How long between diagnosis and surgery?

[SeaQuick]

I was newly diagnosed 3/15/22 with a teardrop shaped left intracanalicular mass with a nodular component extending into
the left cerebellar pontine angle cistern measuring 1 x 1.8 x 0.9 cm. I have had a decreased sense of smell for at least 7 years, and a noticeable decrease in hearing since August.
The earliest appointment available to see the ENT is July 5th. Because I live near UCSD, I am doing all the work to get a second opinion through their center. I may end up with my second opinion before I get my initial consultation. My initial readings of other people's experiences seems to show surgery right away, I am trying to be patient and push the panic and anxiety down while I wait.
Has anybody successfully petitioned their health provider (HealthNet) to allow the surgery with a different medical group? I am contemplating whether I should be looking for a job that will provide me UCSD coverage.
I am so grateful to discover this forum!

[donjehle]

Thank you, SeaQuick, for posting your story!  And welcome to the ANA!

It would drive me crazy if the earliest appointment to see your ENT is July 5.  I am glad you are working to get a second opinion from UCSD.  Hopefully, they will respond sooner than your ENT. 

Since I have not had treatment yet, I will let the others respond on how quickly they were able to have surgery after their initial diagnosis.  I do know that some have petitioned their insurance carriers for coverage, but so far, I have not had an issue with mine, so hopefully someone can share their experience with that as well.

Best wishes on getting surgery soon!
Don

[SeaQuick]

Thank you, Don!

Just got a call rescheduling my appointment to this Thursday, which is great news, but also a bit scary, how bad was my MRI? My patient kit won't arrive in time, but I do believe I saw a "questions for your doctor" list somewhere on the website. I have been reflecting on symptoms such as "sinus headaches" that probably are related to this instead, hoping to type it all up before my appointment. Only a couple reviews for this doctor, one says he is great, the other says he is an arrogant jerk. Fingers crossed!

[MarlaB]

Was your surgery already scheduled and it moved up? I've heard of surgery being planned quickly if the tumor is in a bad place or really large, but I'm not a surgeon. I think any good surgeon would understand and support your desire for a second opinion...

[Greece Lover]

For me, it was tumor discovery in February, surgery in May.  I'm obviously not a doctor, but these tumors are rarely emergencies and your doesn't sound too big.  However, it's good to advocate for yourself and seek the care you need when you want it.  It's also really important to get someone who deals with AN a lot.  If you're close to UCSD, I would imagine they vacuum up a lot of the cases there?  And I would presume another ENT doc in the area would know of their success.  No doctor should ever be upset by a patient seeking a second opinion.

Having a list of questions is a good idea.  If you can, have someone else with you there to take notes. Good luck! The anxiety can be real. Don't ignore the mental health side of all of this. I saw a therapist for a while after my surgery and it was a huge help.

Good luck!

[donjehle]

Maybe I read that wrong, but it did not look to me like this Thursday was SeaQuick's surgery.  I thought it was the initial consultation from the ENT which is Thursday, and that it was going to take place before the second opinion from UCSD, which is good.

And yes, you can download the questions to ask your doctor at your consultation.  These can be printed off from the ANA website and taken to your consultations.

Don't put too much stock into one negative review.  Even the best products on Amazon will have a few negative reviews.  For me, it is more about how you connect with your neurosurgeon or whether you feel he is an arrogant jerk!  You want to have a lot of confidence in the one who is treating your AN, and if you do not have that confidence, then I would look elsewhere.  And Greece Lover is correct -- it is important to have a doctor who deals with ANs a lot.  You don't want someone who deals with them just a few times a year.  The best ones are taking care of ANs all the time.

Please keep us posted on how your appointment goes on Thursday!

[SeaQuick]

Thank you!

Thursday is my initial consultation with the Otolaryngologist. I had emailed my primary care doctor with a request for a referral for a second opinion. Her response was to reassure me that Dr. Littlefield is a great doctor, and she called and asked them to fit me in sooner than July 5th. I still feel like getting a second opinion for this kind of surgery should be expected. It must be hard to be right up the road from UCSD when they have a world class program, tough to compete.
Definitely getting to grips on this and waiting to tell my kids in person, and a few friends. I turned 50 yesterday, and my husband just retired, so our plans for lots of summer adventures might be dashed.
I have the questions list printed out, and am making my list of symptoms that seemed like nothing before. Specifically, last September I was sitting down and had a water rushing sound in my head for a few seconds. It was like I was standing next to a flushing water pipe.

[MarlaB]

I was diagnosed many years ago and consulted with five different treating centers. I knew I would probably not be covered by my insurance without a fight for two of them.

I heard both "don't wait, do this now" and "you can wait a few months and decide." I believe I paid out of pocket for at least two of the five opinions. It was worth every penny for the peace of mind.

Wishing you the best.

Marla B

[donjehle]

Happy Belated Birthday, SeaQuick! And congratulations to your husband on his retirement!

Marla B is wise.  When something involves your brain, you want to make sure that you are comfortable with the plan for your care.  In Marla B's case, she heard different recommendations from the different treatment centers she contacted.  And she finally had peace of mind with the one she chose.  With me, my ENT doctor and the first neurosurgeon I consulted were in perfect agreement on what I should do.  But I still do not have peace about it, so I have a second opinion lined up for this Friday.  I truly believe you will know what is best for you.

Let us know how it goes tomorrow!  We are here for you!

[kcollette]

I did the watch and wait thing for a few years to see if my tumor was growing because it was so small when it was found (~4.5 mm). Even after we decided to treat it it ended up being about nine months before I had surgery. It was only growing ½-1 mm per year and I didn’t have symptoms so I didn’t rush it.

I did try to appeal the initial denial from my HMO insurance last year but they were not budging because there’s a doctor in my state who does the same surgery. But I was set on having it done at UCSD so I switched to my company’s PPO and had it done there earlier this year.

[kathleen08]

https://houseinstitute.com/ used to do over the phone free consultations. You just needed to send them a disc with your MRI first. Does anyone know if they still do?

For me, my tumor was large and not a whole lot of choices, so they really echoed the surgeons I had spoken to locally.

[kcollette]

House still does free consultations. I had a virtual appointment with them last year.

[SeaQuick]

It has been a busy few weeks, and now I have a lot to think about. My Otolaryngologist met with me and told me that any surgery will cause me to lose my hearing, and that I should just enjoy my remaining hearing while it lasted. He was big on the Denmark study that on says only 19% of tumors actually needed active treatment in the first five years. I have a surgical consult with the surgeon within my medical group in August. He does back, neck, and brain surgery, so definitely not a specialist. I am trying to figure out how to discover how many of these surgeries they do a year before my consult in August. I am frankly a bit leary of letting someone cut into my brain who does these as a side job.
I sent my records to UCSD and had a phone consult with one of the surgeons. He is adamant that if we do surgery now, there is a 50% chance that they could save my hearing. They also have zero facial nerve damage among their surgery outcomes and do over 180 of these a year. I am so frustrated that I have world renowned surgeons 10 minutes from my house, but my primary did not refer me.
I am currently working on drafting a letter to my primary care physician requesting a full referral to UCSD. I think I will also seek out a consultation with House Institute so that I have plenty to back me up. Being told you have a 50/50 chance of keeping your hearing is pretty amazing. I am working on my balance and trying to get into better physical shape so I am ready for surgery whenever it happens.

[donjehle]

I agree with you, SeaQuick, that you don't want someone cutting in your brain who doesn't specialize in AN surgery. 

What is frustrating is that your Otolaryngologist says that for the sake of your hearing you should wait and not have surgery yet while the UCSD neurosurgeon said that you should have the surgery right away to preserve your hearing.  Those are totally opposite views.  It would be interesting to see which side House lands on.

Thanks for keeping us posted on your journey!