28 Years Old - Need to make a decision

[carlnealee]

Hi All,

I have been reading many of the posts on this thread and it has provided some comfort in the fact that I know I am not alone.
 
I am 28 years old with a Neuroma, maximum dimensions within the cerebellopointine angle is 13mm, I have been told that there has been unequivocal growth in the past 12 months, so acting now rather than waiting is the best port of call.

I lost my hearing overnight, currently sitting at about 30% left so almost useless, tinnitus and a few balance issues also.

Due to the size of the neuroma and my age, there are arguments for both treatments, I was leaning more towards radiotherapy as it is less invasive however as explained by the radiographer there could be some serious risks a way down the track.

I was wondering if there were any other members that have been in a similar position at my age and if so how did you come to the decision.

Thanks in advance,
Carl

[mwatto]

There are some drug trials going on https://www.bbc.com/news/uk-england-devon-59710739 might be worth exploring. I had CK five years agao - cant say I have had any side effects as yet. I am a lot older then you however (63). I recently saw a neurosurgeon who said to me that I should have opted for surgery re was still young at diagnosis in 2019. If I had the choice again despite it shrinking by half I might look into newer options even ask re gene therapy, immunotherapy, clinical trials (uni of Plymouth has some ongoing work).

[bri-82]

You might ask to neurosurgeon about the chances of full removal given your case. Make certain you speak with a surgeon that specializes in the condition, performs the procedure with regularity, and has done many procedures over the years. Sometimes the surgeons can look at the MRIs and get a reasonable idea as to the possible complications: facial nerve (or other nerve) damage, brain stem or cerebellar involvement etc... You might find that surgery has a much higher chance of long-term success (or vice versa re radiotherapy).

~BM

[donjehle]

Hi Cari,

Thank you for posting on the forum.  I was hoping that some who are in their twenties or thirties would respond to your post.  They have been where you are.  And we have a number of young people who have had to struggle with their decision on what to do considering their age, tumor size, and other factors.  You may have already sought a second opinion, if not, I heartily recommend it when someone is going to treat your brain.  Try to gather as much information as you can so that you make an informed decision.  But you already know all that. 

I wish you well on your journey!
Don

[carlnealee]

Thank you for all responding

Yes, I am seeking a second opinion, I will also be joining a support group call on Zoom for individuals with Neuromas under the age of 30 who have had treatment and also in a similar position to myself who are yet to undergo action. So I am happy with the progress from reaching out to forums such as this and others, if anyone does come across this and is wondering whether to post or seek help from others I would recommend doing so!

Again thanks for coming back to me and for your words of encouragement.

Carl

[Matey]

Hello Carl! I was 38 when I had my radiosurgery! It has been 2years and 5 months now. I have some facial twitches here and there especially when exercising because of the blood flow. I guess it triggers the facial nerv somehow. Other than that no other issues. I check my hearing every 6 months and it has went down slightly..Good luck in whichever therapy you chose..

[gbly]

Carlnealee,
I was not as young, but my AN was similar in size and turned rapid growth.  I lost my hearing overnight too.

I was thinking remove it, but after looking at all of the radiation and some still have to have radiation after surgery, I went to radiation. I am glad and the percentage of success made me very comfortable.  I did get some synkinesis after the radiation but that to me confirmed I did the right thing cause surgery would have lost my facial nerve or still would have had to radiate.

Very personal how you go, but you are in the right place.  I just had my 3 MRI and all is going well.  I will say I am glad I went how I did.  Keep us posted and depending on where you live, OHSU in Portland with Dr. Blair Murphy or Oklahoma with Dr. Jaboin all day long!  Good luck and keep us posted.
v/r GB

[pateln6]

Hello Carl,

Just to give you different perspective. Sharing my AN journey. At age 35 I was diagnosed with AN approx 2 cm. Initially I opted for Cyber Knife radiation treatment in 2018. In the following MRI scans in 2021 tumor should growth, so it was determined that my radiation failed, I was one of 20% unluck once where radiation doesn't have expected outcomes.

In 2021 at age 38 I had no option but to go for surgery. Surgery after failed radiation is very ticket and risky. Selected experienced surgeons in AN Dr James Evans (neurosurgery) & Dr Thomas Willcox (ENT) at Jefferson Neurosciences in Philadelphia.

My surgery was successful with just hearing loss, all other functions are intact. Road to recovery after surgery is different for every one, but I was told age is on my side so my recovery will be faster. Post one year of surgery I am back in routine life, with minor headaches when I perform certain activities. Headaches are improving at very slow pace but its definitely improving.

Just wanted to share my story so you get one more reference and hopefully it helps with your decision.

Thanks,
Naman

[gbly]

Naman,
Thank you so much for your story.  Such a hard place to be and so thankful you came through with success.  We all worry when we make the decision and sorry to hear (no pun intended) to see you have to go through both experiences.

Thanks.
GB

[v357139]

I would definitely go for a second opinion and possibly even a third.  You will find that different doctors have different opinions.  My advice is go to a top surgeon to hear what he says on surgery.  And go to a top radiosurgeon to hear what he says about radiosurgery.  And try to get a sense from them of their own personal success rate.  Although this is hard to get from them, just try to get what you can.  I worried about this so much.  But in the end I got my 35mm removed and I am now good to go!!!  If I got through it with my excessive worry, you will get through it too.

[gbly]

carlnealee,
Wanted to reach out and see how it is going.  What direction did you decide?
No wrong answer only what makes you comfortable.
GB

[Hahanghan]

Thanks for sharing your story. It takes courage to reach out, especially when facing tough decisions. It's understandable to feel uncertain with such a complex situation.I believe hearing from others who've faced similar challenges could offer valuable insights. Have you considered seeking advice from support groups or connecting with individuals who've been through similar health journeys? Also, decision-making can sometimes feel like rolling the dice. Have you ever tried using a dice roller to help make choices? It might sound unconventional, but it could add an interesting perspective to your decision-making process.

[DanFouratt]

I am not 28 not even 2 x 28 but I went with Radiation.  I wore out many surgeons and oncologists in making my decision.  Like you, I had limited hearing, so the long term issue of hearing loss was not considered by me.  I put a long chart together outlining what a learned for each option on the table (CK/GK and the three surgeries).  There are several great meetings on this website in the history.  They are referenced in my chart, and I will see if I cna put a list together for you.  If you want it reach out to my personal email (Dan4att@gmail.com) and I will send it.  In my decision journey the one bit of advice I got that really stuck with me is either decision is correct.  When you make it do not second guess yourself but focus in getting the best outcome.

Just to let you know I am going in for open heart surgery.  I will have several procedures tomorrow morning and should be able to respond in the afternoon or possibly Thursday morning, then the bog event will happen.  After that response might be in a week if all stories are true.

Sorry you are now part of this club but understand this is a great group.  I went from crazy to I got this thanks to the support of the members here.

Keep communicating and you will continue to get information.

Best of luck in your decision journey,

Dan

[Michellebelle007]

Hi- my greatest sympathies for you, I also have an acoustic neuroma. Something to think about is are you ok with the symptoms you have now, can you live with them for the foreseeable future this way? If so I would lean to Radiosurgery, as it is less invasive and will success will keep it from ever growing again. On the other hand if your symptoms are very bothersome, as hard as surgery is, it may greatly reduce those symptoms, given a successful surgery. I have had surgery, it partially regrew so I had Proton Radiation, and unfortunately now it may be regrowing again and I may need surgery again (during both my pregnancies I experienced rapid regrowth). So I have had both, and while neither are cure alls because each of these tumors react so differently in each person..I will say after my initial surgery it took a few months to get back to 100% but I felt so much better, and it lasted for years until the regrowth. Alternatively before radiation I began to experience symptoms, after radiation and those symptoms have stayed the same. This was my experience, wishing you the best in your journey.