ANA Discussion Forum
General Category => Inquiries => Topic started by: Hipmom123 on May 15, 2024, 10:31:49 am
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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.
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Hi Hipmom123 and welcome -
I'm sorry to hear about your son and glad you are connecting with the ANA. I hope other young patients will respond and share their experiences here.
In the meantime, please check out our young adult resources for additional information and ways to connect at https://www.anausa.org/community/young-adult (https://www.anausa.org/community/young-adult)
Best to you and your son and please reach out if you have questions or need more information.
The ANA Team
volunteers@anausa.org
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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
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Thank you sooo much for your response and information. I really appreciate it! I have heard it is a good idea to wait a bit before treatment to see, as sometimes it quits growing. I wonder what the statistics are, I'll have to keep looking. Thanks again.
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Hello, I was 29 when I was dx. If he is not having any issues I'd watch and wait. Let him know, it will all be ok.