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For those in the 'watch and wait' status / Re: Looking forAN care in Baltimore Area
« Last post by Mark F. on Today at 05:20:43 AM »
I couldn't be happier with my experience at John's Hopkins in Baltimore.   But I didn't do the radiation.  I had the surgery six months ago on May 13th.   My neurosurgeon was Dr. Xu.  And he was assisted by Dr. Chen.   Honestly I was always wanting the surgery instead of the radiation and never once felt like anyone there tried to change my mind and go a different route.  Now I had a second opinion appointment early on in my journey at Hershey Medical center, and the entire time all they did was push for me to do the radiation.  I am located about halfway between these two well known and reputable places and it was the fact that Hopkins listened to me instead of trying to push me in a different direction that made my decision to go with Hopkins easier.  For background information, I am 56, and have always been active and in good health, which I think contributed greatly to a very short recovery time.  Just this past Thursday I participated in our local Turkey Trot 5k and had my fastest time since 2018, and that was just 6 months after major surgery.  I can honestly say I feel better than I have in years. 
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For those in the 'watch and wait' status / Looking forAN care in Baltimore Area
« Last post by And147159 on December 01, 2025, 10:55:56 AM »
I was diagnosed with a small AN (6x8x5)mm in March 2024, and I am still on "wait-and-watch". However, I found out on my last MRI on 10/25 that it is growing (7 x 12 x 5)mm. I am looking for care in the Baltimore area for treatment in case I decide. I am leaning toward radiation. Please let me know if anyone has used the service at Johns Hopkins or any other center in the Baltimore area. I would appreciate if you could share your experience and the physician's name too.

Thanks

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Post-Treatment / Re: Air Travel - preasure?
« Last post by mwatto on November 27, 2025, 07:02:49 PM »
I put half an aspirin in my water bottle. Or I take 1 mg valium.  I stay well hydrated and use a sleep mask if long haul. I have also used noise reduction earplugs in the past.
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Post-Treatment / Re: Air Travel - preasure?
« Last post by stevehernes on November 27, 2025, 02:44:25 PM »
The most important step is talking to your doctor about medication timing, walking limits, and any emergency contacts you might need. I always keep a small folder with prescriptions and medical notes just in case. In the middle of prepping I skim travmodo.com because it helps me look at general travel logistics, like airport tips or quieter destinations. Bringing noise-canceling headphones or comfort items can make long days much easier. Don’t hesitate to rest when your body tells you to. With the right planning, you can still have a great travel experience without feeling overwhelmed.
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Radiation / Radiosurgery / Re: My AN Story 2015 Sydney to Stanford CK
« Last post by SP on November 25, 2025, 05:42:49 PM »
So glad you are feeling positive & had good outcomes from your CK treatment !
Happy health,

Stella
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Radiation / Radiosurgery / Re: My AN Story 2015 Sydney to Stanford CK
« Last post by Maystro on November 25, 2025, 11:42:51 AM »
Since last posting on this forum I have had treatment.
Which was in April 2025. Cyberknife in Munchen.

Around treament my Tumor was 24 by 15mm
Cyberknife session was 30 min. With a facemark. Which looks to me like a far more comfortable solution than those screwing frames.

Just had my 6 months scan and appointment with my neurologist in Munich.
And so far Necrosis is visible on the MRI and the tumor has shrunk about 10 to 15% in size.
Which is according to the neurologist a strong response to treatment and positive results.
I couldn't agree more. No real strong side effects so far.
First few months a bit of a pulsating feeling in my head around the area where the tumor is.
But no issues with gait or other things.

Balance was not bad before treatment but has improved.
Neck flexibility has improved. (wasn´t aware of how much that actually was impacted before)
hearing before treatment was impacted. High en some lower frequencies were impacted. word recognition was not as good as it should be.
After treatment: last month there has been improvement. Where some lower frequencies came back. And word recognition has gone up.

All in all. I am happy I did my own research and didn´t trust the first neurologist I talked to.
I would say the advice I got was for the majority pointing towards surgery and at least debulking of tumor.
But reading the research papers told me a different story. Where it is also very important to understand the volume of the tumor and not base advice on just the diameter.
The neurologist in Munich understood I was well informed and read many papers. He was the first to have a full open conversation on what are the possibilities. And he said that whatever I do it is my choice but that he was very certain that he could treat me with the cyberknife machine with good outcome. If he were in my shoes that he would go for that option before considering surgery. Because this surgery is major.
Maybe he was selling me his solution, who knows. But I also keep in mind that these clinics have to keep numbers on a certain level to be allowed to treat.

So far so good. Up to next year!
For now I feel like I have my future back!


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Radiation / Radiosurgery / Re: Can/Does Radiosurgery reduce dizziness/disequilibrium?
« Last post by DanFouratt on November 20, 2025, 07:00:47 PM »
Drumfest,

I did not see the original post but just saw Michelle's.  Like her Dizziness was not an issue before or post but before there was one time I had an issue.  I am not sure if it was AN or stenosis. Since radiation I have experienced no dizzines.

Dan
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Post-Treatment / Re: Fluid Under Skin of Surgery Site
« Last post by Mark F. on November 18, 2025, 08:34:00 PM »
Sorry to hear about your issue.   I don't have experience with pain, I was lucky enough to actually be in less pain after surgery than before.  But the swelling and sleeping thing I have a question about.  Did you try a different bed or pillow?  I noticed after my surgery that I was having problems sleeping, and although it didn't hurt I did have swelling that felt weird.  For me a new pillow and a change in sleeping position seemed to help.  I say seemed to, because I'm not sure if it was that or if the swelling just stopped happening because of time.    I am 6 months post op now, and I do still have to watch my sleeping position, if my neck isn't supported right I will have a headache on the AN side.
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Radiation / Radiosurgery / Re: Can/Does Radiosurgery reduce dizziness/disequilibrium?
« Last post by mwatto on November 18, 2025, 07:25:47 PM »
Hi I did not have dizziness pre or post radiation. I did read this article recently however linking dizziness in AN to anxiety - mmight help to work on that aspect. Another thing is to check your medications if on eg even statins can have dizziness as a side effect, as do some health conditions like low blood pressure:  https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/2839530?guestAccessKey=aa803a9d-f934-4dab-b140-9924cd8ac6fc&utm_medium=email&utm_source=postup_jn&utm_campaign=article_alert-jamaotolaryngology&utm_content=olf-tfl_&utm_term=100225
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Post-Treatment / Fluid Under Skin of Surgery Site
« Last post by jorsto on November 15, 2025, 04:36:07 AM »
Hello,

I’m 11 days post middle fossa surgery.  They said to expect swelling but I’m noticing that every night I wake up with more swelling than when I went to sleep.  It feels like liquid between my skull and skin and can gently press certain areas and hear the fluid.

Is this actually normal?

Other side effects post surgery:

- 10/10 pain on glutes and bottom of leg to calf. I went in for a blood clot check and came back negative.  I can’t sleep no matter what medication I’m given as nothing fixes the pain.
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