Author Topic: Newbie and concerned  (Read 1854 times)

DanRobertson

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Newbie and concerned
« on: January 30, 2025, 03:11:08 pm »
Hi All,
So glad to have found this place and to hear all the stories which, while sad to read, also come as comfort that there is hope!
I developed what I thought was BBPV on the 18th November 2024, quite sudden onset over a few hours, As the day progressed I developed really bad rotational vertigo and could barely walk to the train from the platform without nearly vomiting, every movement was gut wrenching.
I spent the next week trying to stay still and things slowly improved as I expected it would. I then started to get a deep ache in the ear that I was sure was affected and noticed some tinnitus. I knew that this wasn't right so went to se my doctor as I was worried I had an AN or MS (I have a family history of MS). My doctor was very relaxed, looked in my ear, said I had an infection and tried to give me antibiotics which I flatly refused and said it wasn't an infection as the symptoms didn't fit.
I went home and got an appointment with an ENT consultant a week later, he agreed something wasn't right, checked my hearing which was reduced in my left ear and we got an MRI. On the 17th December I got a call saying it wasn't MS but was an acoustic neuroma/vestibular schwannoma, my first response was "I knew it was, I said it wasn't an infection".
I was referred on to an ENT who specialises in AN's who showed me the scan it was 14x8mm and the Facial nerve and auditory nerve were displaced and obscured in the IAM. By this point I had started getting some tingling sensations in my face and was getting pain in to my ear, mastoid and my neck and a few pains around my mouth on the left. He said I should get a repeat MRI in 6 months and didn't see concerned about my facial symptoms as the tumour wasn't touching my trigeminal nerve.
Since then I have had worsening tinnitus and 10days ago started with sudden severe pains shooting in to my face and the pain in to my mastoid and my ear is worse, it throbs and i'm getting pain in my upper left lip and jaw. I have a dry left eye that's quite sore (using lubricating drops every hour) and have seen my family doctor who has given me pregabalin which helped initially but the pains have returned again today and the tinnitus is louder and I keep losing my balance.
Im really not happy at having to wait until June for another MRI. Are these symptoms normal? Should I be getting something done? I'm worried that now i've got these symptoms that if I have radiation therapy any inflammation will just make things worse and have a higher risk of causing facial paralysis. Does anyone else thing I should be getting a 2nd opinion? My wife thinks my lower lid looks a little saggy today which is obviously more of a concern and it does feel a little odd...
Diagnosed December 2024 14x8mm

DanFouratt

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Re: Newbie and concerned
« Reply #1 on: February 01, 2025, 02:12:25 pm »
Dan, sorry you are here but welcome.  I am not a doctor but if it was me I would get a second (third) opinion at a high volume center.  They are many here that will do it via phone.  There some great centers out there; San Diego, Cedars-Sinai, Stanford, Vanderbilt and others.  I had both UNC and Duke in my back which helped and yes I saw both of them on the radiation and surgery side as well as talked with a few others leaders across the nation.  I have found this group both the medical professionals as well as the members to be very sharing.  I would pick up the phone and make some calls on Monday.

I struggled at first between Radiation and Surgery.  I put a thought matrix together (let me know if you want it) and decided on radiation.  I also acted while the tumor was smaller and the symptoms were not really bad (tinnitus and hearing loss). As the surgeon I was drilling one time said to me, you forgot the most important question.  The then said "this is not my first rodeo." My advice is find an experienced medical professional.

Good Luck on your decision journey.

Another Dan
Dan Fouratt             64 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

DanRobertson

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Re: Newbie and concerned
« Reply #2 on: February 03, 2025, 11:28:22 am »
Thanks so much for your response. I’m seeing a neurosurgeon on Wednesday who I believe is quite experienced with ANs. if you could share your thought matrix that would be great, thank you.

Is it usual to have facial pain and eye symptoms and be left on watch and wait? My understanding was that if you’re getting anything other than the expected tinnitus and hearing loss, which can be expected whether it’s growing or not, some form of intervention would be appropriate?
Diagnosed December 2024 14x8mm

DanFouratt

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Re: Newbie and concerned
« Reply #3 on: February 04, 2025, 06:28:20 am »
Good Morning Dan,

Please send me your email address at Dan4att@gmail.com. I will send the sheet.  Where are you headed for your appointment tomorrow.  Please let me know how it came out.

Sorry about the delay in responding but I been out of touch traveling.

Good luck on your journey,

Dan
Dan Fouratt             64 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

DanFouratt

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Re: Newbie and concerned
« Reply #4 on: February 16, 2025, 05:17:42 am »
Dan,

Just checking in.  I have not been here in a while as I started on an all consuming project.  I hope all is well.

Dan
Dan Fouratt             64 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm