1
AN Community / Re: Hello - Just diagnosed trying to figure things out :)
« Last post by Amy1111 on May 11, 2024, 06:22:49 pm »Thank you ! It is so nice to hear from others and advice is so helpful & appreciated.
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2
Radiation / Radiosurgery / Re: Radiosurgery from a non-expert center
« Last post by drumfest on May 11, 2024, 11:46:36 am »Dan, Thank you very much for replying and telling me about your experience. It helped alot! I'm still struggling with the decision to pull the trigger. All the experts that have seen my latest MRI in March 24 say, the tumor is clearly growing a small amount and treatment is recommended. I'm having some dizziness and it has been going on for awhile, but it's unclear if the tumor is the cause. I was trying to get a definitive answer on if radiation will mitigate dizziness, but haven't gotten a clear yes or no. I was told after surgery & once the remaining balance nerve learns to adjust, dizziness will subside in time. (this is the only reason why I may favor surgery or radiation) No one wants to live with non-stop dizziness!
Thanks again!!! And, if anyone else reads these, please feel free to opine. I've learned much in the past two years through this website and other channels.
d
Thanks again!!! And, if anyone else reads these, please feel free to opine. I've learned much in the past two years through this website and other channels.
d
3
AN Community / Re: Hello - Just diagnosed trying to figure things out :)
« Last post by skier on May 11, 2024, 10:17:30 am »Hi Amy,
Sorry to hear about your having an Acoustic Neuroma. My AN size and symptoms were similar to yours in Oct. 2021 when I was diagnosed.
I'm also in rural New England, so I had some of the same questions about how to find expertise. I considered Boston hospitals and MDs, as well as the Mayo Clinic (MN). I had surgery at UCSD, choosing to travel to San Diego for the best surgical team in terms of reputation and published outcomes. I felt I could trust in them. It was a great decision for me.
By the way, Tufts U. Medical Center has a surgeon Dr. Carl Heilman that many ANA forum patients have said great things about. Maybe you could consult with them? It's in Medford/Boston area. They have a team, and can discuss surgery or radiation, is my understanding.
(For more on my history, you can search on my nickname (skier) and read other posts. It might give you some ideas. It was an imperfect and slow process, that I went through, I think, but it worked out in the end. I hope you find a doctor you trust soon, to make it easier.)
Your symptoms in your last paragraph all sound typical to me as a patient. The acoustic neuroma has many potential side effects, unfortunately. Everyone has slight variations, but yours all sound familiar.
By the way, if you can get Vestibular rehab (physical therapy), it can help you now and in the long run. There are specialists in neurological problems who can help with balance issues. Try to follow-up on that if you can. (I regret that I waited two years!)
Since surgery, I am deaf in one ear, and I still have tinnitus, but the wonky head/headaches, facial twitches, and balance problems are now in my past. Those are resolved--and the tumor is no longer pressing on the brain stem, so my heart rate is back to normal.
And--the tumor is no longer a threat to my well being as it was removed (total resection). I have adapted and have no regrets. I consider myself lucky. Not too many decades ago, the prognosis for these tumors was much worse.
All best,
Skier
Sorry to hear about your having an Acoustic Neuroma. My AN size and symptoms were similar to yours in Oct. 2021 when I was diagnosed.
I'm also in rural New England, so I had some of the same questions about how to find expertise. I considered Boston hospitals and MDs, as well as the Mayo Clinic (MN). I had surgery at UCSD, choosing to travel to San Diego for the best surgical team in terms of reputation and published outcomes. I felt I could trust in them. It was a great decision for me.
By the way, Tufts U. Medical Center has a surgeon Dr. Carl Heilman that many ANA forum patients have said great things about. Maybe you could consult with them? It's in Medford/Boston area. They have a team, and can discuss surgery or radiation, is my understanding.
(For more on my history, you can search on my nickname (skier) and read other posts. It might give you some ideas. It was an imperfect and slow process, that I went through, I think, but it worked out in the end. I hope you find a doctor you trust soon, to make it easier.)
Your symptoms in your last paragraph all sound typical to me as a patient. The acoustic neuroma has many potential side effects, unfortunately. Everyone has slight variations, but yours all sound familiar.
By the way, if you can get Vestibular rehab (physical therapy), it can help you now and in the long run. There are specialists in neurological problems who can help with balance issues. Try to follow-up on that if you can. (I regret that I waited two years!)
Since surgery, I am deaf in one ear, and I still have tinnitus, but the wonky head/headaches, facial twitches, and balance problems are now in my past. Those are resolved--and the tumor is no longer pressing on the brain stem, so my heart rate is back to normal.
And--the tumor is no longer a threat to my well being as it was removed (total resection). I have adapted and have no regrets. I consider myself lucky. Not too many decades ago, the prognosis for these tumors was much worse.
All best,
Skier
4
AN Community / Re: Hello - Just diagnosed trying to figure things out :)
« Last post by UkulelesAreAwesome on May 10, 2024, 05:46:14 pm »Hi Amy. I was diagnosed with AN similar to yours. Left ear, similar size, but I had already lost most of the hearing in the ear. I was sent for the MRI when I failed a hearing test. I was diagnosed in April 2022. I was referred to a neurosurgeon and met with him in June 2022. He only does surgery. I had decided on radiation so I was referred elsewhere and met with doctors in July 2022. I had gamma knife in August 2022. The head frame is not as bad as it appears. I was not back to normal in 2 days like some people. It took time. I had vestibular rehab in November 2022 but the balance problems occurred a few months later. I had my one year MRI the end of July 2023. Everything looked great. A few months ago headaches got worse and facial spasms started. I had an early MRI last month. It shows my tumor has increased. They're not sure if it's swelling or growth. So I need another MRI in October and may find out if I need surgery. I don't want surgery. Headaches seem to be common for most of us along with constant tinnitus, vertigo, balance issues and ear fullness. I have great days and bad days. The wait from one appointment to the next certainly does feel like an eternity though, doesn't it,? It's not easy to adjust to a new normal. It's not easy to identify as a brain tumor patient. For the most part, things went as expected for me and went well up until recently. I live in a small town so my neurosurgeon and neurotologist are 3 hours away but always available by phone or within the my chart app. I had avoided research of surgery but have started looking into options just in case. My understanding of the Mri report is that the tumor is attached to the nerves and in your case (and mine in 2022) it's growing toward the brain. Mine has increased enough to be leaning on the brain and making contact with the brain stem but I'm very hopeful it's a bit of delayed swelling. I've read there are cases of pseudoprogression at 6 months and delayed pseudoprogression at 18 months. So I'm hanging in there and not making any hasty decisions about surgery. I sleep more than I used to. I exercise some but I don't overdo it. I understand how you're feeling.
5
AN Community / Hello - Just diagnosed trying to figure things out :)
« Last post by Amy1111 on May 09, 2024, 10:20:13 pm »Hello -I am in Western MA. I was just diagnosed w an Acoustic Neuroma by MRI w contrast. Just got results on May 1st. Report says :There is Enhancing lesion in the left internal auditory canal which protrudes into the cerebellarpontine angle cistern consistent with a vestibular schwannoma. This measures @ 14mm transverse x 9mm AP x 6mm cranioaudal. Brainstem appears normal. Fourth ventricle is in the midline.
My GP has referred me to an ENT-- the 1st available appointment anywhere thus far across the state is July 19th , at a satellite office of MA Eye & Ear. The Boston Eye & Ear main hospital told me the 1st available opening was not until January of February !! This is the beginning of May
Is it normal to have such a long wait?
If anyone has any insight on my report, or advice in general, please feel free to share with me.
I have been reading a lot and am familiar w treatments but of course there are still so many questions. Mostly timeline and appointments - choosing the best Dr. etc.
--> I have had 2 past CT scans of my head w out contrast which were "normal" , no findings. Both times were ER visits from HORRIBLE SUDDEN vertigo. Tumbling and spinning . Vomiting - and all other bodily functions lost all together beyond my control. Inability to speak or think. The 1st was @ 5 years ago , the 2nd was last March 2023. They feared stroke thus the CT scans. No stroke "Vestibular neuritis" was what I was discharged with the 1st time after a few days stay -- last year it was "vertigo". Each time the vomiting and spinning only stopped after anti nausea meds + IV Prednisone. Walking was difficult days after. I have had a few mini vertigo attacks that were short lived but passed and did not require a hospital visit.
Over the past 5-6 months I have begun to get headaches way more often than usual -daily at times @ 5pm or upon waking- cluster type behind my left eye-(but I do have pinched nerves cervical spine also ) I have mild ringing in my left ear, pretty much always , but ignorable - It's worse when it's quiet - I keep white noise + fans on -- at night when I lay flat in bed ringing is louder. I haven't noticed any hearing loss. I do have periods where ear feels full or clogged and my jaw at same time in very back at hinge area kind of dull numb. This had decreased since i started taking allergy medicine daily. I am a bit unsteady wobbly on feet but I have always been clumsy) I have found my self queasy more as of last 2 months- car sick feeling almost and especially when in restaurants or busy gatherings. Weird. I know.
Thanks for listening . I look forward to any advice) ~ Amy
My GP has referred me to an ENT-- the 1st available appointment anywhere thus far across the state is July 19th , at a satellite office of MA Eye & Ear. The Boston Eye & Ear main hospital told me the 1st available opening was not until January of February !! This is the beginning of May
Is it normal to have such a long wait?If anyone has any insight on my report, or advice in general, please feel free to share with me.
I have been reading a lot and am familiar w treatments but of course there are still so many questions. Mostly timeline and appointments - choosing the best Dr. etc. --> I have had 2 past CT scans of my head w out contrast which were "normal" , no findings. Both times were ER visits from HORRIBLE SUDDEN vertigo. Tumbling and spinning . Vomiting - and all other bodily functions lost all together beyond my control. Inability to speak or think. The 1st was @ 5 years ago , the 2nd was last March 2023. They feared stroke thus the CT scans. No stroke
"Vestibular neuritis" was what I was discharged with the 1st time after a few days stay -- last year it was "vertigo". Each time the vomiting and spinning only stopped after anti nausea meds + IV Prednisone. Walking was difficult days after. I have had a few mini vertigo attacks that were short lived but passed and did not require a hospital visit.Over the past 5-6 months I have begun to get headaches way more often than usual -daily at times @ 5pm or upon waking- cluster type behind my left eye-(but I do have pinched nerves cervical spine also ) I have mild ringing in my left ear, pretty much always , but ignorable - It's worse when it's quiet - I keep white noise + fans on -- at night when I lay flat in bed ringing is louder. I haven't noticed any hearing loss. I do have periods where ear feels full or clogged and my jaw at same time in very back at hinge area kind of dull numb. This had decreased since i started taking allergy medicine daily. I am a bit unsteady wobbly on feet but I have always been clumsy
) I have found my self queasy more as of last 2 months- car sick feeling almost and especially when in restaurants or busy gatherings. Weird. I know. Thanks for listening . I look forward to any advice
) ~ Amy6
Radiation / Radiosurgery / Re: Radiosurgery from a non-expert center
« Last post by DanFouratt on May 08, 2024, 05:40:03 pm »I am not a doctor simply a person who went through radiation.
In my decision journey I looked at high volume AN surgeons. I believe this is a must. There is experience required to open up the brain.
When I talked to Radiologists I was satisfied with high volume tumor treatments. I never asked the doctor I selected how many AN tumors she treated. I had a great experience. I believe the skill is in running the simulations and looking through the data to create the best plan for radiation. This planning process is generic to all tumors. I had a team review my plan and one of them was a my ENT surgeon who was a high volume AN surgeon. So I would ask how the doctor will create the treatment plan and who is part of that team. I am not sure if an ENT is required but I was glad I had mine but it was also convenient to do so.
In full disclosure I am leaving my radiologist for the follow up as I felt the process at UNC Radiology was not patient first. This has nothing with the level of care received but how it was given.
Good luck
In my decision journey I looked at high volume AN surgeons. I believe this is a must. There is experience required to open up the brain.
When I talked to Radiologists I was satisfied with high volume tumor treatments. I never asked the doctor I selected how many AN tumors she treated. I had a great experience. I believe the skill is in running the simulations and looking through the data to create the best plan for radiation. This planning process is generic to all tumors. I had a team review my plan and one of them was a my ENT surgeon who was a high volume AN surgeon. So I would ask how the doctor will create the treatment plan and who is part of that team. I am not sure if an ENT is required but I was glad I had mine but it was also convenient to do so.
In full disclosure I am leaving my radiologist for the follow up as I felt the process at UNC Radiology was not patient first. This has nothing with the level of care received but how it was given.
Good luck
7
Microsurgical Options / Re: Supporting operations before/following retrosigmoid craniotomy
« Last post by Greece Lover on May 08, 2024, 10:03:20 am »It is definitely true that all surgeons have their preferences. I do wonder if a few things are getting confused here. There are two times that bone gets dealt with in these surgeries.
1. The craniotomy--that the hole they cut in your skull to get to the tumor.
2. the Interior auditory canal (IAC).
there are different options for how to replace the bone from the craniotomy. Some use titanium. My surgeon used an absorbable plate system, so that over 6-9 months the things holding the bone flap in place are absorbed by the body as the bone heals, so now I have not metal in my head.
The IAC, as I understand it, gets obliterated during surgery. Because it is so small, the just grind it away. This is where the cement/bone wax comes in. You seem to have confused the titanium plating to replace the craniotomy bone flap with the bone from the IAC. I don't think they ever do that. There may be other products than cement to fill in the IAC after tumor removal. (For me, the harvested some belly fat to put in the IAC, and then covered it all with "bone wax," whatever that is.)
I don't know if I"m making sense, but it does seem in your second point you can the craniotomy and IAC parts combined.
1. The craniotomy--that the hole they cut in your skull to get to the tumor.
2. the Interior auditory canal (IAC).
there are different options for how to replace the bone from the craniotomy. Some use titanium. My surgeon used an absorbable plate system, so that over 6-9 months the things holding the bone flap in place are absorbed by the body as the bone heals, so now I have not metal in my head.
The IAC, as I understand it, gets obliterated during surgery. Because it is so small, the just grind it away. This is where the cement/bone wax comes in. You seem to have confused the titanium plating to replace the craniotomy bone flap with the bone from the IAC. I don't think they ever do that. There may be other products than cement to fill in the IAC after tumor removal. (For me, the harvested some belly fat to put in the IAC, and then covered it all with "bone wax," whatever that is.)
I don't know if I"m making sense, but it does seem in your second point you can the craniotomy and IAC parts combined.
8
Physicians / Re: Seeking advice for finding surgical teams
« Last post by worshippermood on May 07, 2024, 08:00:30 pm »I had my second MRI and initial consultation at Emory. They have a good reputation. I sought out a second opinion at the Mayo Clinic as I highly respect the acoustic neuroma team they have there. The Mayo Clinic offers a video consultation at no charge -- so it does not hurt to touch base with them. In my case, the doctors at Mayo completely agreed with what the doctor at Emory told me. And that gave me a lot of comfort knowing everyone was in harmony.My mother was also treated here. The team of doctors here are extremely dedicated.
Best wishes for your daughter as she continues along this journey!
Don
9
AN Community / 15 Years later
« Last post by QRM on May 07, 2024, 06:15:15 am »Hi Everyone,
Just thought I would pop in to say hello with an update, its been 15 years since I had my surgery at the House Clinic. I know many of you are just at the start of this journey and it feels like you are facing a huge tidal wave of the unknown, feeling life will never be the same. Take it from me life has been great since the surgery, this may sound odd but having a medical emergency was one of the best things to happen, while most of my chums are going through some sort of mid life crisis wondering what life is all about, and started to wear tight spandex and getting expensive bicycles. My surgery and subsequent life after, really made me appreciate the fact that I still wake up every morning, that alone is good enough for me.
Sure I am deaf in one ear and in total darkness I get a bit disorientated, avoid going to those dining in the dark restaurants. Otherwise everything is back to normal, can ski, skateboard etc. and the biggest bonus I dont get motion sickness anymore, my golf has improved, I can sleep in noisy hotel rooms (good ear on the pillow) save money on stereo system and can buy single earpieces.
Originally I had issue figuring out where the sound was coming from but somehow the brain has managed to work around that. When the other half starts to nag me, can just ignore her and blame the deafness.
I had tinnitus before the surgery, and was surprised it was still there after all the ear stuff was removed, but after 15 years I don't notice it all.
So just want to say don't worry things will work out fine. I assume 15 years on the medical field has moved on and there are newer options out there.
If anyone is in Singapore or Malaysia who wants a chat I am always here.
Rick
Just thought I would pop in to say hello with an update, its been 15 years since I had my surgery at the House Clinic. I know many of you are just at the start of this journey and it feels like you are facing a huge tidal wave of the unknown, feeling life will never be the same. Take it from me life has been great since the surgery, this may sound odd but having a medical emergency was one of the best things to happen, while most of my chums are going through some sort of mid life crisis wondering what life is all about, and started to wear tight spandex and getting expensive bicycles. My surgery and subsequent life after, really made me appreciate the fact that I still wake up every morning, that alone is good enough for me.
Sure I am deaf in one ear and in total darkness I get a bit disorientated, avoid going to those dining in the dark restaurants. Otherwise everything is back to normal, can ski, skateboard etc. and the biggest bonus I dont get motion sickness anymore, my golf has improved, I can sleep in noisy hotel rooms (good ear on the pillow) save money on stereo system and can buy single earpieces.
Originally I had issue figuring out where the sound was coming from but somehow the brain has managed to work around that. When the other half starts to nag me, can just ignore her and blame the deafness.
I had tinnitus before the surgery, and was surprised it was still there after all the ear stuff was removed, but after 15 years I don't notice it all.
So just want to say don't worry things will work out fine. I assume 15 years on the medical field has moved on and there are newer options out there.
If anyone is in Singapore or Malaysia who wants a chat I am always here.
Rick
10
Radiation / Radiosurgery / Radiosurgery from a non-expert center
« Last post by drumfest on May 06, 2024, 04:15:28 pm »Hello, I'm wondering if anyone out there can reply with successful outcomes at non-expert centers? I had an appointment with a radiation oncologist at a local hospital & he assured me he can treat my tumor as his team is excellent, but he simply just doesn't see alot of ANs because there just aren't that many that seek treatment where I live. (San Antonio) He treats many tumors and would do fractionated on my tumor with "The Edge" system. He also told me he treats many other tumors that are more difficult than mine. I'd like to go with him because it's the easiest option (insurance wise) and his team does have a reputation for being excellent. It's just an issue with the lack of patient volume he's treated with ANs & most of my radiosurgery research has been gamma & cyber knife expert centers. I'm fully aware of the possible caution with having treatment at a non-expert center. I don't want this to come back and bite me that's why I'm writing as well.
Please reply if desired. Thanks for reading.
D
Please reply if desired. Thanks for reading.
D