Author Topic: recently diagnosed - questions  (Read 2011 times)

October

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recently diagnosed - questions
« on: December 26, 2023, 03:51:43 pm »
Hello,

This is my first post. I'm not really sure where to start. I'll try to be brief but I tend to ramble.

I've been recently diagnosed in October based on MRI and hearing loss in right ear. Since then I've had consult with 3 doctors with Kaiser (current insurance) a neurologist, neurosurgeon and ENT. They gave me a thorough summary and aside from the neurologist that seemed to be annoyed I was asking questions, the other 2 doctors were emphathetic and answered a lot of questions.

The timing was bad as my insurance enrollment was around that same time. From what I've gathered initially, it prompted me to switch insurance in the hopes of being able to access specialists for this, but choosing a GP (PCP) has not gone well so far. Holiday time doesn't help, but getting through to anyone accepting new patients is rough. At least in the San Francisco Bay Area. I'm still looking.

I did manage to upload medical imaging to UCSD with Dr.Friedman for a free consult and 2nd opinion which is scheduled 1st week in January. I've browsed the forums and attended some groups. It's all been helpful and I'm very thankful for that. The holidays are rough as shortly after my diagnosis other symptoms started (where before it was only the hearing loss that was noticeable). My face started tingling and sensation of numbness that lasted for a few weeks. It's settled down a bit now, but now I've started to feel dizzy in the mornings and "woozy".

I'm hoping to solicit questions from anyone reading this, about what I should be asking Dr.Friedman during the consult. I'm hoping to eventually find a GP and have some traction in further assessing my symptoms and progression and start making some plans on dealing with this.

Any recommendations anyone has are appreciated.
Dx Oct '23 : 5mm x 4mm x 5mm,
long gradual moderate hearing loss in right ear so far,
advised wait and see for 2nd MRI in April '24,
Dec '23 : started experiencing facial symptoms,
trying to get opinions from UCSD (Dr. Friedman)
and Stanford (Dr. Chang)

bfoley

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Re: recently diagnosed - questions
« Reply #1 on: December 27, 2023, 05:18:13 am »
Welcome to our club October - Sorry you had to join but the folks here are very friendly!

There is a print out of questions to ask - and you can vary them based on your situation.  I copied the ones applicable to my situation, then added a few of my own and brought them to my appointments.  I also brought someone with as you can miss some details.  Its quite a lot and fairly overwhelming.

They are located under the General Category, From ANA and the second thread down - Questions for your physician - print out and take to your next appt.

I found it helpful to read others questions and the answers they received.  It set expectations.  This tumor is life altering but not (to my knowledge) life ending.  I expected things to be different, but am able to do the things I want, perhaps with a little modification.

Wishing you peace on your journey!

donjehle

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Re: recently diagnosed - questions
« Reply #2 on: December 27, 2023, 08:28:18 pm »
Hi October, and welcome to the ANA Forums!

Thank you for making your first post here.  And I hope you will continue to be active in our community.

bfoley is a great asset to the forums, and her suggestion on where to find the questions to ask your specialist is right on the mark!

While your GP is important for so many health issues, I think your most important decision for acoustic neuromas is whom you are going to choose to do the treatment?  Some people on these forums have chosen specialists without much experience in treating acoustic neuromas, and they have suffered horrible results.  They may have gone to them because they were close by where the person lived (and they did not know any better). 

While awful results can even come at the hand of the most experienced specialist, they tend to happen much more often to those who do not treat acoustic neuromas very frequently.  So, if I was going to give you one piece of advice, it would be this:  Find specialists with a lot of experience in acoustic neuromas.  Consult with one who specializes in surgery for acoustic neuromas and consult with one who specializes in radiation treatment.  Or find a center which has both skilled surgeons and radiologists who work together as a team.  After hearing why both kinds of specialists believe their approach is better for your situation, then you are more able to make your decision. 

Best wishes on your journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DanFouratt

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Re: recently diagnosed - questions
« Reply #3 on: December 28, 2023, 03:44:36 pm »
Hello October,

I went on a detailed review of my options and talked with many specialists in my decision journey. One thing you should be aware of it Surgeons think everything should be resolved with a knife.  I had one of the four I talked with admit it to me.  On the other side, all oncologist think some should glow especially if the tumor is small enough. Please speak to both specialties. As you can see from my signature block I went with CK.

Another thing I learned on my decision journey you need to be your on advocate. No one will do this for you.

In the decision making process my wife called me obsessive and she might be right.  I created a chart and with the two general radiation approaches and the three surgical approaches across the top and 20 to 25 items of interest done the left. I each intersection I wrote what i knew about the procedure and how it interacted item of interest on the left.  (I rambled here.) This matrix help me keep track of what I was hearing and learning. If you think this will help you let me know and I will share.

I will echo the other comments, go to someone who has done this before.  The surgeon I would use (the one I started with) if I need surgery in the future had a great line. (PS all the other surgeons I spoke with knew him and said I was in great hands.)  After answering an exhaustive list of questions he told me I forgot one, "this is not my first rodeo."  He said that with the confidence of a leader in his field with 400 plus procedures behind him.

Best single advice I received:  No decision is a bad decision, make the decision you are comfortable with and move forward, do not second guess yourself.

It is not fun gaining membership to this group, however this group was a difference maker for me. You are not alone and there are many people here who will help you with your journey and  any question you have.  We are in this together and we all will be AN strong together.

Good Luck and Stay Strong,


Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

Greece Lover

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Re: recently diagnosed - questions
« Reply #4 on: December 28, 2023, 08:03:28 pm »
sore you had to join the club.  You've already received great advice here so I'll just add my solidarity and support! From what it looks like yours is pretty small for when you caught it, so that's a "blessing" so to speak.

Best of luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

skier

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Re: recently diagnosed - questions
« Reply #5 on: December 30, 2023, 09:13:09 am »
Hi,

Sorry you have joined the club. Glad you found the ANA.

For new patients, there is also the Free New Patient Kit, see the link at the top of the page. It has booklets on key topics (like decision-making) by leading specialist MDs. Highly valuable. If I recall, you just use the link to provide a mailing address and the ANA will send it to you.

Viewing videos by leading physicians as provided in the video library is also highly educational.

It's a very complicated diagnosis, which takes a lot of time to understand. I remember how overwhelming it was to be losing my hearing, have weaker balance, and have worries about my facial nerve symptoms--all while not knowing what to do for treatment.

Start with understanding the basics of the anatomy and the symptoms, and then you'll have a better base of knowledge for discussing treatment options. That's my two cents, I guess.

For me personally, I was so worried about  surgery complications or bad outcomes that I wanted to NOT get surgery. But my tumor grew fast and that tipped me away from radiosurgery. So, I looked for the best surgery team I could find. Researching that on this discussion forum was pretty straightforward, and luckily I could travel and my insurance covered my choice.

In the end, I am super happy to be post-surgery with great results from a great team at UCSD. It was the medical team's expertise, for me, that changed everything. That's why everyone here mentions "do your homework" when choosing your treating provider. It's a very difficult surgery. You need extremely capable people to do it, who have a lot of experience, and who can openly share their outcomes with you. It really pays off to ask the right questions, in the end.

Best to you.

October

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Re: recently diagnosed - questions
« Reply #6 on: December 30, 2023, 02:01:07 pm »
Hello all,

Thank you so much for responses and pardon my noobness regarding the questions. I recognize a few of you as frequent posters from reading the forums. I truly appreciate the community so far. It's been rough this holiday season. I'm an introspective and anxious person so any downtime has just caused my mind to spiral. I'm slowly processing all the new information and feel like I need to be Dr junior just to make sense of it all.

I've heard of LA house clinic and UCSD with Friedman and Schwartz, I have not explored other experts as much yet. Any recommendations for radiosurgery expert? I think Standford has Dr. Steven Chang if I remember right, but I'm still trying to get a GP so I can get a referal and hopefully consult there.

Dx Oct '23 : 5mm x 4mm x 5mm,
long gradual moderate hearing loss in right ear so far,
advised wait and see for 2nd MRI in April '24,
Dec '23 : started experiencing facial symptoms,
trying to get opinions from UCSD (Dr. Friedman)
and Stanford (Dr. Chang)

tonyc

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Re: recently diagnosed - questions
« Reply #7 on: January 09, 2024, 02:24:18 pm »
As I read from the posts in this forum, both radiation and surgery can generate good results if you choose experienced doctors (normally they should have dealt with thousands of cases at least). For radiation options with CK or GK, the first two years can be challenging. For surgery option, the first 5-7 weeks can be critical.

Hello all,

Thank you so much for responses and pardon my noobness regarding the questions. I recognize a few of you as frequent posters from reading the forums. I truly appreciate the community so far. It's been rough this holiday season. I'm an introspective and anxious person so any downtime has just caused my mind to spiral. I'm slowly processing all the new information and feel like I need to be Dr junior just to make sense of it all.

I've heard of LA house clinic and UCSD with Friedman and Schwartz, I have not explored other experts as much yet. Any recommendations for radiosurgery expert? I think Standford has Dr. Steven Chang if I remember right, but I'm still trying to get a GP so I can get a referal and hopefully consult there.


08/2010, first vertigo episode and tinnitus, 9mm AN found in left ear. Wait and Watch.
01/2016,  AN increased to 13mm.
03/2016, Middle Fossa at House with Drs. Brackmann/Schwartz/Stefan. Entire tumor removed, no facial issues, hearing preserved.
09/2021, MRI showed no regrowth.

mwatto

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Re: recently diagnosed - questions
« Reply #8 on: January 10, 2024, 11:08:04 pm »
I had CK (fractioned) almost 5 years ago - has shrunk almost by half last MRI (2023) about to do this years one in Feb. Will see. Hearing and balance good. My only anxiety really is that I had Covid 9 months ago and worried that may have caused issues. I had the last MRI one month before and it was really reassuring...just hope Covid didnt cause new issues.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

tonyc

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Re: recently diagnosed - questions
« Reply #9 on: January 11, 2024, 03:33:06 pm »
That's really good news. How's your first two years after CK? I have been monitoring posts regarding both radiation and surgery cases. Regrowth is a post-ops issue for both options. I saw more regrowth cases with surgery option. But recently I even saw someone's AN regrowth after 11-year post-radiation treatment. Maybe it's related to over-limit sugar consumption since tumor likes sugar?


I had CK (fractioned) almost 5 years ago - has shrunk almost by half last MRI (2023) about to do this years one in Feb. Will see. Hearing and balance good. My only anxiety really is that I had Covid 9 months ago and worried that may have caused issues. I had the last MRI one month before and it was really reassuring...just hope Covid didnt cause new issues.
08/2010, first vertigo episode and tinnitus, 9mm AN found in left ear. Wait and Watch.
01/2016,  AN increased to 13mm.
03/2016, Middle Fossa at House with Drs. Brackmann/Schwartz/Stefan. Entire tumor removed, no facial issues, hearing preserved.
09/2021, MRI showed no regrowth.

mwatto

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Re: recently diagnosed - questions
« Reply #10 on: January 12, 2024, 03:46:08 am »
Hi I had no side effects ( I had ear pain and eye pain before treatment - seems like this was TMJ however). I do work every day on keeping inflammation low, healthy diet, clean water, quality sleep (hard) light exercise and lately also cold therapy which is swimming in sea, cold showers. Some supplements - these have included bromelain, astaxanthin, sulforaphane, SPM resolvins, melatonin, full spectrum CBD, fucoidan, PEA. I avoid sugar, eat fruit and choose colour re my diet, low carbs. Dunno thats abt it. Stress also I try avoid as that causes inflammation. Will report back after next MRI.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

DanFouratt

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Re: recently diagnosed - questions
« Reply #11 on: January 12, 2024, 08:03:42 am »
tonyc,

I had CK 4 months ago.  I returned completely to normal life with in a week. I had the procedure on Friday and tee off on Tuesday walking 18 holes of golf. I am doing all the activities I was before the the procedure.  I was eating well and exercising before the procedure so little change there.  The only effect I still experience is an occasional wobbliness.  However I am not sure if this is associated with the tumor or my heart valve which I just found out needs replacing. My first follow up MRI is scheduled for March.

Dan

Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

velardm

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Re: recently diagnosed - questions
« Reply #12 on: January 15, 2024, 03:19:42 pm »
Hello October,

Just like you, I was recently diagnosed after an MRI (found a 6mm mass within the right auditory canal) and I have an appointment with Kaiser Neuro this coming Friday. I believe it's with the same 3 doctors you have met with. My symptoms are pretty mild, I guess, but it's still life altering for me. I assume you are in a "watch and wait" status? I hope you don't me asking, how are you managing the symptoms? I don't understand why wait for the mass to grow until surgery can be done.

Thank you everyone for your support!

skier

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Re: recently diagnosed - questions
« Reply #13 on: January 16, 2024, 07:36:27 am »
Hi Velardm,
It's definitely a complex and confusing diagnosis. Treatment decisions are a burden as there is more than one path to treatment, according to the doctors/experts.

A few comments on your question, which is a very good question. (My comments are as a patient, not an MD, so weight them as such.)

Sometimes AN's do not grow at all, so most MDs want to measure growth before treating them, if they are small size at first diagnosis.

A normal growth rate is often cited at 1 mm/year, so most often symptoms don't rapidly worsen in 6 months.

A faster than normal growth rate can influence treatment choice, as radiosurgery results can be less good if there's a faster growth rate. So, growth rate can be a deciding factor in treatment choice.

If choosing surgery: The surgery options are so impactful that a patient needs time to understand the risks and rewards, and to choose a competent surgical team and prepare. Large tumors and some others can be emergencies, but most AN's are not emergencies.

Those are the main reasons that I have heard, but you should pose your very good question to the medical team. Also the Free Patient Kit has very good overview information.

All best,
Skier
« Last Edit: January 17, 2024, 08:39:04 am by skier »

DanFouratt

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Re: recently diagnosed - questions
« Reply #14 on: January 16, 2024, 07:38:11 am »
Dear Velardm,

Sorry you are hear but you will see this is a very great group.

As you can see from my signature block, I was in the wait and see approach for a while. I made the decision to get it treated after the growth was discovered Jan 2023.  I penciled in surgery for July 2023.  My son was getting married May 2023 and I did not want any complications from surgery to interfere with the wedding plans. I made the decision because it grew and I had very few issues.  I have hearing loss and tinnitus but nothing else.  However, I have read about many more issues with these tumors in others and wanted it treated.  My break came when my ENT did not pencil in the time for July.  He could get me in until September.  Which I pushed to October as I wanted to attend my God son’s wedding. 

I stopped working in June to focus on the surgery.  The delay game me time to research the various options to treat the tumor. I spoke with 4 surgeons at four different teaching hospital, 3 of 4 are very active in our community.  I spoke with 3 radio oncologist and one dean of radio oncology. I created the chart mentioned above and made the decision for radiation. I did not want the tumor to affect my life more by growing nor did I want the surgery to affect my life. From the time I made the decision to the treatment was under two weeks and the recovery was well less then a week. I will know in a few months if it worked. 

The symptoms I have are annoying but you can live with them as they do not affect your living. I do arrange people at restaurants to account for my hearing issues. My friends are now joking with me about it.

Good luck on your journey,

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled