NF2? I'm not sure after my MRI

[Casaldyco]

Hi! I'm new here (obviously... this is my first post!) But a lot has happened to me in the past two months.
Ohhhhkay, here we go.  For the past few years I've had a lot of widespread nerve pain; my primary doctor, bless her, has tried to hard so help me feel better. She sent me to a rheumatologist to make sure it wasn't autoimmune, and during his exam he said "you have neurofibromatosis?" and I asked, "what's that?"  He ordered an urgent derm appt for a few days later and that was confirmed. Now I only have maybe 20 around my stomach and back, but he said I immediately need to see ophthalmology, ENT, and neurology. I also have several cafe au lait spots, no learning disabilities either.  In the meantime these dizzy spells that I'd been having off and on stepped up, as did the headaches/migraines, even landing me in the ER a few weeks ago because it was so bad I started vomiting. I've had an "ear issue" for the past few years though, but I put it on the backburner because it seemed so small in terms of the other things I had going on. During my follow up with my primary she did the Rinne test and I had zero bone conduction so she said it was a good thing I was seeing the neuro in a few days.

When I saw him, he confirmed the hearing issue and ordered an MRI which I had yesterday. This morning his nurse called me to say "no clear mass" and to follow up with the NF clinic at Johns Hopkins which he had already set up earlier and I'll be going in November. Before then I need to see the ENT in October but now I'm thinking... what is going on?!? No clear mass tells me no tumor... or does it mean "maybe one too small to see"... or, he just doesn't know? It was pretty clear after that first appt that he was sending me to Johns Hopkins for ALL treatment. I had briefly mentioned the connection between mast cells and low vitamin D (which I have) but he said "let Johns Hopkins handle that."

I saw the ophthalmologist on Monday and he confirmed no eye issues: optic nerves clear and no lisch nodules (NF1) and left with a new RX for my glasses.

I continue to have balance issues, fullness in my right ear, horrible tinnitus (it's so piercing today and it hurts) and my headache, which is a daily thing, is on the right side of my head. But still... my MRI sounds like it was normal.

To my knowledge, no one in my family has NF1 *or* NF2

I'm not the sort of person to sit and just relax until I go to Johns Hopkins and I'm not sure what to do with myself

[CHD63]

Hi Casaldyco and welcome to this forum .....

It sounds like you are a careful, pro-active kind of patient ..... so am I so I can relate!  So sorry you are dealing with multiple issues all at once.

My first question for clarification:  was the MRI you had yesterday done with contrast?  If so, it should pick up even a small AN.  If not, small ANs can easily be missed ..... especially if it was not done in a Tesla 3 machine that takes closer slices of pictures.  That being said, "no clear mass" does not really tell you anything.  It could be they are seeing something but cannot define it as a mass at this point.

Your other symptoms of balance, fullness, tinnitus are frequent symptoms of an AN, but they can also be symptoms of other non-tumor ear-related conditions.  Only a neuro-otolaryngologist can usually tell for sure.

Many of us have sent our MRIs to multiple physicians with vast experience in treating specifically acoustic neuroma.  ANs truly are rare enough that most general neurosurgeons see relatively few in the course of their practice.  In your case, especially, you simply want the most experienced AN doctors giving you opinions.

Many thoughts and prayers.

Clarice

[Casaldyco]

It was with contrast, but I have no idea what kind of machine it was. It was brain and IAC.

All I know is that I feel awful and have for a very long time. My "diagnosis" keeps evolving so we never actually get to a treatment

PS.. thank you for the warm welcome!

[CHD63]

Hi again .....

Admittedly I know very little about NF2.  Hopefully some of our NF2 AN patients will respond to your post.  The ones I know all have had more than one tumor in the brain and/or spinal tumors.  I do not know anything about skin lesions associated with NF2.

Keep us posted on what you find out.

Many thoughts and prayers.

Clarice

[TheStruggle]

It was with contrast, but I have no idea what kind of machine it was. It was brain and IAC.

Hello, your post was quite long and I'm not a doctor of course. This seems really bizarre as you have many of the symptoms of an acoustic neuroma. But I think it would be obvious on an MRI even without contrast if you had headaches due to it (or any other head tumours). Don't forget that the hearing and balance issues can be due to inner ear problems, and that you'll only hurt yourself more if you start worrying about NF2 when this MRI came up "clear" (its been 4 months since my NF2 diagnosis and I am fine, I've never had vertigo or anything). Can I ask where in the head you got/get the headache? A particular side or just over all?

ANs truly are rare enough that most general neurosurgeons see relatively few in the course of their practice.

I really don't know what to say, ANs represent about 6 to 10% of all brain tumours, so they aren't particularly rare at all. I mean its not common by most people's standards, but then again, the overall number of brain tumours isn't very large.