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41
'another good read, thanks
42
Post-Treatment / 15 years already?? WOW!
« Last post by jaylogs on April 10, 2025, 06:55:20 am »
Greetings all, it has been a minute since I have initiated a post on here. I do check out posts from time to time but alas, with my new job title I've taken on I have gotten quite busy over the years. But I digress... so yeah, 15 years. It was actually 15 years here this last December 9th!  For all those who are just now starting this wonderful journey, as you read all the various posts and weed through all the advice from the many wonderful and helpful members on this forum, one theme does stand out: Life after post treatment IS a new normal. There's no two ways about it. The level on which that new normal is varies greatly depending on your treatment, age, physical condition and a dozen other factors. But, personally I think life does adapt to whatever gets thrown your way. Cancer survivors know this, and all the other nasty lists of diseases and afflictions one can get. 

So, 15 years later, how do I feel and how am I doing? I am now 60 years old. I work out at the gym 4 to 5 days a week. My balance is pretty much back to normal, although once in a while it does sneak up on me and I find myself stumbling off to one side or another. But nothing major.  I came out of my middle fossa surgery with partial hearing loss. That has not diminished, and I have augmented it with BAHA so that helps. The tinnitus is the one and only thing that reminds me of what I have gone through. It comes and goes, right now as I write this it is fairly screaming at me, but there are other times I barely notice. So overall, that is manageable.  I am in excellent health for the most part but I can say that whatever issues I have had I can attribute to my AN journey, ie: Migraine management.  I am not sure if this was related to post AN, but a few years ago I had some sort of seizure, where I was in a restaurant eating and I just stopped and basically checked out. Catatonic. I didn't snap out of it for several hours. They called it some sort of disassociative type seizure. I have had only that one episode but I am on meds for that for the rest of my life.  I mentioned migraines, I was getting fairly bad ones so went to a neurologist and finally got that managed, no more migraines, thank goodness. 

So all in all, those were really my worse issues post AN. I don't feel compromised now in anyway, I am now in an engineering position at work so that definity has not been affected.  There is hope, light at the end of the tunnel! Continue to ask the questions, get advice. Lean on family, get the help you need. You do NOT need to be alone in the journey. I would have definitely have been for the worse if I hadn't found this wonderful forum and all the people who helped me at the time.  If you have read all the way to end, thank you.  If you are still in the early stages of AN, good luck to you. As we always said on here, whatever decision you eventually make on how to treat it, it WILL be the right one! :) If you are just post treatment, have patience.
Take care!
Jay
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An interesting read also re metabolic factors even alcohol


https://link.springer.com/article/10.1007/s12672-024-01644-3
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AN Issues / Re: New member, symptoms questions.
« Last post by Mark F. on April 08, 2025, 07:40:43 pm »
Ok.  Surgery date set.  May 13th.  For anyone who who hasn't been through this yet, there are also two other appointments before surgery.  One for Pre-op physical and blood work.   The second is for another MRI that has to be done on the day before surgery. 
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AN Issues / Re: New member, symptoms questions.
« Last post by DanFouratt on April 07, 2025, 05:47:18 am »
We can and have shared cardio stories, I am not 1 year post OHS and got a great report from my Doctor.  Free to self monitor for the next 9 months instead of 6!  Take care and I hope it is cooling off!
46
Physicians / Re: Birmingham vs Houston vs Nashville
« Last post by notaclone13 on April 06, 2025, 08:00:52 pm »
Vanderbilt is a great choice. It has had a Skull-based surgery Center for many years.  UAB specializes in glioblastomas, but is not as good as Vanderbilt for skull-based benign tumors like ANAs. Have you considered Dr. Friedman in San Diego? If you can afford going to CA, it’s well worth the trip.
47
AN Issues / Re: New member, symptoms questions.
« Last post by mwatto on April 05, 2025, 07:39:44 pm »
Thanks so much Dan! It means I can focus on other things (cardio as my Lp(a) levels are high).
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AN Issues / Re: New member, symptoms questions.
« Last post by DanFouratt on April 05, 2025, 05:01:18 am »
Great update and news. Good luck

Dan
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Post-Treatment / Re: 6 year MRI update after CK
« Last post by DanFouratt on April 05, 2025, 04:58:08 am »
Congrats on 6 years!  I hope all is going well for you. 

JmLgrace like mwatto I no longer use contrast for monitoring.  I asked my doctor and he readily agreed.  His advice was make sure they do not give it to you when you are there.
50
Caregivers / Re: Patient is being difficult before surgery
« Last post by MarlaB on April 03, 2025, 10:57:00 pm »
Hi Jackie,
I had a long talk with my husband about this..he was my caregiver and I was the patient. As luck would have it, we were in therapy at the time of my diagnosis, I cannot recommend getting professional help more. The diagnosis of a life-threatening/life-altering condition is not easy.

And we are also here to listen and understand you BOTH!

Wishing you the very best.

Marla B.
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