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

I live in Dallas, TX and am set to have Cross Facial Nerve Grafts aka Facial Reanimation surgery by Dr Shai Rozen at UT Southwestern this upcoming July. I just had my second AN surgery, they completely removed tumor as well as my facial nerve, so I woke up with complete facial paralysis on the right side of my face. He plans to take nerves from my ankle and graft them into my face to restore my smile/bite and closure for my eye. He is amazing and he has an incredible success rate and website with all the details of different procedures he performs. Every patient you know has unique needs so the most important part is not to wait and get an option if you’re having facial issues right away.

Hi, so glad I found this group. My 22 year old son just had an MRI yesterday due to his extreme hearing loss in left ear. The Dr. wanted contrast but we said no, my son has extreme phobia of anything medical and it was hard enough doing the MRI. I have viewed the report this morning, have not talked with the Dr. yet but it shows a 1.8cm presumed vestibular Schwannoma and it says slightly reduced T2 signal within the left cycle is nonspecific. Suggest a post contrast study for further characterization. I'm so worried as he is only 22 and it's already grown to 1.8cm. He is already depressed in life and has OCD mainly around health concerns. My questions are:
1. Anyone on here diagnosed at a young age?
2. We don't want the contrast dye at all. But I guess if surgery is recommended then should we?
3. We prefer natural ways first, is there anyone here who has found another way of treating it?
4. Anyone know a good specialist natural or otherwise in Canada preferably western?
5. Because of his young age, does this mean he may have the genetic disorder that goes with this?
Thank you all in advance.

Thank you !   It is so nice to hear from others and advice is so helpful & appreciated.