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Post-Treatment / Re: MRI at 14 post SRS shows enlargement: swelling or growth
« Last post by DanFouratt on June 03, 2025, 10:12:49 am »
Carrie,

I would echo Michelle thoughts.  We all react differently and we should not stress.  For other reasons my first was at 8 months and my second will be at 26 months. My my doctor and I are comfortable because if it grew he would recommend staying in the observation mode for longer. No mention of action for several more years if I need it. I would ask your doctor how long they observed before recommending action or how much does it need to grow before recommending action.  My SRS surgeon did talk about the swelling (a little too much) before the surgery.  She wanted follow up much more often and I asked why.  She did not have a good answer so I went back the the ENT for my monitoring. All he said was if if I have more symptoms let him know.  It is now 19 months post and I have no new symptoms, still tinnitus and loss of hearing, but no change.

Good Luck,
Dan
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Archives / Re: Vertigo as first symptom
« Last post by healthhelp on June 03, 2025, 03:43:53 am »
I used to get dizzy spells and had trouble with balance. I started using VertiAid, a natural dietary supplement designed to support inner ear health and reduce symptoms of dizziness and vertigo. It’s helped a lot with balance too. You can check it out here: https://usa-eng-vertiaid.com
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Post-Treatment / Re: MRI at 14 post SRS shows enlargement: swelling or growth
« Last post by mwatto on June 01, 2025, 06:57:27 pm »
Hi I think there is a video by Dr Chang that mentions this in the webinar library. So he says that swelling (pseudo progression) can go on for about 3 - 5 years. I would think that your AN is responding well to the treatment and its not growing. I think Chan says he defers monitoring for the first 3 years because of this aspect. In any event I think your is still responding and should settle down and shrink. Paul Wellens another member mentions how 'My tumour started at 10x5x5mm At 6 months got bigger 13x6x7mm if my memory serves me correctly at 2 and 3 years it shrank a little at 4.5 years it had grown to 16x8x8 and I was told radiation had failed by my Australian Specialists. I then spoke to my treating surgeon Dr Muacevic in Germany at the European Cyberknife Centre and he said it was still too early to tell and we should continue to watch and wait. At 7 years it had shrunk to 14x7x7 My last MRI was at 12 years and it was down to 12 x 6 x 5.' I hope Paul doesnt mind me sharing- but it does show that response is not predictable and you should not stress!
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Post-Treatment / MRI at 14 post SRS shows enlargement: swelling or growth
« Last post by carriekartman on June 01, 2025, 11:18:07 am »
Does anyone know the window that's reasonable to expect increases in swelling from SRS ? I had swelling that they said was expected, on a scan at 6 months post-radiation, but my scan this week (14 months post radiation) shows the tumor is even bigger. I'm waiting to talk with the docs, but would appreciate any insights in the meantime. I need to uncover if this is growth from swelling, and how we can tell, if that's even possible. The dimensions from first observation in 10/23, to this week: 1.2 x.6 x.6 to 1.8 x 1.2 x 1.1 Advice welcomed!
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Microsurgical Options / Re: Middle Fossa - Canada/Toronto
« Last post by greenamw on May 29, 2025, 01:22:44 pm »
I haven’t had middle fossa surgery myself, but someone close to me did it a few years ago, also in their early 50s. Hearing preservation was a big goal, and they went through a ton of research before choosing a surgeon. It wasn’t easy finding someone in Canada that had a lot of experience with the middle fossa approach, and that was kind of frustrating. Eventually, they went with a doctor in the U.S. just to have that higher confidence in the surgeon’s familiarity with the procedure. The idea of preserving hearing pushed them to go ahead with it, even if it meant the travel and extra cost. On a totally different note, if you do ever look into logistics or international moves related to surgery or follow-up stays (some folks combine it with recovery elsewhere), I came across this page on how much does it cost to move to Japan:

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AN Issues / Re: Riding motorcycle after surgery.
« Last post by greenamw on May 29, 2025, 07:57:22 am »
I had middle fossa surgery a few years ago, and getting back on two wheels was definitely something I worried about. I waited around 3-4 months before feeling steady enough to try, and even then I took it super slow with short, low-traffic rides. My balance was better than expected, but quick head movements were weird for a while. Over time, the confidence came back with muscle memory, and now I ride just like before. I’d say listen to your body and don’t rush—it’ll probably come back gradually.

When I was ready to get back into it, I actually had to ship my bike back from my brother’s place. I found this option to ship car to Cape Town, and it turned out simpler than I expected. If you ever think of taking your rides abroad again, that's worth a look. You can check on https://www.a1autotransport.com/ship-car-to-cape-town/
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Facial Issues / Re: tears
« Last post by Yousef_blue on May 29, 2025, 05:31:32 am »
Hello everyone, I had an AN surgery 6 months ago (25mm_23mm) have lost hearing in the side and developed facial paralysis right after the surgery!

Too tough! I couldn’t even look in the mirror or take photos for more than 5 months!

The first improvement was almost after 3 months (nobody could tell I had palsy in rest)

Pronouncing some letters got a bit better, on top of that I  see some considerable movement in my cheek, which is very promising, remember that having hope, PT sessions and exercises in front of mirror have helped me unimaginably!

Don’t force your face to have any movements, be so gentle in everything


And last but not least! Never compare yourself with anyone! Trust the process
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AN Issues / Re: 12mm to 14mm in 3 months
« Last post by sissyn on May 28, 2025, 10:33:02 am »
Hi Kamama62 - MRI showed same 14m and my appointment was canceled with neurosurgeon on 5/19 moved to 6/6, so still waiting.  My facial tingling is now a daily on/off thing instead of intermittent.  I will keep you posted.
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Inquiries / Due an MRI
« Last post by Sanshine on May 28, 2025, 06:35:32 am »
Hi,

I've been suffering with balance issues for 7 months.  It started with BPPPV so full on spinning with head movement that was treated with the epley maneuvers.  I was fine then until around 3 months later after a cold.  I started feeling really unsteady and floaty with staggering sometimes.

I was diagnosed with vestibular neuroticism,  given anti biotics and anti sickness pills.  Eventually referred to a balance clinic who said its likely PPPD and referred me to vestibular rehabilitation.  I was also getting brief episodes if numbness in my right cheek, pulsatile tinnitus and some nerve pain in the right side of my face and cheek.

After 3 months the symptoms all settled and I felt back to normal.  I'd been doing the rehab at home as still waiting for the appt to come through for rehabilitation.

Then an appt came through for ENT who told me the balance clinic tests were showing an issue with my right side ... the side of the tinnitus.  He's referred me for an MRI.

After getting much better in March over the last month the symptoms are back.  I feel my head is a second behind the rest of me and stagger and bump in to things and people all the time.  Ent say I have mild hearing loss on the right ear. 

As the Consultant said they were checking for a localised issue with the ear I googled and came to this site.    I don't have the main symptom of this which is hearing loss ... just wondering if anyone else has been first diagnosed with PPPD ... persistant postural dizziness, and then found to be an AN?  My symptoms match PPPD but also seem to match some sumymptoms of an AN.

I have felt as though I'm going mad with my balance being so off .... I just want to feel normal again. I keep having to explain I've got vertigo to people... not drunk!

Thank you for any feedback,

Sanshine

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Post-Treatment / UCSD for the win...a short story about my translab
« Last post by andrewiscycling on May 27, 2025, 06:39:11 pm »
Hey everyone, I would like to add to the plethora of wonderful existing post-op updates to help give some context to others.

I had my surgery on 28-March at UCSD with Dr Friedman and Dr. Swartz, who removed by 3.7cm AN.  My experience was similar to nearly everyone else’s: they are professional, courteous, and make the process feel effortless.  From the moment you commit to receiving care from the team, the orchestration begins and is a thing of beauty to experience from a patient’s perspective.

Melissa scheduled all of the pre- and post-op appointments, provided detailed instructions, put you in touch with various resources you will need during your stay (for instance the UCSD Family House) and was there to answer any questions and set expectations.  All of the pre-op appointments went smoothly, and they were always on schedule, which was indicative of how tight of a ship they run and the respect they have for their patients.  The day of the surgery, the admission process was SUPER smooth: one single payment for all the services provided…all appointments, hospital charges, anesthesia.  This was very helpful in easing my mind and not worrying about surprise charges later.  It also helped to know that I would meet my insurance’s deductible and out of pocket max at this time.

In my opinion, this next bit is where Dr. Scwartz and Dr. Friedman started to show their TRUE professionalism.

My surgery was originally scheduled as the second surgery of the day on the 27th.  Just as I was about to start the pre-op preparations, and I mean they were just about to stick the IV line in, they came in and asked if they could move the surgery to the 28th because their first surgery was going long.  They could have proceeded as planned, they could have knocked two surgeries out in one long day, they could have had a Friday off.  They chose to come back fresh the next day so they could be calm, focused, and give me the best chance of a successful outcome.  For this, I am eternally grateful…the surgery went exactly as expected: I lost 100% hearing in my left ear.  No tinnitus or headaches. 

Now for some details on my recovery thus far: in summary, the physical went faster than the mental.

My ambition during recovery was to do as much walking as I could handle.  Realistically, I walked as much as I could, but it wasn’t as much as I expected.  My routine for the next 4 weeks ended up being walking, watching youtube, listening to audiobooks, and sleeping. 

Starting out, I spent the largest portion of my time sleeping.  I felt this was a good metric to track early on.  I didn’t sleep much during my 3 days in the ICU.  By the end of week 1, I had gone from 4 naps per day to 2.  By the end of week 2, I was napping once per day.  By the end of week 3 I was napping once every few days.  Since returning back to work after week 6, I did feel I was mentally exhausted most days and napping became more of a regular thing when I worked from home.  I should mention that I work in an office, so mentally work is more taxing.

Walking started at 5-10 min x 4 per day.  By the end of week 1 I was walking 10-15 minutes 4x per day.  By the end of week 2 I was walking 20-30 minutes 3x per day.  By the end of week 3 and beyond I was walking 1hr 3x per day.  Always including as much of the vestibular exercises as possible.  An important note here, that until the end of week 5 I was acutely aware to keep my heart rate low using my wearable HR monitor.  Stay safe, sometimes the hills can really get your blood pumping!  I resumed some light weight lifting and cycling after week 6, and those have resumed with no issues to normal at this point.

While your brain is adjusting, your eyes will be doing some funny things.  Video calls with my family and watching videos was dizzying for some time, so I had to take those in moderation in the first week.  I also expected to be able to read a fair bit with all of this downtime, but turns out my books were dead weight!  Audiobooks became my pastime while I shut my eyes. 

All things considered, I feel like my recovery went fairly quickly, and I credit that to a few things.  First, come into the surgery as physically fit as you can; it helps get you back out of bed and start recovery.  Secondly, UCSD’s surgical team and process are second to none; Dr. Friedman and Dr. Swartz and their staff demonstrated they always put the patient first, my outcome being a testament to that.  Thirdly, take recovery very seriously; I am mostly always moving, so it was very easy for me to over-do physical therapy portion, and I had to dig deep inside to rest.

At the 8 week mark, I am enthused to report I am nearly fully physically recovered.  I just cycled 85miles with my normal cycling group and am lifting ~85% of my normal working weight again.  Work has been tough reacclimating after 6 weeks completely off.  I should note that I work in an office.  I get mentally fatigued around 2-3pm, and breaks seem to help (or a nap if I’m home!).  Many have said that it takes 3-6 months for that to subside, so I’m hopeful. 

My key takeaways from this experience were that you can and should control how you come into the procedure and how you recover.  Focus on that instead of the what-ifs.  You can’t control the surgery, only the team that will perform it, so put it in the best hands possible and let it be.  UCSD and the combo of Friedman and Swartz did me that service. 

I documented most of my journey in bitesize YouTube shorts: https://youtube.com/shorts/NCBKvm182vs?feature=share
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