Another AN case

[Willbur]

Well, finally made to the ENT specialist.
Short resume:
* I have a way to go yet before being too concerned (under 10mm is fine to wait-and-see he said)
* will check back in 6 months to see the rate of growth (the rate of growth - that is what to be concerned with)
* he up front discouraged me from doing radiation (GK) as at this point the potential side-affect on the hearing could out weight any gain for me (elimination of that annoying tinnitus in my case would be nice, but....);
* spoke about the permanent scarring caused by GK in the AN and I may want to wait just yet since there is no way back once that is done
* surgery - he could do it if I insisted; but he discouraged to be rushed
* regarding the tinnitus, echos, head discomfort he wants to consult another ENT specialist who works with such cases, but without invasive ways

In short, wait-and-see for me. At 48 I am young and healthy.
If can tolerate the symptoms, maybe should try to mitigate them for now and take the gradual path.
All for now.

Good choice.

[voron999]

I have a sauna room (proudly - self-made) and enjoy using it during the cold season.
I was told recently that sauna is bad for my AN (coming from some more general idea that heat is bad for tumorous growths).

Can anyone comment?
Any reliable discussions about this anywhere?
I did google and nothing useful so far came up.
Nothing on this forum either that I can find.

Thanks in advance!

[Willbur]

I have a sauna room (proudly - self-made) and enjoy using it during the cold season.
I was told recently that sauna is bad for my AN (coming from some more general idea that heat is bad for tumorous growths).

Can anyone comment?
Any reliable discussions about this anywhere?
I did google and nothing useful so far came up.
Nothing on this forum either that I can find.

Thanks in advance!

I workout quite a bit. I always use the sauna regardless. Can't comment on growth.

[jim j]

Hello Everyone I hope everyone is getting better. I have a question? I had my 1 year post Gamma Knife meet with my Dr. I had a MRI of Brain and MRI of cervical spine has the Dr thinks i have lost a lot of strength on my left side unrelated to the second acoustic neuroma. I also have a feeling of pressure in my head and at times I told him the headaches are so bad on the side of my surgery and Gamma Knife surgery I get nausea debilitated. He stated its not related. I know I need surgery of my spine has I had L4-L5 fused in 1999 and my cervical spine is been bothering me. But when they did the cervical spine MRI they noted a "chronic ischemic lesion in the right cerebellar tonsil. Please correlate with dedicated brain MRI scheduled for the same day."
.He never mentioned it to me. I called and send 3 letters asking him to advice me as it is part of the brain and should have been picked up he is a neurosurgeon. But I was told I needed to see his partner another neurosurgeon that deals with that he does Gamma knife. He told me to get to him ASAP and I am a little taken back has a neurosurgeon my neurosurgeon I believe he could have given me a little time to explain it. All I was told my Tumor and Cyst are stable and not growing but i need to get to the other Dr. I look it up and it is on the bottom of the cerebellum and it can be caused by a few different things. I have had 3 MRI done before on my C-spine and that was never mentioned yet after Gamma Knife that is mentioned and also this “There are hazy confluent areas and scattered punctate foci of increased FLAIR signal in the white matter bilaterally, nonspecific, but likely related to mild microvascular disease.”  again never there before? so why not tell me that all I was told 2 weeks later it could be just from getting older. I am 58 and had to many MRI of the brain to mention and never had these spots. Has anyone ever had this or heard of this?

[ANSydney]

jim j, I see you've had a rough ride since 2003 when you had surgery for a 5 x 2 cm (or was it 2.5 x 4 x 7 cm) tumor followed by gamma knife February 2016 for a 0.7 x 1.3 cm tumor. Now it looks like you have a 5 cm cyst. From what I can gather, the current MRI report is confusing. Perhaps a meeting with a neurologist to go over your history and to explain what is going on would be good - no discussion on treatment yet, just understanding what is going on. He may in turn refer you to others that can help to understand where you are at.

Sorry that none of this helps, but clearly recording your history on paper and getting the latest status may help you move forward.

[ColleenS]

Although we all wish we were not in this club, your W&W status is good. That gives you time to explore all the options if there is a time that you have to decide. Enjoy your summer 

[Crazycat]

48 years-old? That's how old I was when I was diagnosed and treated! And I'd been suffering from it for close to 5 years before.

[jim j]

Thank you AnSydney, I agree and I have already sent all my reports to a Neurosurgeon specializing in the Brain not just tumors. She is at Yale New haven and a Top Doc. I am waiting to hear back as to guidance and what I should do next. She did get on the phone after I faxed over all my tests from 2003 and her concern was the chronic ischemic lesion to the right of midline within the cerebellar tonsil. She stated no surgery no anything until we figure out what that is has it is in a very dangerous area and if disrupted can cause serious issues. So I am waiting for her to direct me to a Dr that can guide me through this now what I call a maze of issues. Thanks For answering Jim

[voron999]

OK, back from my 6 month check - no growth.

The ENT specialist feels I had this tumor for long time in this present state and this is how I lost some of my hearing on the left side (due to the growth).
Unsure, but fine. The hearing is about the same.

My tinnitus became more pronounced and more general (not just one side now).
But I can live with this and the "no growth" is good news.

Next check in 12 months now.
Moving on.

[ANSydney]

Congratulations voron. No growth since diagnosis 8 months ago. Hope you're travelling well.

[voron999]

Wanted to mention - I have been taking a daily baby aspirin pill close to a year now.

I started this when I found a mention of a baby aspirin pill on this very forum as a possible way to slow tumor growth.
I don't know if it does anything, but I don't think it hurts.

Besides, my bosse's Grandma has been taking a daily baby aspirin pill for long time.
This is the only pill she is taking.
She is turning 102 soon, if I recall.
What is good for 100-year old Grandma can not really hurt a 50-year guy. 

[mac84]

I've been taking 2 80mg aspirin each day since 2014.....no growth on mine. I'm going to keep doing it!

[ANSydney]

I've had no growth for 12 months since diagnosis and I'm taking daily 75 mg aspirin (regular tablet broken into a quarter). All very anecdotal, but there's really no downside. I may even live to 102!

[JLR]

I watch and wait from 2000-2010. The small AN was growing but it was still small enough to do CK which I did. That gave me 6 years then it started to grow.  Was leaning on the trigeminal nerve as well as the brain stem.  No additional radiation as I would have the probable chance of severe swelling and then major problems within my brain. My choices were limited to only who is the best surgeon within the best hospital who has the best neurosurgical floor and staff.  I saw 3 surgeons. Each one said I should have had surgery when it was still small.  I had the surgery on a radiated tumor and with that a host of complications. Although my walking my balance is better. My right side of face is swollen. My mouth droops, hard to put makeup on, I'm totally deaf in my right ear, I still have that very annoying tinnitus although that comes from brain.  I have that wobble head back its all not perfect. Should I have had the surgery in 2010. Would I have retained my hearing, would my face be symmetrical. Could a would a should a.  Stay well friends,  joan.