Has anyone experienced terrible ear pain with AN. My doc has prescribed gabapentin for the nerve pain.

[Thyroid95]

Ear pain

[Bad1]

Hi, my first symptom was earache which wrongly assumed was an ear infection. From what I have understood , pain is usually associated with small growths ( pre treatment). Not sure how big your AN is, I would consult with your specialist , -gabapentin has its’ side effects too.

[Martin-mtig]

Hi I replied under your other thread. sending big hugs.

[Thyroid95 in reply to Martin-mtig]

I got it this morning. Thanks for all of the information. I am in the US. I have been suffering alone with AN for 3 years. So glad to have found this site to be able to converse with others regarding their symptoms. I have a friend in medicine that I want to read your response because I think some of the meds you mentioned aren’t what we have in the States. Anyway , I really appreciate all of your suggestions. I have seen an ear specialist but he wasn’t really concerned. He just put me on Gabapentin to control the pain and others watch and observe every year. I have decided to seek another opinion. I have an appointment at Mayo Clinic in 2 weeks will post myPost appointments results. Many thanks for this site.

[Martin-mtig in reply to Thyroid95]

You're very welcome. They'll have Diclo - push them. What state are you in? If you can get to NYC I can give you hte name of a close friend who is a leading AN (now called Vestibuylar Schwannomma) specialist with NYU Langolme and others in the USA.

What size is your tumour may I ask? Sounds like you're getting a runaround. Mayo is agood option. GET PUSHY. Tell them you want Cyberknife.

PS. I'm orginally from the states. Nice to meet you. Feel free to message me.

[Thyroid95 in reply to Martin-mtig]

Thanks, I don’t even know the size. I have had several MRI scans and no one had told me the size. I have been told that it doesn’t appear to have changed in size.

[Martin-mtig in reply to Thyroid95]

I would suggest you ask the Mayo for a complete second opinion, and demand from the other provider access to the original scans so they can tell you the size. This is basic information dealing with this, and odd you haven't been provided it imho. You'll have to fill out a pile of consent forms to access your records, but worth it. You might actually call the old provider in advance of your Mayo clinic appt and get the ball rolling on it.

*IF* it is confirmed not to have grown, you may be in a good place of maintenance, watch & wait. From the info I was given, these tumours either (in order of prevalence) grow very slowly, stop growing, or some cases they actually can shrink.

However, even if it's not growing and on the larger side - they might want to treat to try and relieve symptoms.

Again, I am not a doctor, etc. but this is info I was given along the way & researched myself - and not on google. Again, probably not that anyone is holding out - a lot of them just don't have the experience or up to date information - which is why I support this charity to try and change this.

[Kristyll]

If it’s a nerve those tabs will dull it but if it’s really agony get checked for Trigeminal neuralgia and it is no joke