Author Topic: 29 years old with 2.6cm AN  (Read 4344 times)

seh0308

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29 years old with 2.6cm AN
« on: December 12, 2014, 06:36:14 pm »
Hi Everyone,
I was so grateful to find this website!  I was just diagnosed two days ago with a 2.6cm AN.  I am 29 years old and live in the Philly, PA area.  I am fairly terrified right now and go through serious ups and downs of "I am going to be totally fine" to "I have a brain tumor and am freaking out".  I have already seen an ENT surgeon from UPENN who has told me that due to the size and position of my AN that surgery is most likely my only option.  It has already began to impact my facial muscles (tingling and goes numb sometimes) and then I have lost some hearing and have ringing in the ears.  He told me that it would be the best option to just take it out. 
I have another appointment Monday with the neurosurgeon he works with, and the hope was to have surgery sooner rather than later.  However, he has told me the likelihood of preserving my hearing is not good.  I can still somewhat hear now- however I guess from the size of my tumor this is why he said this?
He also said that with age, the research of gamma knife therapy doesn't go as far as my life hopefully will- and that if it turned malignant there would be no cure for that.  Which scared me so much that I almost immediately wrote that option off.  He seems very knowledgeable and helpful, but I am always open to hearing other opinions. 

I was hoping to just get some input on others in the area and if anyone has experience with UPENN or other hospitals I would be very interested to hear about it. 
I feel fairly scared at this moment so any other ideas or ways to get through this I would greatly appreciate. 
Thanks in advance. 
2.6cm AN diagnosed 12/11/2014
decreased hearing, some facial tingling, and tinnitus

ANGuy

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Re: 29 years old with 2.6cm AN
« Reply #1 on: December 13, 2014, 11:20:09 am »
The fear will subside over the near future. You will get used to the idea of having an AN.  In a couple of weeks it wil be easier to deal with than it is now.  I was diagnosed a few months ago and while it might be false bravado, I no longer "fear" it.  If I get surgery, I'll probably be crapping my pants on the way to the hospital, but for now, I'm all like "AN schmay-n, I aint all askeered this".

As for treatment options, I think you should get several opinions as it will also allow you to get a feel for the Drs. themselves.  The Dr I am dealing with now gave the same opinion as the first one I saw, but I didn't have any confidence in the first one.

As for my opinion of your treatment options, it's not worth much.  Mine is about half the size of yours and I am much older so for now, I am watching and waiting.  However, in your situation, I think your UPenn Drs are probably correct.  Keep in mind, if you do need surgery, you don't have to have it next week.  You can pick a time, within reason, that is best for you.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

seh0308

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Re: 29 years old with 2.6cm AN
« Reply #2 on: December 13, 2014, 02:26:01 pm »
Thank you so much ANGuy!  I feel pretty confident with my choice of hospital and surgeons so far, but I guess more will tell when I see the neurosurgeon on Monday.  I feel like I just want to get this taken care of so that I can start recovery and move on. 
It has been great to read all of the success stories, since you read so many horror stories when you just google AN.  Thank you again for your response, I greatly appreciate it!
2.6cm AN diagnosed 12/11/2014
decreased hearing, some facial tingling, and tinnitus

MNTim

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Re: 29 years old with 2.6cm AN
« Reply #3 on: December 13, 2014, 03:42:29 pm »
It is scary and there are a lot of thoughts racing through your head-brain surgery! I bet you never thought you would have that type of surgery.  It is amazing that brain surgery is fairly routine now because of the specialists that perform it. That being said make sure you are working with a team that has done several of these surgeries.
I am four years from my last procedure.( My tumor was over 5 cm and causing a lot of issues so I didn't follow the normal path.) In a typical day I don't think about the effects (single sided deaf, facial weakness, balance issues) Amazingly our bodies adapt!  You will be a different person.

Best of luck and use this forum.

Tim
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

Ugne3030

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Re: 29 years old with 2.6cm AN
« Reply #4 on: December 13, 2014, 10:28:15 pm »
I am 50 years old and diagnosed in feb this year with a 2.5 cm AN. My tumour has grown 1 mm in the past 9 months. Was very much going to have gamma knife but have now decided to remove it. Surgery is set for Jan 16th. My interaction with the radiation doctor was not positive. I cant see me putting my life in their hands. I asked about the standard deviation and stats for a cancerous tumour occuring and he was all over the map. That was toronto western.

 The neurosurgeon in London is fantastic, and as he said, surgery is the tried, tested and true method of dealing with AN. Iam crapping my pants. Please pray for me.


LakeErie

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Re: 29 years old with 2.6cm AN
« Reply #5 on: December 15, 2014, 07:47:12 pm »
Seh -how close are you to Pittsburgh? UPMC is a well known gamma knife treatment center ( Dr L Dade Lundsford ) and also is known for their neurosurgical department. A second opinion from a treatment center with a long history of treating AN's could not hurt. You never know what you may learn in another appointment or two that may influence your ultimate decisions. 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

ewhitese

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Re: 29 years old with 2.6cm AN
« Reply #6 on: December 15, 2014, 08:47:37 pm »
UPMC is the pioneer in the field of AN treatment surgical and radiotherapy.  I realize that being close to home is a consideration in your decision process, especially when you consider follow up care after surgery.  Some of the doctors trained at upmc have moved on to other hospitals.  New York City has a hospital with one of them, not sure which one,  but New York City maybe closer and as good an option as UPMC Pittsburgh.  I agree that a second opinion is important, don't rush into anything without being comfortable with your choice.  This site has some information on hospitals that are well known for AN treatment I would begin by looking at them.

I personally have not seen any evidence that associates an increased risk of cancer from Gamma Knife, but I am not sure how effective it would be on a tumor the size of yours.  These are both good questions to research and find knowledgeable opinions of.

I am no expert and am in no way able to say what is your best solution.  I do know that you will be the person expected to make the decision so weigh all your options, each treatment approach will have positive and negatives.  You will find the one that suits your needs.

The diagnosis you have been handed is scary as all get out, but you will get through this.  I would like to say it won't be a struggle but that wouldn't be the truth.  You will have a lot of work to do to get to the other side but you will get there.  Keep posting, keep asking questions, we are all here because we were helped through the process you are in by caring individuals who have been where you are.  We each have something special we have learned in this process we want to share with those who ask.  Take a deep breath keep a record of what you find out and do a positive negative chart for each option you research.  You are in our thoughts and prayers.

Ed

seh0308

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Re: 29 years old with 2.6cm AN
« Reply #7 on: December 16, 2014, 03:19:50 pm »
Thank you everyone so much!  I decided that I just haven't gotten that "feeling" from my doctor.  I put a call into him to talk again, and also reached out to a bunch of other facilities like Johns Hopkins, House, USC, and Columbia.  I want to be sure I am making the best decision possible. 
The other part of me just wants to get this over with!  I know that not one doctor can guarantee anything (like no facial paralysis) but I want someone who feels confident that we can avoid that.  Maybe I am being too picky since I dont think any surgeon in their right mind would say something that wasnt 100% a fact. 
2.6cm AN diagnosed 12/11/2014
decreased hearing, some facial tingling, and tinnitus

G8trdude

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Re: 29 years old with 2.6cm AN
« Reply #8 on: December 17, 2014, 11:13:15 am »
I completely understand your stress...

I’m a 48 y.o. male living near Philly.  I had a 2.3 cm AN (snuggled up against my brainstem) diagnosed in June 2014.  I had almost no hearing loss in my AN ear.  I had faint tinnitus in the AN ear, very slight balance issues, some faint facial numbness on the AN side of my mouth.  I would not have acted on my symptoms, but luckily, my AN was an incidental finding in a CAT scan and then confirmed by contrasted MRI.

After a bit of freaking out (actually quite a bit, straightened out by my wife who dealt with the diagnosis better than I), we met and consulted with Penn (Bigelow/Lee - strongly recommended retrosig), Jefferson (Wilcox/Evans/Andrews - willing to watch and wait, surgery (recommended retrosig), or radio (Andrews speciality)) and Hopkins (Francis/Tamargo - strong retrosig recommendation).  I also had phone consults with House (Wilkinson/Schwarz - recommended surgery, and translab over retrosig).

It then took me a month to make my decision - translab surgery at House/St Vincents.  A difficult decision, due to the conflicting recommendations of the experts, and mostly anecdotal info about the outcomes of my options.  I chose House over some great local/east-coast options, because as far as _I_ could establish, they had more extensive and current AN surgery experience.  And almost more importantly… my “gut feeling”, following all of the surgeon consults, had me favoring House.

I'm now 11 weeks out from surgery and doing awesome!  My AN was completely removed, I had no complications, and I was back about most all activities 4 weeks post surgery.  E.g., driving, back to work, daily exercise, etc.  My thanks, and great result in my opinion, go to my fantastic House surgeons, Dr.s Slattery and Schwarz, as well as Dr Stephan and the St Vincents staff.

I hope that your continued research and consults with experienced treatment teams soon pays off for you, with a decision that YOU control and are at peace with, and ultimately results in your AN experience being another small bump in the road of life.  Take care!
Diagnosed: June 2014 MRI, 2.3 cm AN right side
Symptoms: faint tinnitus, minimal hearing loss, slight balance issues, faint lip numbness
Status:Oct 2 2014 translab by Slattery & Schwarz at House = SSD. NO facial problems. NO pain/headaches.  Minimal balance issues.  Back to life!

Susang8

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Re: 29 years old with 2.6cm AN
« Reply #9 on: December 18, 2014, 07:57:27 pm »
seh0308...and also to a fellow Canadian Ugne3030....

I am 58, am Canadian living in the Toronto area, and was diagnosed with a 2.8cmx2.6cm AN in May 2014.  The AN was pressing on my brain stem and cerebellum so due to size and location, after much research, I believed that my best treatment option was surgery.  I too had a questionable consultation with a GK radiation specialist at Toronto Western.

After consultations with 3 different Neurosurgeons I chose the team of Dr Rutka (Otolaryngologist) and Dr Tymianski (Neurosurgeon) because of their many years of experience in operating on ANs and I felt very comfortable and confident with them.

I had my Translab surgery at Toronto Western on October 27 and I am happy to say that it was an unqualified success.  The surgery was 9 hours long, they were able to remove the entire tumour, and aside from the expected SSD, I have had no other negative impacts from the surgery - no balance or dizziness, no pain, no headaches, no eye or facial paralysis...

I was able to go home on day 3 post-op.  I was driving 1 week post-op and was back to all of my pre-op activities by 3 weeks post-op. 

I am now 6 weeks post-op and most of the time I don't think about the fact that I had brain surgery 6 weeks ago.  And I know that there are many others who have had equally successful outcomes.

Do your research, choose your Drs carefully, stay positive...you will get through this...



Diagnosed with 2.8cm AN May 15, 2014
TransLab surgery completed October 27, 2014
No eye or facial problems, balance good, no dizziness
SDD and some tinnitus
Tumour completely removed
Life is VERY good!

seh0308

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Re: 29 years old with 2.6cm AN
« Reply #10 on: December 19, 2014, 10:58:34 am »
Thank you all so much, this has been incredibly helpful.  I think I have decided to go with Dr. Luxford and Dr. Schwartz at the House clinic and my surgery will be Jan 8, 2015.  Never racking, but I am so happy to have it on the calender. 
2.6cm AN diagnosed 12/11/2014
decreased hearing, some facial tingling, and tinnitus

 


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