Newly Diagnosed Son - Need Help Please

[Jets551]

Hello,

Last week my son (20 years old) who is in college about 3 hours away called me with tingling in his jaw and right hand. I advised him to go to the emergency room and immediately drove up to his college to the ER to be there with him. He had a CT scan that was negative and the next morning they took an MRI without contrast that showed a small vestibular schwannoma in his left ear. The ER doctor advised seeing a neurologist next to have an MRI with contrast to see if it is actually a schwannoma or if it's something else like a cluster of blood vessels. Because he goes to school in upstate New York we made the decision to take him to a Neurologist back home which is in NJ close to NYC.

The Neurologist (Mario Vukic) was excellent and what we learned at the session with him was that my son also showed 3 bulging discs in his neck as well as his Thyroid levels were out of whack, and he was diagnosed with Hashimoto's a few years back.

We followed up this past week with an MRI with contrast which the Neurologist confirmed is a vestibular schwannoma in his left ear the size being 7x4x4.

At this time he wants to have him see an ENT asap to get the hearing test results to see if there is any impact to hearing and he said most likely we will want to take a wait and watch approach and have another MRI done in the summer before he comes back. However, since the visit last week my son has now gotten symptoms of ringing in his ears, migraine headaches and a feeling of pressure in his ear.

We are not sure if it's related to bulging discs, schwannoma or thyroid which can cause tingling feelings in extremities when not normalized.

Next steps:

ENT visit on Monday 3/17
Nuerosurgeon visit Dr.Philip Steig NYC (2nd opinion) on Tuesday 3/18
Follow up visit with Neurologist on 3/19 to discuss 2nd round of MRI with contrast results and latest symptoms

On top of this between the Schwannoma, Thyroid and bulging discs you can imagine the stress and anxiety and I know he's struggling a bit coping and processing all of this at 20 years old. I'm trying to locate a therapist for him to talk to that can hopefully manage some of this going forward.

I am beyond devastated at this diagnosis and struggling myself through this but trying to stay strong for my son. Can anyone advise is there anything else at this point I should be doing other than the Dr visits I have setup?

Thank You

[DanFouratt]

Jets,

Sorry you are hear especially with it being your son.  It sounds like you are doing all the right steps.  I had a VS and it is now "behind" me. If you need information as you progress through this please reach out. Either here or at Dan4att@gmail.com.  First is sounds like you are dong the right thing today, understand the problem. Your steps here sound like they are on point.

Now as a father of a child who had cancer which I had a struggle.  I wanted information NOW and that was not possible.  My wife was even more stressed.  It took me some time to learn but stay calm.  Learn you have to wait and stressing over that does no one any good. My journey took a month from suspicion to confirmation of the issue.  Day three of this I discontented the internet. My wife was finding one bad thing and then another worse thing from his symptoms. I told her planning for 25 bad things does us no good and only causes internal issues.  The day we found out what is was was not a great day but it did allow us to create a plan of action.

Just would like to confirm the UOM is in MM not CM?

Good luck on your journey,

Dan

[Jets551]

Thank you so much your response is so helpful right now.

It is mm not cm

Thanks

[Jets551]

My son saw a Neurosurgeon Dr.Philip Stieg in NYC today.

After reviewing all MRIs he was not willing to call my son's tumor a vestibular schwannoma. He said based on the MRI it has a very irregular pattern and felt it could possibly be a venous malformation or a cholesteinoma both also benign tumors that could have been there since birth.

Next steps recommendations were also to watch and wait and come back in 6 months for another MRI, DWI imaging and CT scan with thin cuts.

Dr was outstanding and made my son feel comfortable in that he wasn't going to die and he can live a normal life and go back to college and monitor his symptoms.

If down the line there are more symptoms or the tumot grows to the point they feel they need to be more aggressive with treatment we will make a decision at that point.

This has him and all of us extremely anxiety ridden and trying to get him to talk to a therapist as even myself this has been heart wrenching watching him go through this and worrying about my son.  I have been having panic attacks worrying about him but need to be strong for him as this will be something he will have to look after for the rest of his life.

Any others deal with crippling anxiety around these disgnosies?

Thanks

[JLR]

Hello your doing all the right things. Your son needs to know he is fine and just has to follow doctors orders and check his health every 6 months.  I have had 3 surgeries.  AN with Dr. Steig.  A tumor in my skull with Dr. Cameron Brennan at MSk and a throidectomy at White Plains Hospital with Dr. Kaare Weber. The last two surgeons I mentioned were fabulous. I would highly recommend them These doctors are amazing.