Recent Posts

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31
Post-Treatment / Re: Post trans lab surgery - a cosmetic question
« Last post by stevehernes on March 13, 2025, 04:01:07 pm »
How did it go? How was the recovery process for you after surgery? I know that post-surgery healing can be challenging, and everyone’s experience is different. Hopefully, you’re feeling much better now and things are getting back to normal. One thing that really bothered me during my recovery was crepey skin—it became more noticeable, and I wasn’t sure what to do about it. But thankfully, I found the crepe erase customer service number and reached out to them. They were super helpful in explaining their products and guiding me toward the best options for my skin
32
For those in the 'watch and wait' status / Newly Diagnosed Son - Need Help Please
« Last post by Jets551 on March 12, 2025, 09:45:06 am »
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


33
Microsurgical Options / Re: Travel Suggestions for UCSD
« Last post by andrewiscycling on March 10, 2025, 06:58:25 pm »
Following!  Having mine resected by these great folks on 27-May.  Beach vs walking trails vs beach community…such great ideas here!
34
Radiation / Radiosurgery / Re: My AN Story %u2013 Sydney to Stanford CK
« Last post by Maystro on March 10, 2025, 07:20:20 am »
Hi Stella and Jessica,

Thanks you very much for your answers. I am considering doing a second opinion with dr chang. Although i think i am dealing with experts in the ercm clinic in munich as well.
Hoping to come to a decision soon.

I will be reaching out to you in pm.

Thanks! Dennis
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Pre-Treatment Options / Re: Long term fasting for stopping/slowing AN growth
« Last post by andrewiscycling on March 10, 2025, 05:48:45 am »
Hey everyone, I’m about to start my 4th 3-day water fast. MRI on 17-March. 

Here’s what I’ve learned:

The 3rd fast (which I forgot to post about):
- I tracked my weight, as I saw significant body shape changes the first two times. I found I lost nearly 15lbs in 3 days…which I don’t believe is healthy.  It took me nearly 1.5 weeks to gain that back
- I also believe I over-exercised…I did some high intensity cycling sessions and a heavy lifting session. I felt like garbage the 3rd day…low energy and grumpy, but still able to have great focus for mental tasks
- At 3 days vs 4, the re-introduction of food isn’t as difficult.  I was able to tolerate a normal meal right away.

My protocol for this one will be light exercises and mobility, hopefully I won’t be as grumpy to my family!
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Radiation / Radiosurgery / Re: My AN Story %u2013 Sydney to Stanford CK
« Last post by mwatto on March 10, 2025, 03:13:07 am »
Also in Australia (Hi Stella!) I had CK in Perth. No regrets and about to have my 6th MRI. Happy to also support - I recall how very scared I was back then and a member here helped me (Paul Wellens). Mine was fairly big, cystic and very close to brainstem. However I saw the CK team first who said I was a good candidate. Last year I actually had a consult with a neurosurgeon (not abt the AN more abt some deep ear pain I have on and off pre treatment) who also said to me it would have been an easy op back then.
37
Radiation / Radiosurgery / Re: My AN Story %u2013 Sydney to Stanford CK
« Last post by SP on March 09, 2025, 06:54:15 pm »
Hi Dennis,

Yes I hear you on all the differing opinions, it's a stressful decision & I went through the same thing too. I am in Sydney Australia, and here the initial advice I had from various neurosurgeons, was to go for surgery, as you may already know, if you consult with a surgeon, they will usually recommend surgery. I made the decision to get treatment with Dr Chang @ Stanford due to his experience in CK and specifically at that time (2015) he had worked on over 50 tumors around my size, (that was 50 more than any of the GK or CK sites in Australia). Like you I was very motivated for the least invasive treatment.

To answer your question, yes my tumor was displacing the brainstem at the time I did my treatment.
Happy to chat with you if you have more questions, feel free to direct message me if you like.

Wishing you the best as you navigate this decision, this forum is an exceptional resource.

Stella
38
Radiation / Radiosurgery / Re: Mass General or NYU for Radiation ?
« Last post by JLR on March 09, 2025, 05:59:10 pm »
Dr. Susan Pannullo she is the absolute best I have yearly MRIs.  I had surgery 2016 with Dr.Steig but Dr. Pannullo the neurologist radiologist is my go to!
39
Radiation / Radiosurgery / Re: Seeking input on SRS decision
« Last post by richcooks on March 07, 2025, 02:30:35 pm »
I find that your condition is a little peculiar in that the tumor is not growing yet you have bouts of vertigo and hearing loss.    Out of my own curiosity, did your Doctor explain how the AN is contributing to these conditions when I assume you went years with none of these symptoms?
I had fractionated sterotactic radiation... in 2010.  My AN was discovered in 2003 as 1mm.  Tiny tiny tiny.  It grew 1mm a year and 2010 I had to decide which treatment to do.  Oddly enough my brother discovered he had a AN at the same time as me.  I live on the Jersey shore.  Lots of Medical facilities to choose from.   I visited UPenn and others and did a lot of research.  The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife.  Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue.  That was 15 years ago, it may be different today.   Fractionated are smaller doses given over a period of time.  Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment.  I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc..  Here I am 15 years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear.  My brother lives in Rochester NY and he chose Gamma Knife.  Lost his hearing in his affected ear.  What I learned was that you need to search out the doctor who does the procedure you want.  The expert at UPenn only did Gamma Knife.  After meeting with him and based on all the research I did I decided that I wanted Fractionated.   One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"

I hope you have a good outcome with the treatment you choose. 

 
40
Radiation / Radiosurgery / Re: Committing to Radiosurgery
« Last post by richcooks on March 07, 2025, 02:17:59 pm »
I had fractionated sterotactic radiation... in 2010.  My AN was discovered in 2003 as 1mm.  Tiny tiny tiny.  It grew 1mm a year and 2010 I too had to decide which treatment to do.  Oddly enough my brother discovered he had a AN at the same time as me.  I live on the Jersey shore.  Lots of Medical facilities to choose from.   I visited UPenn and others and did a lot of research.  The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife.  Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue.  Fractionated are smaller doses given over a period of time.  Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment.  I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc..  Here I am 15
 years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear.  My brother lives in Rochester NY and he chose Gamma Knife.  Lost his hearing in his affected ear.  Keep in mind this was 15 years ago.   The question to ask your Doctor is how will Gamma knife treatment affect my hearing?  What I learned was that you need to search out the doctor who does the procedure you want.  The expert at UPenn only did Gamma Knife.  After meeting with him and based on all the research I did I decided that I wanted Fractionated.   One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"
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