Tag: AN warrior

Uncategorized /

Post Appointments Update

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Uncategorized /

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.

Uncategorized /

Meet Norman

Here is what has been growing inside my head for an unknown amount of time.  If you use the average growth rate of 1 to 2 mm/year, it is possible that Norman, my acoustic neuroma, has been present for 12-24 years.  Looking at these pictures still makes me shake my head in disbelief.

Uncategorized /

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Uncategorized /

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.