Tag Archives: vestibular acoustic neuroma

Visit with Brain Neurosurgeon

First, thank you all for your prayers today. With Anna sick and other household things happening concurrently with today’s appointment, I was struggling to be positive this morning. Many prayers availed much peace, and I thank you for that.

I shook as I walked into the neurosurgeon office at Bronson. I truly have never felt more physically weak than I have the last 24 hours. I met with a steady stream of medical people before I got to meet Dr. Fabi. I was warned by the staff to NOT tell him I’ve been calling him Dr Fabi-lous in my head as I waited for this appointment. They told me they work really hard to keep him humble.

What they all did tell me is that he is a loved doctor, not just be patients, but by his staff. That he is a “good man” with a deep desire to improve the lives of others, and to be assured that being in his care and his hands and waiting for his guidance in how to proceed should be peace giving. The nurse practitioner I talked to just before Dr. Fabi told me that our faith was going to take us far, and that they wanted me relying on it. She also told me that Dr. Fabi is a man who wouldn’t be offended knowing he was prayed for. So please do pray for this man and his family! I knew I was off to a good start.

Dr. Fabi came in. He smiled, he was compassionate, he was kind. He answered every single question without a moment of rushing us. He laughed with us, and enjoyed our (sick) humor. He showed me my brain-and I do have a very normal looking one! YAHOO! Except for the golf ball between my cochlear (ear) area and the vestibular area near my brain stem. He respected that I had a nursing background but that I myself am feeling like a patient and talked to me as such.

Nothing about my condition has changed. It all remains as it did last week. I have a golf ball sized tumor, considered very large for this type of tumor, still likely benign and arising out of Schwann cells, and it has been slowly growing there quite a long time-probably a few years. It is necrosing and there is absolutely no other option but to have removal surgery ASAP. He told me that he wanted my surgery to be his only task for the day it is scheduled, that it is delicate, that it requires slow patience and steady hands, and he wants to be completely prepared for it himself. He told me that the probabilities of outcomes remain the same, EXCEPT he is skilled and wants to preserve all function that he can for me. Much depends on how much of the nerves are directly impacted by the tumor, not just the inflammation. He will likely have to leave a small number of cells in order to preserve some of my nerve functions, and I will be followed with brain MRI’s for most of my life. There is a chance it could return. But at that point I would be managed with radiation surgeries rather than this brain surgery.

One of the realities is that by my surgery date, November 29th, I will likely have ALREADY lost all of my hearing in my right ear. There is absolutely nothing that can be done to stop or save that, and there will be things to overcome related to hearing loss. BUT, he believes that at least within 6-12 months, I will have regained most of my other function back with some of those probabilities still possible problems. He just promises to do what he can to minimize them. After surgery I will be in recovery, and then spend a day or two in the neuro ICU at Bronson. I will be on a post surgery floor for a day or two after that before being discharged to home. I will do PT in the hospital and go back to Core Balance to get my strength and gait training back.

I continue to be called a picture of health. This *thing* is a blip. Nothing I did or anyone did caused this. It’s not genetic. This isn’t something my children have to consider for themselves. All parental units and offspring parties in my life are absolved of all responsibility. This is not from stress, or anxiety, or from having a bunch ‘o children, or from working and homeschooling, it’s not from using cleaners, not from plastics that store my food, and it’s not from lifestyle choices or behaviors or lack of exercise or poor food choices. In fact, all of those things or choices that I’ve already made in order to be healthy has made me a person of physical strength and by all accounts, I will heal well as a result.

I left Dr Fabi’s office really without new information, but what I did leave with is a peace that we are making the right decisions for this situation. I don’t like that I have to do this at all, but I now have a plan, and I feel like I can manage it. I will continue to be managed with medication until surgery day. Obviously, any other changes will require reporting to the ER.

I have more time at home to prepare the family. I can keep doing my regular activities of daily living as I’m able and with assistance. I’m now the proud owner of a handicap parking sticker. I will do normal surgery preparation testing. I can enjoy Thanksgiving with family and I won’t even volunteer to help prepare a single thing. 😉 I can work some of my business online as I’m able. The two shows Lydia and Peter were planning to cover for me can go without a hitch. I can homeschool from the couch. My boys can go to Haiti without worrying that I am not doing well at the hospital. Peter can finish most of the semester or at least make arrangements for his classes.

Tonight I’m going to rest. Thank you for continued prayers!

Sharing Where We Are

We have so many friends and family across the US that it is impossible to share personally with all what has been going on these past few days. Literally only days. I apologize for a blog post. I wasn’t even sure I wanted it out in blog land at all, but so many are reaching out due to the questions and faith filled posts I’ve been sharing.

Many know this already, but I have been dealing with pinched nerves since January. My dear massage therapist friend, and chiropractic care have been amazing and helpful. But, over the summer I began to notice some hearing loss, frequent vertigo episodes, and facial numbness. They both had encouraged more follow up, but as I had not seen a doctor in 10 years, I had to search around for help. It is interesting a head cold that was unlike anything I’d ever had, and a full body case of hives for these past six weeks encouraged me to get into be seen and to be persistent. I did routine blood work, and Lyme test and test for autoimmune disorders, most of which I had to insist on having done myself, and all results reflecting a person of “perfect health.”
I saw the ENT less than a month ago, and it what was deemed I had a vestibular disorder but should also see a neurologist to rule out more issues. I was in vestibular therapy for about 2 weeks, and honestly thought it was helping. Dizziness was less frequent, but still occurring, but I could at least walk a little less crooked. I went to my eye doctor for a recheck due to something my Vestibular therapy questioned, and the eye doc had only recently seen me for a routine exam. She was not alarmed by any visual changes she saw, but in me and my status, and sent me asap to her favorite neurologist, I was still waiting for an appointment for the neurology appointment referred to by the ENT and it had already been 3 weeks. Within 1.5 business days, I had a neurology consult where I failed several exams, and he ordered an urgent MRI, rather than the as late as January MRI the “scheduler” at the ENT could offer.
After the MRI, I knew there was an unusual finding, but I was told just to follow up on Monday. However my neurologist called within 2 hours of us being home and instructed me to immediately go to the ER due to a 1.5 inch mass found near my brainstem, and possibly life threatening. I needed a neurosurgery consult ASAP. I have been diagnosed with a less common, but likely benign, large schwannoma acoustic neuroma. I am past “wait and watch” stage, and onto “tumor removal” stage.
For the time being, I am stable at home and on decadron to shrink inflammation in tissues. I’m not in love with ever being on any medication, and this is messing with my head (pardon the pun). I have a list of scary things to watch for, including hydrocephalus, and that I pray we don’t need to address. We’re developing lists, and ticking through them to be sure my affairs are in order, and that my home is somewhat managed and the family is cared for. I am still being told I am a picture of health, and that I am well prepared physically to handle the outcomes, that I have well taken care of myself, and did nothing to cause this, and nothing could have been done to prevent it.
I have a list of probabilities for outcome, and this makes things quite uncertain. After tumor removal surgery, I likely will be having radiation. I will likely always have vertigo and gait issues, I will likely have complete hearing loss in my right ear because a tail of the tumor is in the vestibular nerve itself, and I likely will always have facial numbness and pain. I may never drive again (I gave up my keys on October 1). I may have facial droop. But we also see God’s hand in this, and that He has been preparing us for an event like this.
My understanding is that the neurosurgeon I will be having do my surgery is a well known, best person for this job. Except he’s on vacation and we’re praying he is resting, and not scaling Mt Everest. We’re praying for his steady hands, and his own rested head. Surgery could be as soon as one week from today without complications arising before then.
Pray for my husband and children, please. We as a family are doing as well as can be expected. And while we’re a faith filled, Christ following family, this is frightening. We are appropriately crying, holding each other, laughing, joking, working, playing, praising, praying, rinse and repeat, many times throughout the day.
Thank you our church family, for rallying in a moment of desperate need and outright feelings of despair. I did wonder if I was saying good bye to them as we left for the hospital, and making last minute phone calls to family in New England as well. Thank you for staying with our children, feeding them, cleaning with them, distracting them, playing games and laughing with them. Thank you for praying with them. By their own accounts, it was what they needed.
Our normal is likely going to change, and we don’t really know what that looks like, and at this moment, and not what we expected. Our son Jonathan and daughter in law Kelsey are in New England, and Peter and I are acutely aware of how hard it is to be so far away and feel helpless as you wait for information, without the benefit of the appropriately crying, holding each other, laughing, joking, working, playing, praising, praying, rinse and repeat, many times throughout the day. We do know that they have a support system in place, and that is a comfort. But still….
As we think of ways we could use help, we may very well just put it on Facebook. We will not refuse offers. We know this is not a “quick 6 week fix” and could take as much as a year to recover from, if not longer. We welcome being put on prayer lists everywhere!
Thank you for grace when we’re not in our best moment, for sustaining us and praying with and for us. We love you.
PS: Also, please note: We believe a persistent unrelated case of six weeks of hives, a massage therapist, chiropractor, and diligent eye doctor have potentially saved my life. When is the last time you thanked God for uncontrollable itching that stays in the forefront of your mind?