Author Topic: Intro  (Read 1282 times)

gilly83

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Intro
« on: June 28, 2017, 09:53:07 am »
Hello Quick Intro,

Im 34 year old male from UK, just been daignosed with a 3cm AN. been having symptoms for about a year or so, (loss of hearing, ringing in ear, balance slighty off, tingling in face, used to have mild headaches, and sometimes what i would call a rush to the head (basically felt like my head was very fuzzy and couldnt really focus with either ears or eyes) thought the headaches and the head rushes have died down over last 6 months.

I first went to docs, who sent me away and told me to try hay fever tabets and chew chewing gum... i went back anout 3 months (jan 2017) later as the ringing became permainant, i was they referred to the ENT department, however i wasnt refered properley, and i had to phone 6 weeks later to find i wasnt even on list. I then got added (from the start). eventually i saw the ENT guy on 16th May (i also had a hearing test that day that showed my hearing was down on right side) he sent me for an mri scan 2 weeks later, and 2 weeks after that i received appointments for the ENT and a neuro surgeon (both on same day diffent hospitals, one at half 10 otehr at 12, which i managed to do). This freaked me out ( iwas expecting an AN but know i was thing all sorts and that it would be even worse.

I saw the ENT guy and he told me it was an AN, it was kinda a relief (i kinda thought it was that and at least its not life threating if not left stupidly wrong. He told me there was a possibilty of a gamma knife, but he'd booked me in to nerosurgeon to go through my options. So off i went to see him. He told me that at 3cm it was proably just on the bit too big side for the gamma knife and that suregery is most likely. But he has sent a letter off the sheffield hospital to see what they thing.

As it stands, i am know to have a contrast scan in a few weeks and go from there. I hvae a hol abroad for few days in July and then one at end of August for a week, he has said he will make sure it is between the 2, so we can then get a plan together for what happens next.

so i am assuming surgery sometime in septemer or october. I dont think it will be all cut out as it may be too close to the facial nerves. Bit may be left for gamma rays sometime in the future (as i believe).

so thats where i am at the moment, just diagonosed yesterday, releived it wasnt a worse case, but it's starting to sink in a bit now. I think i will be fine until just before the surgery, thats when i will start bricking it.



MarlaB

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Re: Intro
« Reply #1 on: June 28, 2017, 11:49:43 am »
Sorry to hear about your diagnosis, but I know there are good places for you to look for treatment all over the world, including the UK. ANA is great (did you see the "questions to ask your physician?", as is ANAC (canada) and BANA if you want to stay close to home. (https://www.bana-uk.com ...have you found that group yet??

wherever you go, you will not be alone.

Best of luck, and keep asking questions!!

gilly83

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Re: Intro
« Reply #2 on: June 28, 2017, 12:53:39 pm »
Thank you, its through NHS in uk so got a guy sorted seems to know what he is on about. I'll check out the questions to ask and the whole forum. Thank you

ANSydney

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Re: Intro
« Reply #3 on: June 28, 2017, 05:34:47 pm »
Hi gilly, welcome to the club that nobody want to be  member of, but everyone is friendly. If you do go to surgery, make sure your neurosurgeon has done at least 100 AN surgeries. There are many papers that demonstrate that for the first 50, neurosurgeons are learning and have much worse outcomes than the next 50. It takes at least 100 to start getting proficient. After that proficiency gets better.

This may surprise you, but at 3.0 cm, all three options are available to you:
1) Surgery (either translabyrinthine or retrosigmoid)
2) Radiosurgery (either fractionated or gamma knife) ( http://bmjopen.bmj.com/content/bmjopen/3/2/e001345.full.pdf )
3) Observation ( https://www.ncbi.nlm.nih.gov/pubmed/25120176 )

Some gamma knife units may be reluctant to treat a 3.0 cm tumor, but there are papers showing gamma knife treatment up to 4.0 cm. Those that do fractionated radiosurgery are more likely to treat. Are you near Birmingham? I have a high regard to the hospital associated with the university there.

gilly83

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Re: Intro
« Reply #4 on: June 29, 2017, 01:15:48 am »
hi, thank you for your repy and info, i will ask him the questions of how many he's done etc.

interesting about the gamma knife up to 4cm, The surgeon has sent a letter off to sheffield where they specialise in the gamma kife for their opionion. They may come back and say they are comfortable doing it.

thank you again

just as a side, has anyone ever had any symtoms that feld life they have a chest infection with it? My chest aches a bit know and again, and it feels like i have what is like a start of a cough, but in never gets into a full cough just tickely throaght that neve really changes, been like that a coupole of months. I also i am quite gassy over last few days/week, that feeling of a burp co,ing up but just to the chest/throught area.

may be something completely different, just wanted to see if there was any record of anyone else ever having this.

cheers

Patti

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Re: Intro
« Reply #5 on: July 01, 2017, 09:20:56 am »
all i know about that is my tumor affected my throat.  i forget what nerve that is.  to this day i still have no feeling on that side of my throat and choke easily.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

 


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