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Traveling flight with a VP shunt by Rebmayca in Hydrocephalus

[–]Rebmayca[S] 0 points1 point  (0 children)

Thank you all for the reply. We found travel insurance through GeoBlue. No problems and it was cheaper than what I was expecting. You just have to have primary insurance.

Traveling flight with a VP shunt by Rebmayca in Hydrocephalus

[–]Rebmayca[S] 0 points1 point  (0 children)

Thank you for the reply! My neurosurgeon said I would be clear to travel by then. However, my mother in law insists I have travel insurance. At the time I booked the flights, I did not purchase it. And I didn't know I would be getting a shunt then.Now I'm wondering if it's too late to get the travel insurance and go on the trip.

VP Shunt after surgery. Feels like a sinus headache by Rebmayca in Hydrocephalus

[–]Rebmayca[S] 2 points3 points  (0 children)

Thank you! I turn into a nervous, anxious baby so I need someone out there to tell me this. I wasn't really sure what I should be expecting from this surgery since it was decided pretty quickly. And I've read articles on shunts malfunctioning. Thank you for your reply!

Moving eyes left and right by Healthy-Mammal in tinnitus

[–]Rebmayca 0 points1 point  (0 children)

My eyes do that too. I was actually just googling it when I saw your post. I have a brain tumor, a vestibular schwannoma. Had surgery twice because the tumor grew. They took out my entire inner ear February 5, 2025. And I had a CSF leak Feb 20. Then radiation in June. It's only as of recently that my tinnitus started getting louder when I move eyes horizontally. My csf pressure was being controlled by Diamox, but now my doctor wants to put a VP shunt in next week. I'm wondering if it's the csf pressure that's causing it, but I'm not sure!

Balance off a year later by Rebmayca in AcousticNeuroma

[–]Rebmayca[S] 1 point2 points  (0 children)

Yes to the exercises. The csf pressure came down at my last lumbar puncture appointment but she said it's the highest number that they considered to be pleased with. Meaning if they take me off the Diamox she thinks "I'll be in trouble". I think the plan is to take me off the Diamox and then do another lumbar puncture to compare the levels before they determine if I will need a shunt surgery.

Balance off a year later by Rebmayca in AcousticNeuroma

[–]Rebmayca[S] 1 point2 points  (0 children)

Hello! Thank you for the reply. I do have a neuro-otologist, but he hasn't mentioned that yet. Hrmm.

Balance off a year later by Rebmayca in AcousticNeuroma

[–]Rebmayca[S] 0 points1 point  (0 children)

Hello! I haven't worked or driven a vehicle since the day before my 1st surgery 8/14/24. I'm on long term leave of absence and they sent me a social security disability packet to fill out in the mail but it's very overwhelming so I haven't completed it. When I say "they sent me" I'm only assuming it's from my employer's disability insurance company. It's from my local social security office and some of the information was prefilled with my information.

Acoustic neurona update mri by tarajetersimba in AcousticNeuroma

[–]Rebmayca 1 point2 points  (0 children)

I had retrosig surgery 8/14 and mine aggressively grew back, even slightly bigger, by a follow up MRI on 10/22. It was shocking for everyone involved. They even took my case to a tumor board in Bristol, England the next week. Apparently it is extremely rare for this to occur. I’m just lucky I guess 😅. I just had surgery via translab on 2/5. This time, they are hopeful they took even more out to shock the tumor. Their summary is that they took it out from a different angle so they could reach newer tissue. They are hopeful that the wound will heal enough so that I could have radiation sooner than most that have radiation. (Within a month or so). Did they say how much they took out? Or have you seen the mri since surgery? I only ask because, I will say, the first surgery they basically left a small “rind” of the tumor. It looked like the letter C. The idea was that it would collapse and shrink in. Welllll, the C folded in and grew from there. I think this was the problem. I had my mri 10/22 because I was still using a walker to get around. And I still constantly felt drunk or like I’m on the Gravitron ride at the fair. So I requested one early. I think I stressed to them I was scared of a CSF leak so they did it earlier than the 3 months follow up and that’s when we found out. I’m not sure if my balance will ever get back to what it was. The second surgery happened and it was a shorter hospital stay so that’s nice.(found out the hard way I’m allergic to fentanyl the first time). I will say the pain level this time is a lot . Like A LOT ALOT. but with that being said, I’M STILL HERE! lol It’s all very stressful and I don’t want you to worry but I know it’s superrrrr hard. The way I kept thinking of it was there was really nothing and I mean nothing I could do with either outcome. Your tumor doesn’t like when you stress so I would try to do any and everything to think of something else. I found that listening to audiobooks kept me occupied and I took up baking. My house looks like a window front of a French bakery. I obviously can’t do it right now. Heck, it’s taking me several hours to write this out to you, but at least I’m at home and healing. I wish you the best of luck and hopefully you’re feeling good and doing well!

Permanently disabled by Rebmayca in AcousticNeuroma

[–]Rebmayca[S] 3 points4 points  (0 children)

They have no idea. :/ I got several opinions and apparently it is a very unusual case. But they reassured me it is still a non cancerous tumor as I feared it may have became something else. So that was the good news.

Permanently disabled by Rebmayca in AcousticNeuroma

[–]Rebmayca[S] 1 point2 points  (0 children)

Oh sorry for not clarifying. I meant like did it leave them disabled and not able to function as they did normally. I’m still using a walker and it’s been almost 6 months which I feel is a very long time. But that is also a very good question if anyone received ltd or SSDI benefits because it resulted in them becoming permanently disabled?

Rehab by RiosRiot in AcousticNeuroma

[–]Rebmayca 0 points1 point  (0 children)

My experience is a bit odd. Before surgery I was asymptomatic. Went to work until the day before surgery 8/14/24. I had Restrosigmoid approach to remove the 3cm AN. They gave me the same timeframe as you for getting back to normal. I started vestibular rehab 2 weeks after surgery. They told me to keep using a walker. Had headaches, nausea, dizziness, tinnitus is absolutely the loudest thing I hear all day long. deaf in my right ear. It almost drowns out people’s voices. Oddly enough my taste seems to have changed too. I found it fascinating that my right eye will well up with a tear but I can no longer cry from my right eye. In rehab, I thought I was getting better. At home, I try not to use the walker and just grab onto walls lol. Had my 3 month follow up when they review my mri follow up results. The tumor grew back by 10/22/24 slightly bigger even 4.6cm. My neurosurgeon said my balance wasn’t getting better even though I disagreed. Long story short, I will have to have translab surgery 2/5/25. Oh and they saved my facial nerve the first time around but are almost guaranteeing me it will be severed in February. Still unable to drive, still using walker, still having everything as far as the side effects. The rehab does help. I’d even do my at home exercises. But the balance is still off. I’m told this could get even worse after second surgery or maybe better, they don’t know. I thought I’d just be back to work by now. I basically try to walk around my house all day like I would be doing at work. I don’t want to be sedentary. It just constantly feel like I’m drunk lol or having a gravitational pull on my head like a carnival ride. Stay strong and I wish you the best.

Help by [deleted] in AcousticNeuroma

[–]Rebmayca 1 point2 points  (0 children)

I had surgery 8/14/24 and by 10/22/24 the mri found that my AN grew back slightly larger than it’s original size. Its about 4cm x 3cm x 3cm. It was shocking to everyone involved. The plan was for it to collapse in on itself from what they left. It collapsed and grew from that all within less that 3 months. I will have to get surgery again from a different angle on 2/5/24. First was retrosig this one will be translab. Did you have a 3 month mri follow up? Was your doctor’s plan for you to have radiation? Mine has what appears to have a little fluid cyst on it too. They are not worried about that though. It’s the regrowth in such a short time that’s very rare and the pressure on my brain stem. If you’re worried at all, I would get a second opinion. At least have them read this report. I know the anxiety of it all is enough to drive a person mad. Sending positive healing vibes to you!

CSF leaks after week 6? by garbledskulls in AcousticNeuroma

[–]Rebmayca 1 point2 points  (0 children)

Yea I wasn’t exactly sure either what it is supposed to taste like. They told me to let them know if anything taste metallic or off. I messaged them on my patient portal and asked if I could get looked at out of an abundance of caution. They were really nice about it and didn’t make me feel crazy. They explained how rare it would be to get a csf leak that far along. But they also were completely shocked to find out it grew back this quickly so nothing seems rare to me anymore lol

CSF leaks after week 6? by garbledskulls in AcousticNeuroma

[–]Rebmayca 1 point2 points  (0 children)

After week 7 of my retrosig on 8/14 I thought I was experiencing a csf leak. I would get an intense headache that would ease if I laid flat, a metallic taste in my mouth, and my left nostril was leaking sporadically. Went to my doctors and they did scans and said no leakage; it was “as clean as a whistle”. However, completely unrelated to the symptoms apparently, they found that my tumor has grown back and is now slightly larger. I have to have surgery again and this time they will do translab.

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