Tag Archives: V

The first of many decisions

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.”

Life in stereo

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.

California consult #2

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…

California consult #1

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!

Post Appointments Update

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

Comfort

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.

A punch to the gut

A punch to the gut

I’m 20 days out from a day I will never forget.  It’s also the day before two days of appointments that will hopefully provide more information regarding my next steps.

This is a version of an email I sent to family and friends after I was referred to doctors at the U of M after having an MRI back in August.

Stay tuned for more on the things God has already taught me this past month.

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I had some shocking news hit me on 9/5 and am writing to humbly ask for your prayers.

First, a little history just for context.  I’ve been struggling with hearing loss coupled with pain/pressure in my right ear for almost a year and have been seen by several different health professionals since last December.  This past spring, the ENT PA-C that I saw recommended having an MRI to rule in/out something called an acoustic neuroma.  At the time I didn’t see the need for something like that because they are relatively rare and my symptoms didn’t seem “that” bad.  Fast forward to a few weeks ago and I was fighting another sinus infection and the same pain/pressure in my right ear.  I decided to make the appointment for the MRI and added a CT scan as well (because of the sinus problem.)

The results came back the same day (8/21) – substantial sinus infection (which we treated with antibiotics) and the appearance of an acoustic neuroma.  (They did not tell me the size over the phone and I didn’t think to ask.)  The PA referred me to a specialist at the University of Minnesota and I was able to get an appointment scheduled on 9/5.  My MRI scan results were not good. I could see the acoustic neuroma right away when the doctor pulled up the image and emotions instantly overwhelmed me.  The acoustic neuroma is about 25mm, which is on the border of what they consider medium/large. We have no idea how long it has been growing, though the average growth rate is 1-2mm/year.  I’m still trying to wrap my mind around the fact that I have a tumor in my head. (Silver lining is that it’s not cancerous and “usually” slow growing.  Though care needs to be taken because as it grows, it pushes on the brain and eventually brain stem and can cause additional issues.)

Surgery is the recommended treatment due to my “young” age, good health, and the size of the tumor.  There are side effects of the surgery that brought me to tears a second time and continue to do so – complete hearing loss in my right ear is absolute if one surgical approach is taken and 2/3 likely if a different one is used.  The impact on the facial nerve is unknown until surgery is completed, though I’m told the surgeon at the U is meticulous and does everything he can to provide the “best outcome possible.” Time in the hospital can range from 3-7 days after the initial 24 hours or so in ICU.  Then it’s recovery at home – at least 6 weeks without lifting heaving items (including kids) so as to not cause cerebral spinal fluid leaks, exercises and an occasional check-in appointment, and I won’t be able to drive until my balance stabilizes (timeline for that is unknown.)  Needless to say, it was an extremely overwhelming afternoon. Thankfully, Jake was there.

As the news is still fresh and there is more information to gather, we have not made a decision on the treatment direction or timeline.  The doctor suggested we go home, talk, and call for a follow-up appointment with her and the neurosurgeon.  That second appointment at the U is now scheduled for 9/26 and I have an appointment at Mayo Clinic on 9/27 to get a second opinion on treatment recommendations.  Taking in and processing all of this information is extremely overwhelming, so I’m asking for prayers for clarity, for the right decision to be made, and for a sense of peace & courage.  I’ve also worked up the courage to pray for a miracle – complete healing without surgical intervention.

We have not shared any of this information with our kids and don’t plan to do so until we have a clear idea of treatment.  I am very open to talking about it though, please feel free to ask questions or check in.

 

Thank you in advance for your prayers!

 

Veronica

 

P.S.  If you want to know more about what an acoustic neuroma is, you can check www.anausa.org or http://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/home/ovc-20339659

 

Jesus, I trust in You

Jesus, I trust in You

I came home from picking up Shecklet #4 from preschool and someone had hung a red bag on the front door handle. (Going off a hunch, I did figure out who left me the thoughtful gift. She’s a sneaky one!)  Inside the bag was a little box containing the Divine Mercy image. I have been repeating the phrase, “Jesus, I trust in You,” these past two weeks when my nerves or mind are spinning out of control. Now I also have the visual of Jesus’ mercy on my kitchen window sill. I am grateful for the way I have been able to see God’s comfort and consoling during this time of waiting and pray it continues.

Purge and re-org

Purge and re-org

A spring cleaning bug bit me today (late in the afternoon) and I completely emptied the girls’ closets. We pulled out things they had outgrown and passed them down accordingly. The things that no longer fit Shecklet #4 are bagged and ready to be given to a younger little girl. The reorganization of their closets gives me a sense of peace. I know that sounds strange, but it’s true. (Not sure how long that peace will last, but I have it for at least the night.)

The bins on the shelf are full of sentimental items. I go through them every so often and am trying to get past the “mental” part of the sentimentality. Truth is though, it’s hard. Everything has a memory. Jake helped me with a few items tonight and I’m really grateful for his input.

Next up – the boys’ closet 😬