected. The doctor at that time as much as said it was all in my head (yes it was but not the way he was impling).  I then was thinking it was maybe a dental problem went to denist he said it as not but more to do with nerves or something and wrote a note to the doctor to do an MRI that is when the large tumor was found.  Yes, I went to the ENT in the years this was going on and  all he was interested in was doing hearing teste every couple of weeks and putting me on steriods.  I owe my life to the denist or who knows what would had happened. I am am glad to be alive.  I been going through AN almost 4 years since I have known I had it.  Yes I lost all my right hearing, lost sight on that side also, my right side is partly paralyze.  It is some better at least my swallowing is a lot better, I was on baby food and puree for 9 months.  My balance is bad walk like I am drunk alot of time especially when I am tired.  I will be 58, 20 May and proud I have made it to my later 50s.

geexploitation

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Re: Any regrets?
« Reply #16 on: May 16, 2012, 10:10:38 pm »
Up All Night, I thought I'd comment as a lone (so far) voice of someone who hasn't had surgery... yet. I have recently struggled with the same stuff you have. I have a 4 cm probable AN in the CPA. I found out about it in January. I'm pretty much asymptomatic (fullness in one ear, normal hearing and everything else), and like you I've often wondered if I could wait a bit longer, keep my hearing a bit longer, etc. I'm 34, so the age thing was a factor in that, too -- "I'm too young to lose half my hearing," that kind of thing. And perhaps like you, I have an instinctual disinclination to get surgery. I've never been hospitalized and brain surgery seems like a helluva way to break that particular streak.

I took some time after diagnosis to take care of some other stuff (important work milestone) before turning back to my tumor. Since then, I've thought a lot about this and done a lot of research. I've decided to get the surgery now. There are a few reasons for this. Most significantly, the medical literature is clear on the fact that functions lost are more likely to stay lost or get worse after AN surgery. So even though my facial function is fine, I would be decreasing my chances of having full function after the surgery if I waited for that function to degrade before going under the knife.

Other complications can arise, too -- hydrocephalus, brain stem compression accompanied by increased difficulty of surgically separating the tumor from the brainstem, and other things people in this thread have alluded to. There's also the non-zero (yes, very, very small but still there!) chance of rapid tumor growth in certain situations, and these tumors aren't too accessible on an emergency basis.

So all in all, I completely understand your reticence for getting surgery. I would say there are some very good reasons to get it, though.

Good luck in figuring this all out.
=========================
41 mm x 24 mm x 28 mm probable AN diagnosed 1/10/2012.
Surgically diagnosed 7/9/2012 as TRIGEMINAL schwannoma and removed via retrosigmoid at MGH in Boston, MA by Drs. Barker and McKenna.

Cindyswart

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Re: Any regrets?
« Reply #17 on: May 17, 2012, 03:14:54 pm »
My only regret was not forcing my doctors to move more quickly. I too had right side(tumor side) facial paralysis, 50% hearing loss, taste issues, etc.  I was diagnosed April 2011, by Aug 11 the tumor has grown to three times normal size. While this seems not to be the norm, I was more than happy to have that sucka out!! Surgery was Aug 23, 2011 and I have my life back, face is back at 98%, hearing, total deafness on that side, taste is 85% back. And I am here and back to my normal schedule, working 10 hours a day- I love my job!!! You have to take your own path in this, but my AN have a path of rampant growth and he needed to head on down the road! + I love my surgeon!! I am blessed!
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

Kathleen_Mc

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Re: Any regrets?
« Reply #18 on: May 19, 2012, 01:25:58 am »
(ICU nurse >20yrs-WORST PATIENT EVER!) ......... already advanced to my brain stem and there was a slight shift.....seen two neurosurgeons who recommend surgery-the 1st recommends within 2 mths, the 2nd within 4 mths.....[/quote]


UP-all-night: Nurse to nurse here...... respect...you have to right to make these decisions for yourself and I'm sure you have done your research however.....what exactly are you waiting for? Sure you might end up ssd/balance problem/etc etc but if this sucker takes a fast growth spurt towards the brain stem you'll end up in a compromised state going into surgery, or if you don't feel it coming die in your sleep or something. There are incidents of rapid growth in AN's for unknown causes, they do not always follow "the rule" of being slow growing tumors. We both know there are far worse things to live with than the possiblities of AN surgery.
When my tumor was finally found it also was close to the stem and it was "hurry up and get on the table before you're dead" (and that was the doctor's opinion), I was told without surgery I would be dead from stem compression in a few months.n Yes death can occur!
Please rethink you decision to put off treatment.
Kathleen
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)

PaulW

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Re: Any regrets?
« Reply #19 on: May 19, 2012, 07:41:14 am »
Story here of a person in Australia with an 8cm AN
The bigger they are the harder they are to get out.
This guy didn't know he had a problem despite the size.

http://www.youtube.com/watch?v=LM4Z78x_O80
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

alabamajane

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Re: Any regrets?
« Reply #20 on: May 19, 2012, 09:58:03 am »
AMAZING story,, never heard of one so large! But just goes to show how dangerous these tumors can be and how grateful most of us should be... reinforces the need to find out the location of your tumor and listen to Drs. opinions and reasons for proceeding with treatments... mine was compressing brain stem after three yrs of w&w and was only 2.8 cm at time of surgery. But I knew it was causing increased symptoms by about the second yr of w&w.. denial is so much a part of most of our journeys in the beginning and something I wish now that I had "gotten over" much sooner!! Thanks for link,, I hope many more watch it... Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

leapyrtwins

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Re: Any regrets?
« Reply #21 on: May 19, 2012, 07:57:27 pm »
Story here of a person in Australia with an 8cm AN
The bigger they are the harder they are to get out.
This guy didn't know he had a problem despite the size.


A member of this Forum (Jon aka Satman) also had an 8 cm AN and didn't realize he had a problem.

If you search the Forum, you'll find his posts.

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

Mei Mei

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Re: Any regrets?
« Reply #22 on: March 10, 2013, 09:29:00 pm »
 >:(   Many regrets that I listened to Dr. Niparko at Hopkins.   He told me that I would have a stroke if I didn't operate very soon.   The soonest they could get me in was two  months.   In that time I didn't know enough not to listen to him as it all sounded very serious.   All the other doctors: Cornell, Maryland and HEI didn't say this and said to do Middle Fossa.
Now I am suffering the consequences of daily packing myself on ice for 8 hours a day from 4 pm onwards.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

It is what it is

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Re: Any regrets?
« Reply #23 on: March 18, 2013, 07:32:20 pm »
No regrets.  The sooner treated the less potential increase in symptoms.  I wish good things for you.

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.

 


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