I’m almost 3 weeks post surgery for my AN. I have a pouch at the top of my incision that goes from my temple into my ear that the doctor believes is CSF. It’s not actually leaking out, no dripping from my nose or ear or salty taste in my mouth, it’s just collecting under the skin. I have been on Acetazolamide for one week and haven’t had much success in drying it up. My doctor wants to keep my stitches in, he’s worried it will start leaking out. This is my second surgery for a regrown AN, so they took my facial nerve this time and I’m dealing with a paralyzed face on the right side also. A symptom is shooting pain from the jaw and that is happening from time to time but I don’t think it’s CSF related. Has anyone had CSF leak under the skin? What did you do to resolve it? I’m hopeful it will resolve and they won’t have to go back to repair it or get a shunt. I did have this same issue in 2018 for my first surgery but it quickly resolved in a matter of days after I was put on the same medicine. It seems to be smaller when I lay down and after sleeping overnight but then refills once I go vertical. I’m also getting pains from that spot spontaneously. Any advice is appreciated.

Hi all,

I was diagnosed with a 4mm AN during the pandemic.   It hasn't grown in the last few years though I have HF hearing loss and tinnitus and pressure on that side.

In the last couple of weeks, I've had three separate days of vertigo and dizziness.  At first I thought it was an ear crystal thing but now I'm wondering if it's the AN.   My last MRI was not so long ago and showed no growth.

Has anyone else had this with such a small AN?

April 29 I had an appointment with a PA to check my new abutment and she gave me the okay to start using my BAHA again. She set an appointment with an audiologist for that afternoon. There was a certified audiologist there and a student working on certification and I was going to be her final patient for here graduation and the conclusion of her Phd. She was moving on to the Cleveland Clinic. I am really happy I decided to get a new abutment and keep using my BAHA.

Welcome, Hipmom123, to the ANA Forums!

While most of us on the forums are older, there are a number of young people in their 20's and 30's who post here.  Often they are very fearful and anxious.  But once they have their treatment, they learn that life does go on, and often they do not stay on the ANA forums for long.  Those of us who are older tend to hang around longer.  But if you search, you can find the posts of the young people.  And check out the resources for the young adults as the Director posted.

In regards to the contrast dye, I understand your concern.  My acoustic neuroma was very, very small when it was discovered, and the contrast dye helped my care staff to be able to see it better and that is why I elected to go with the contrast.  I figured the negative effects of the contrast dye were not as bad as the specialists not having a good view of my tumor and making a wrong decision.  But each person needs to make their own decision in regard to the contrast dye.  And your son's acoustic neuroma is large enough that I do not know how much value the contrast dye would give the care team.

I also prefer natural treatments, but I have also learned that sometimes there is a need for surgery or radiation, the benefits of which are not always available through natural means or it may take too long to achieve success through natural means.  (I used to be a hospital chaplain, and I saw cancer patients who wanted to try natural means, but when the natural ways they tried didn't work, it was too late to do surgery or radiation, and the patients died).  Fortunately, acoustic neuromas are not malignant, and are typically slow-growing which gives us more time to seriously consider what treatments we think will be most effective for us.

I do not believe that just because your son is young that it is evident that he has any genetic disorder.  Again, I am not a medical doctor, but it seems like the young people who post here are not suffering from any genetic disorder. So, I doubt that is the situation with your son.

When any of us receive the acoustic neuroma prognosis, it is very stressful, and we become quite anxious.  But, as I said above, most of the young people are quite resilient and usually do well after their treatment.  They learn that they can have a full, rich life.

I wish you both the very best on this acoustic neuroma journey!
Don

Hi drumfest,

I would really encourage you to seek care from those who have a lot of experience with acoustic neuromas.  There are a lot of well-meaning healthcare providers who do not see many AN patients, and they believe they can treat the AN because they treat other cancers.  But acoustic neuromas are much different than other types of tumors.  And these boards occasionally post horror stories where the patient went to a local hospital because the provider promised that they could take care of the AN, and then the patient had terrible outcomes.

Your brain is not something to take lightly.  You want those who are highly skilled with a lot of experience to take care of it.  Please do not let someone without much experience 'learn' on your brain.  If they mess up, you often do not get a second chance.

I won't say that no one who goes to a non-expert center never has a positive outcome.  But for me, it's not worth taking the risk.

I wish you the best on your continued journey!
Don