37 YR Male, 6.3cm AN, 4 surrounding cysts - post surgery success story Chicago

[Walter-AN]

Awesome pics!! Keep strong and keep it going on the positive side you are in my prayers!

[ANGuy]

[Walter-AN]

Alright Norton!!

[Jet747]

Ok, I'm not posting this to scare anyone.  This is just my experience and I'm being honest about this whole adventure.

Radiation is NOT fun, but if I can get through it anyone can, I hate needles and I tend to faint at hospitals!

I had my RS in late May and took a conservative surgical approach.  Meaning some tumor remained and I knew I would have radiation follow-up.

I had my GK treatment 10/30/15 and on 11/1/15 my eyes swelled shut for 2 days.

The swelling isn't from the radiation per se, it is from the stuff they inject to numb the pain from the device they use to lock your head into position.

My experience was it took about 1 week to really recover from GK swelling.

Unfortunately, I do have some good tinnitus now but I'm hoping it subsides in a few months.  Also I can't stand music with a lot of treble as it bothers my left ear.

I'm finally feeling my energy levels return about 2 weeks after treatment.

I was glad I saw some pictures of GK swelling or I would have been quite shocked as it didn't really come on until 2 days after my GK treatment.

Anyways, I'm back to "mostly normal" now (2 weeks) and have my 6 month MRI scheduled in April.  Not sure I expect to see any reduction by then but I'm thinking positively.

Feel free to email me as I'm an open book about this whole experience, I love chatting.

Good luck to you and I wish you well on whatever path your on!!!



Day 2, horrible swelling mainly in my eye area.



Day 5 post treatment swelling down but not gone.



1.5 weeks, swelling basically gone!



Walking with my lovely daughter!  Simply the best!!!

[MG]

Thanks for sharing  your experience and photos. Wow, your eyes were really swollen! Glad all is back to normal. I think if I have to have radiation I will go with CK. I am allergic to everything and can not tolerate meds too well. Thanks again Jet747.

Best of luck,
MG

[DizzyMamaIL]

Were you allergic to the numbing stuff they use or is it common to have swelling like that after GK? I'm sorry if I sound like a noob, but I am. I'm still not fully decided on how to proceed and trying to gather as much info as I can.

[Jet747]

Update 9 months post surgery and 5 months post radiation.

The great news is this is all fading quickly from memory, I think having a 20 month old helps.

Post treatments, still a bit of tinnitus in my left ear but it isn't as bad as it was 2 months ago.  The scar continues to be healing quite well.  I will say the winter in Chicago is unfriendly from the perspective that the titanium plate in my head feels weird when it is cold and I forget to put a hat on.

Honestly, all in, I would say I'm feeling at least 300% better than I was a year ago.

I will post an update in May following my MRI in April.  I'm quite interested to see what this little guy looks like post treatment!

One of the many benefits which have come from this episode has been speaking with a number of people via this forum.  It's a great site and I'm happy to talk to anyone.  I'm becoming more and more convinced that your outcome is a combination of the skill of your Dr. and the positive attitude you carry in and out of treatment.

Good luck to you!

@Dizzy,

The swelling wasn't from an allergic reaction.  It is simply a function of the volume of liquid they inject at the bracket mounting points.  The liquid goes in but then gravity takes over and pulls the liquid down which is what caused the temporary swelling.  It lasted about 2 days.  Not such a bad effect.  Email if you have other questions.

[DizzyMamaIL]

Thanks!
It's great to hear your 300% better!

[Jet747]

Update - nearly 1 year post-op, 6 months post radiation (GK),

Just had my 1 year MRI follow-up appointment.

Everything went very well.

No change in tumor size which is great.

1 year beyond surgery I can report the following: 

Balance is back to normal, I bike with my daughter all the time.
No dizziness, no facial issues, no hearing loss on surgery side.  Remains at 95% which is the same as pre-surgery.
Slight tinnitus in left ear.
Sensitivity to high pitched sounds in left ear...going to an ENT next week to be fitted with an Etymotic device which reduces certain pitches of sounds.

All in I am extremely happy with how this ordeal is turning out.

I've enjoyed speaking with and e-mailing many of you over the course of the last year.  Please feel free to send me a message if you have any questions and I will be glad to respond.

I plan to send an update in another 6 months after my 18 month MRI & I'll let you know if the Etymotic device works out.

Best wishes to you all,
Jet


Current state of the surgically reduced and radiated tumor.



My awesome daughter who is growing up way too fast!



Daughter and wife going to her favorite place...the fire station near our house.



The family whom I love!!!

[Jet747]

Update August 13th 2016.

It's been about 15 months since the RS surgery and 10 months since my GK radiation.

I can report most everything is back to normal.

I will say the tinnitus didn't go away so I'm trying a product made by WidexUSA.  It is extremely small and discrete and I wear it in my surgery side ear.  Basically it plays random tones all day and somehow this makes your brain not "hear" the tinnitus.  It isn't annoying and you can hear conversations just fine.  I've had it for about a month and I would say it's definitely worth trying if tinnitus is bothering you.  They give you a 30 day money back guarantee so it might be worth a try.  It isn't a cure though.  Also, my insurance didn't cover it so it cost me $2,300 but I still would recommend it for people whose tinnitus bothers them.

One other item of interest is I had 6 shots of cortisone in my scar about a month ago to help reduce swelling.  Although I hate shots I would say I'm glad I did it and the scar inflammation definitely subsided (scar is obviously still noticeable though).  A dermatologist recommended it & I decided to give it a try since I have a bald head.  One nice benefit is the scar doesn't really itch anymore.

I have my next MRI sometime in November 2016 and will post an update then.

Hope your all doing well and if you have any questions feel free to PM me.

Best to you and your families!
Jet


Hearing Test Before surgery 5/19/2015 and hearing test 1 year later 6/7/16.  A slight improvement in my hearing occurred, rare but possible I guess.


The WidexUSA tinnitus aid.


Widex "in action"...lol


My 2 year old daughter and truly the best thing ever!!!

[ANGuy]

Glad you are continuing to do well, and continuing to report back.

Cortisone is great stuff, for lots of things.  My wife had a keloid scar on her lower back, about one inch in length, that was right where the waistband of her pants sit.  It was raw and painful.  Some cortisone injected into, one application, turned it into a "normal" scar within a week or so and it's been fine ever since.  The shots are painful I'm told, but very much worth it.  Repeat treatments might be needed, but not in her experience.

Fair skinned people can get keloids, though it is not as common, so maybe you had a bit of that going on with your scar.

[mcrue]

Update August 13th 2016.


I will say the tinnitus didn't go away so I'm trying a product made by WidexUSA.  It is extremely small and discrete and I wear it in my surgery side ear.  Basically it plays random tones all day and somehow this makes your brain not "hear" the tinnitus.  It isn't annoying and you can hear conversations just fine.  I've had it for about a month and I would say it's definitely worth trying if tinnitus is bothering you.  They give you a 30 day money back guarantee so it might be worth a try.  It isn't a cure though.  Also, my insurance didn't cover it so it cost me $2,300 but I still would recommend it for people whose tinnitus bothers them.

Wow! I PAID $3300 for the exact same from Michigan Ear Institute. I feel ripped off. I came in there all suicidal and would have paid anything ..and apparently did!

Anyways, the WIDEX hearing aid with Zen feature  has helped me cope with my tinnitus 75-80% which is life-saving in my opinion.

[Jet747]

18-month update.

It has already been 18 months since surgery and 12 months since radiation.

Here are the main highlights:

The remaining tumor has some apparent necrosis going on, which is excellent.
The remaining tumor is however slightly larger than it was six months ago -- this is considered "normal."  Physically I don't notice but mentally it bugs me.
Tinnitus is annoying; I'm doubtful it is going away.  When I remember to wear my Widex Zen thing, it helps, but I usually forget to wear it.
I have no hearing loss.
I have no balance issues.
My energy levels are at an all-time high.

All in I'm pleased with where I'm at.  The next MRI scheduled for one year which is when I plan to update this thread.

If I knew how to, I would change the title of this thread to "post surgery story"...it is definitely premature to call this a "success story" because I have about 40 years of life expectancy remaining.  Things that I would never have thought twice about before surgery now weigh a bit on my mind.  Headaches for example; before surgery I never thought twice about getting one.  Now I get one and there is just the slightest bit of suspicion that something is going wrong.  I guess this is par for the course for everyone regardless of the way they choose to treat their AN.

My daughter is just over 2 now and brings us the greatest joy I could ever imagine.  She is truly a gift from God and came at exactly the right time!!!

Good luck to you all, as always feel free to reach out with any questions/comments you may have.

Best,
Jet

[ANGuy]

I'm so glad to see you doing so well.  Tinnitus and headaches are things people who do not have AN's get too, so consider yourself normal and carry on enjoying your daughter. 

[Jet747]

carry on enjoying your daughter

Thanks and that is exactly the plan!  We try to live in & enjoy each moment as much as possible.

By the way, I didn't mean to imply I actually worry about headaches.  I may get a minor one every other month or so; really they are not more/less frequent than beforehand.   Just the mere fact that I think about them at all is annoying.

Good luck on your WW and I wish you the best!!!