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41
Radiation / Radiosurgery / Re: My AN Story %u2013 Sydney to Stanford CK
« Last post by Maystro on March 07, 2025, 10:08:59 am »
Hi here. I am new to the group.
I am reading your updates and seeing that your tumor size was quite big. Mine is 25 by 15mm and going a bit crazy with all the different opinions on it.
Regarding the tumor size before treatment i recon that your tumors were well against the brainstem right?

I have spoken to a specialist center in munich. He saw absolutely no issue in treating mine with CK and was confident that this should be my first line of treatment.

But other center. Maybe less specialist said that there should be surgery followed by GK treatment.

So i am completely mystified now to what is what.

I seem to lean towards a less invasive treatment at first for sure. Especially when reading that most papers out there say up to 25mm radiation should be first line of treatment.

Hopeing to get some feedback on your specifics with regard to brainstem.

Best dennis   
42
For those in the 'watch and wait' status / Has anyone tried Lenire for Tinitus?
« Last post by buddha on March 07, 2025, 02:16:52 am »
Hi,

  I got an ad for Lenire and I wanted to see if anyone has used for their tinnitus and if its helpful.

Thanks!
43
I was diagnosed with AN in jan this year 1.3 *1.1 cm
I have occasional tinnitus no hairing loss at all but now i have twitching on AN side and numbness on cheeks i am worried now what to do continue with wait and watch or proceed to radiation treatment (can not do surgery since NS are not as much exp withis tumour in my country)my NS appointment is not until next month. Those who had similar symptoms on wait and watch did you choose treatment or continue to wait ?
44
Radiation / Radiosurgery / 6 months after Cyberknife
« Last post by Jennifer1969 on March 05, 2025, 09:23:41 pm »
Hi All,

I had CyberKnife six months ago and things were going very well until about a week and a half ago. I lost a lot of my hearing and started on DEXAMethasone and then the tinnitus started. Most of my hearing has returned and I am now off of the DEXAMethasone but the tinnitus is just louder and louder and relentless. I read that it can take a few days for the steroids to leave your body to bring your nerves back, but I’m really afraid this is going to be forever. It sounds like there’s a wind storm in my ear and it will not stop. There is absolutely no relief.  I do have my MRI on Friday so I’m hoping to find out more. I’m just wondering if anybody else has experienced this and what was their outcome?
45
Robin,

I had some heavy head and worse tinnitus 3 to 4 weeks post CK.  My doctor said it was normal and not to worry about it. It did pass and I was back to "normal" several weeks later.

Dan

46
I’ve started having facial spasms and strange heavy feeling in my head. Sort of feels like my head is going numb. Just weird!! My Dr. doesn’t seem too concerned, but it doesn’t feel right to me.  Anyone have strange feelings in their head after GF? My tumor is only 7.3 mm. 

Thanks!
47
Inquiries / Re: Safe pain relief?
« Last post by mwatto on March 02, 2025, 06:51:11 pm »
My specialist said no ibuprofen straight after CK re risk of bleeding. He did say panadol was fine. I think voltaren gel be ok also-maybe ask (can also get a physio gel at pharmacy). Massage and warm pads may help, infrared too.
48
Inquiries / Safe pain relief?
« Last post by GMDizzyndeaf2 on March 02, 2025, 08:02:44 am »
Hello,
  Hopefully someone can help. I just pulled a muscle in my back and was wondering what is safe for us to use. I had GK about 5 1/2 months ago. Last I remember they said no NSAIDS but I am not sure if that was only afterwards or for life.
Thanks for any help!
49
Inquiries / Re: type of MRI
« Last post by windingshores on March 02, 2025, 12:37:03 am »
Symptoms are worse.  I am concerned the MRI will increase tinnitus, which is "reactive." I know I have to do it. MRI of brain with and without contrast, and MRI of upper cervical spine are all ordered.
50
Post-Treatment / Re: 3 Days Post-Retrosigmoid Surgery at UCSD Report
« Last post by christopherbench on February 28, 2025, 05:11:45 pm »
Just wanted to offer a follow-up from 9 months out. Someone messaged me about the rest of my recovery, so I'ma paste here my message to them:

Hey, sorry for the slow response. Just to clarify, first: Dr Friedman was always for the retrosig approach.

Re: my post-op experience, as I wrote in my initial post, the first 12 or so hours just sucked. The walls kept slipping and sliding across my field of vision, and the vomiting was both frequent and projectile.

That said, I started recovering quite quickly. By the time I left the hospital (3 days post-op) I was walking around quite well on my own. My first day out of the hospital, my fit bit informs me that I walked just shy of 10,000 steps — the result of an extended walk to a taqueria near my airbnb. At that point, I was basically fully mobile, and by a week out, I was averaging over 10K steps a day, with the SoCal sun and heat more of a problem than my actual surgical recovery (we were pretty far in from the coast and temps were in the high 90s). By two weeks out, I was regularly walking over 20K steps per day and felt comfortable driving and getting on a bike. Bike riding posed some minor balance issues initially (basically, looking over my shoulder was disorienting), but that faded within the first couple hours of returning to riding.

I probably could have driven a car pretty much as soon as I left the hospital, but my family was around to give me rides and not many places to go, so I played it slow and safe — no need to dance with the devil if I didn't have to. I did experience some mild vertigo occasionally while driving for the first couple-few weeks  — but I was basically 100% behind the wheel within, say, 3-4 weeks.

I did physical therapy for a few weeks, which was helpful with keeping my already-quite-limited vertigo in check, but I stopped going before the end-of-run since my symptoms were so mild, and my therapist was clearly running out of stuff to tell me other than 'keep doing the same thing.' That's not meant as a slight to my therapist, who was great. Since then, my vertigo has remained mild, but it does worsen slightly if I spend too much time at my desk (talkin' like 50 or 60 hr weeks) at which point a make a point to get up and about or to resume some of the PT exercises.

I've also started, in the last couple months, to get brief, but occasionally pretty intense headaches if I'm exercising in a way that leads to my blood pressure rising quickly. Deadlifts are pretty much right out, and I image that if I tried to hang upside down it would probably start sucking pretty fast, but I'm a 42 year old man who no longer spends all that much time playing on jungle gyms, so that doesn't really come up very often.

My hearing is pretty much exactly as it was when I went in for surgery (moderate loss in upper registers in one ear), for which I am profoundly grateful. Truly, one of the great wins of my life. I love music and listen to it pretty much constantly. I'm so happy that I can still enjoy (almost) every aspect of it. I did get a hearing aid, and it's helpful, tho I found it rather irritating at first, but if you wear it for a few months, your brain really can adapt to it, tho it can be a cacophonous journey to get there.

All in all, I'm tremendously lucky and deeply grateful — to Drs. Friedman and Schwartz and the whole UCSD team, to my employer for giving me good health insurance and ample time to recover, for my family for supporting me, for my friends for emotional support. My outcomes were basically as good as I could possibly have hoped for. I know that's not true for everyone (especially on the boards here, which understandably tend to foreground people with complications), and I try not to forget how lucky I am or to undervalue the hard work of those who helped me get here.
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