Tag: Veronica

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Meet my UCSD AN Surgeons

The two surgeons who I plan to have remove my tumor in January were featured in a press release from UC San Diego Health.  I’m grateful to have had the time to research my options and select a team who focuses on my type of tumor.

I’m still not thrilled with what I’ve had to choose in terms of losing my hearing, but I am working on coming to terms with it.  Accepting, maybe?  I’m sure I’ll feel differently post-surgery when reality hits me, but for now, I’m doing my best to keep my perspective focused on the positive.

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Through it

A friend of mine in my women’s group at church was recently telling me about how there have been times in her life when she has known she needs to go THROUGH something to get to the other side. There’s no going around the circumstances that have come my way or my family’s way lately. We can only go THROUGH them.

It’s been an extremely difficult week and a half. Probably one of the hardest to date. But I’ve clung to my faith (even if it was by a thread at times,) and have caught a glimpse of what my friend was talking about regarding going THROUGH our challenges. Then I saw this in the restroom at church today. Coincidence? I don’t think so.

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Date planning – moving forward

Not much has happened since my last tumor/surgery update.  I’ve more or less been waiting for 11/1 to hit so I can confirm in-network status with my insurance one more time. The email I received back from Kris a week and a half ago (Kris is the UCSD patient navigator for Dr. Friedman,) contained two January surgery date options.  The one I finally decided to move forward with is 1/23/18.  It’s a Tuesday.

I spoke with Kris on the phone again this afternoon.  She was able to give me a list of “to do’s” that I plan to start working on tomorrow:

  • Send MRI report, audiogram and MRI scans to UCSD
  • Get registered in UCSD system so I have an MR #
  • Forward MR# to Kris so she can get surgery approval from my insurance carrier
  • Set up a pre-op physical with my primary doctor within 30 days of surgery & fax reports/results to UCSD

Once my date is “official,” Jake and I can work on making plans/reservations for flights and lodging while we’re in California as well as begin to put together a plan for family and friends who have so graciously offered to help us on the home front while we’re away (and upon return.)  I know I’ve said this before – I can’t believe this is my reality.  I’m making plans to have surgery to remove a brain tumor.  It’s so surreal.

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15 years and counting!

We took the kids out for dinner to celebrate our 15th anniversary. Some may wonder why, but we love spending time with them. Maybe we’ll do a round 2 of just us going out before my birthday rolls around next month.

Jake also surprised me with a crystal elephant since it’s our crystal anniversary.

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The first of many decisions

It’s hard to think about scheduling major surgery when you really don’t feel “that” bad, and from the outside, people can’t tell that something is wrong.  Most days I carry on like nothing is the matter and forget that I have an unwelcome guest inside my head.  It probably helps that there is always plenty going on in, out, and around our house.  But nights like tonight push reality in my face.  I just clicked [send] on a pivotal email to the patient navigator for the Acoustic Neuroma Program at UCSD asking her about next steps.

So there it is…a decision.

After a month and a half of researching, going to appointments, and getting 3rd and 4th opinions, I’ve finally chosen a surgical team to evict Norman and will need to travel to San Diego to do so.  There is one important hoop to clear before formally making things “official” and that involves the lovely matter of insurance.  Both surgeons are currently in-network providers and the hospital and medical group they will bill through once they move to UCSD in November are also in-network.  That said, I don’t anticipate any issues with them being in-network come 11/1.  However, it seems I will still have a couple of weeks of slight uncertainty until I’ve confirmed the in-network status.

So perhaps this is more of an “almost decision.”

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Life in stereo

Lately I’ve been paying attention to how things sound, where the sound is coming from, and the beauty of hearing in stereo.  It hit me hard a few days ago that there will be a days/occasions/every day events prior to my surgery that will be full of “lasts.”

  • The last time I hear the music in church in my right ear.
  • The last time I’ll hear my kids call for me and hear it in my right ear.
  • The last time I will be able to sit on either side of Jake and have a conversation using both my ears to listen to what is said.

It’s hard to say how I’ll react, but I’m guessing there will be many tears shed as I grieve the loss of 1/2 of one my 5 senses.

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California consult #2

I was able to talk with the second surgeon from California this afternoon.  He told me similar information regarding saving my hearing – there is a low chance through the retrosigmoid approach but he’d be willing to try if that was my preference.  When he asked whether I have headaches and migraines, (and I responded, yes) he again mentioned the increased risk with them becoming chronic with the retro approach and it would have to be something I’d have to weigh the pros and cons.  His overall opinion was that I’d be a great candidate for translab surgery and he did not see an issue with the location of my jugular bulb.  In his experience, he said that his translab patients have been his happiest patients.

With this most recent opinion, I finally feel confident in choosing a surgical approach.  Now I plan to move on to selecting a surgical team/location and time.  Deep breath, reality continues to set in…

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California consult #1

I spoke with the first California surgeon (Dr. Friedman) yesterday afternoon (10/4.)  His experience, coupled with a balance of confidence and empathy, helped calm the anxiousness I was feeling from last week’s appointments.  He recommended the translab approach and put me at ease regarding the anatomy “challenges” that were brought up at Mayo.  He also has a care coordinator (who had an AN tumor removed 7 years ago) who guides you through the entire treatment if you choose to work with them – I’ve spoken with her twice and she followed up with me via email today just to see how I’m doing with processing everything.  Now I need to get the same documentation mailed to the 2nd doctor and wait for his call.  If he has a similar recommendation to Dr. Friedman, I will feel much more confident in making my surgical choice and can move on to figuring out a timeline for treatment.

We shared the news of my diagnosis with the kids two nights ago.  Their reactions were unique to each of them and I know they’re all processing things in their own way.  I continue to have good days and sad/mad/frustrated days – there’s no way around it, tumors suck.  I have a feeling that once I pick a doctor, location and set a date, things will really start to get “real.”  I’m bracing myself for another wave of anxiety, but continuing to pray I navigate it with ease.  I still need to be present as a wife and mom to five people who mean the world to me!

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Post Appointments Update

2nd email that I sent to those who have been praying for me following my diagnosis back in September.

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My ABR test (to evaluate the potential for saving my hearing through a retrosigmoid surgical approach) last Tuesday went fine.  Other than being loud and annoying, it was actually a little relaxing to be able to lay in the dark with my eyes closed and pray.  After the ABR test, I met with the U of M neurosurgeon and ENT surgeon.  They answered all of the questions I wanted to discuss (nothing new or earth-shattering was brought up or presented) and I left feeling relatively settled on choosing the translabyrinthine approach.

The appointment at Mayo started off with just the neurosurgeon.  We discussed my tumor, the two surgical approaches, and again how he thought the translab approach would be his recommendation due to the low chance at saving my hearing.  The ENT surgeon came in a while later and upon sitting down, said his recommendation was the retrosig approach.  I was shocked – not only because it seemed to catch the neurosurgeon just a bit off guard, but because of his reasons for his recommendation.  He said that I have a right-side dominant sigmoid sinus and a high-riding jugular bulb.  What does that mean?  Apparently, it makes the translab approach more difficult and can hinder the view of the tumor somewhat.  There is also the potential for developing a clot in the jugular bulb (albeit a very slim chance) which could lead to a stroke (again, a low chance, but still a chance.)  Going in to the appointment at Mayo I wasn’t interested in the retrosig approach for two main reasons – 1. it is more invasive, and 2. if you’re prone to headaches, the potential for them to be chronic after surgery is greater.  I have headaches almost daily (though not debilitating) and I hate the thought of living with chronic, painful ones.

I was able to keep my emotions in check until after our appointment ended.  After that, I let the tears flow as Jake and I drove home.  I’m frustrated, sad, and mad all at the same time.  I wish that the decision was clearer to me at this point. The thought of becoming single-side deaf (SSD) on the right side was hard enough for me to get comfortable with and now I have to consider a stroke risk on top of that.  I know a major lesson that God is teaching me through all of this is to trust Him completely.  Yes, the treatment choices I have to consider are life-altering, but my condition *is* treatable and I’m extremely grateful for that.  I know I will have a difficult recovery, but I’ll be given the opportunity to say “yes” to letting others help me and my family (which if you know me at all, is not easy for me to do – I’m much more comfortable being the one helping.) I’m being pushed out of my comfort zone to be vulnerable, ask for help, and allow others to support me.

So what’s next?  I plan to contact two surgeons in California who specialize in the surgical treatment of my tumor.  They review your scans and hearing tests and offer a phone consultation – for free.  I found out about them through a FB group I joined.  They are both well-respected in their field and from what I’ve read, people travel from all over the world to be treated by them.  I am praying my treatment choice will be clearer after these two consultations.

If you’ve hung on this long through my post, thank you.  And more importantly, thank you for your continued prayers and support.  I have had many more peaceful days than anxious ones and I know that continues to be because of your prayers.

With gratitude,

Veronica

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Comfort

My dad asked to meet me yesterday afternoon so we settled on Hy-Vee for lunch (which is roughly in between us.) When I arrived, he handed me an envelope along with a beautiful quilt. In the envelope was a note he wrote explaining the gift I was now holding. Tears came to my eyes as I read his words and the words of his friend who made the quilt. I am so blessed to be supported by so many people – some whom I haven’t even had the privilege of meeting yet.