Hello again to all of my fellow Menierians, I thought it was appropriate to come back here, exactly five years after my vestibular neurectomy and give you an update. Some of you may remember how bad I was prior to my surgery. I couldn’t walk upright, sit upright, or sleep lying flat. I had vertigo attacks every other day, was on Valium, Dyazide, meclizine, and all sorts of other meds that didn’t work. I tried JOH’s regimen, limited my sodium, and took very good care of myself. Still, nothing was working, and I was severely impaired—anything could set me off. Something as simple as glancing at a display of Pop Tarts at the grocery store would send me spinning. Even on the days where I didn’t have attacks, I lived in constant brain fog, unable to walk without holding on to something, and unable to venture out of the house alone for fear I’d need assistance in public. I wondered every day how I was going to live out the rest of my life like this. I was 23 years old. I turned to you. Here, I educated myself about my options. Browsing, learning, absorbing everything I could about the disease that was crippling me—all the while knowing that, if I didn’t get this under control, I would not have much of a future. At the same time, I was trying desperately to graduate from college with a degree allowing me to teach high school. I was so close. Just one semester left. I needed you. Besides feeding me with as much knowledge as I could handle, you uplifted my spirits, reminding me to trust in God, and to keep going. I felt better as I encouraged others to do the same. Somehow, the members here manage to endure by, not dwelling so much on their own personal struggles, but by encouraging others in their turmoil to keep trying, keep living, keep fighting. I have not read a hopeless word from anyone here directed toward another member. I trust that in five years that has not changed. I trusted you. After months of reading what worked and what didn’t, you had equipped me to visit my neurotologist with an idea of what I wanted to do. I actually hobbled into his big fancy office, assisted by my parents, thinking that I would elect to try the endolymphatic shunt surgery. After having him lay out all of the surgical options—the shunt, the gent injections, the laby, and the VNS—it became pretty clear what I needed to do. I decided that I was only going to have surgery once. I determined not to go through the success/failure rollercoaster that so many on here had experienced with other treatments, and to ask for the VNS. You should have seen the look on my mother’s face—worry doesn’t even begin to describe it! She would spend the next several months watching me recover, wondering at every stumble whether I had made the right call, only to admit at about the year mark that it was, in fact, worth it. I left the Doc’s office feeling like I was finally starting to fight back. I had the big guns on my side, now! It was six weeks before I was set to go under the knife. I spent those weeks getting my life in order, attending to insurance questions, and arranging school so that I might be able to take my final exams two weeks early. It was only the night before my surgery when the reality of what was going to happen to me sunk in. This was either going to work, or it wasn’t. Something could go horribly wrong on that operating table and I could wind up an even bigger vegetable than I already was. Then again, everything could go very right, and I could get my life back again. Oh, I wanted that so badly. I went to bed that night knowing that it was all in God’s hands. The surgery and time in the hospital went well. I actually wrote about it on the boards here shortly afterwards. Ah, the Percocet was running through my veins there! It’s pretty evident! Haha! My recovery was pretty long. I had to learn to balance my electrolytes to help support my only good nerve. I had to relearn everything. I spent several months relearning the mystery of how women walk in 5” heels—it wasn’t until a year later that I was wearing some pretty fabulous shoes as the maid of honor in my sister’s wedding. I relearned how to dance and pirouette. I got a job teaching inner-city high school History in Detroit. While I had some “off-days,” probably due to the stress of working there more than anything else, they NEVER knew I was deaf, until I left for another job three years later. I had assimilated back into the healthy population! Just last year, I relearned how to ride a bike for long distances. (It wasn’t so much the balance while on it, but the Jell-O legs when getting off and trying to walk afterward that my mind had to get used to again.) And just last month I relearned how to ice skate! I still get a little “off” if I’m still out and about in the wee hours of the morning. I don’t drink, I don’t take antihistamines, and I don’t go to the movies. I try to get a solid 8 hours of sleep per night. I take care of myself. Three years ago, I also got baptized and began walking closer with the Lord. He used so many moments in my recovery to draw me closer to him. Whether it was taking my daily walks outside, looking up at the bright blue sky dotted with fluffy clouds, and marveling at how the Creator of all this and more loved me enough to give me a second chance in this life and the next, or just the ever-growing and compelling feeling in my heart of “He’s given you this gift—you need to honor Him with it.” With so many moments, it’s clear that He had planned all of this for me. “But he knows the way that I take; when he has tested me, I will come forth as gold.” I don’t know what He has in store for you, but He does. I just want to thank you for all of the advice, encouragement, prayers, and, most of all, hope. I wouldn’t have been able to go through everything that I did without you. I’d also like to encourage anyone who has thought about undergoing the VNS to please talk to your doctors about it. It sounds so scary, but sometimes the biggest risks have the greatest rewards. This could be your opportunity. Think about it some more. Pray about it. If you want to talk with me more about anything I’ve mentioned, whether it’s the VNS, the recovery, or even my faith in Christ, I’m always available via PM. Thank you SO very much, Menieres.org. You are all truly lovely people, and I will continue to move forward in life with you in my heart, praying for you constantly. Love, Jenny Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything…Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. James 1:2-4,12
You are awesome and strong!! And your story just brought tears to my eyes, literally at my desk crying. Good luck to you and I hope everything continues to go well!! Inspiring to say the least
Wow great story, I've said this to many people and you are one who can truly "get it", there is nothing better in the whole wide world for a MM patient to wake up every morning knowing that today "I'm not going to have a vertigo attack" I had my VNS in September 1999, in 5 months I will celebrate 15 years of Vertigo free life, 15 years! The same number of years I suffered as I had my first MM attack in 1984. A milestone I'm looking forward to seeing in my rear view mirror. May you be blessed with many many years of vertigo free living! And I do mean living, as the VNS gave me my life back and now you know what it's like to have yours back!
Good post, thanks. I do have a question though, you said " I don’t take antihistamines". Could you please explain why not? I am very glad for you, but I sure wouldn't want your Detroit job, I think I would call in sick Thank you!
Congrats Jenny on your success. I remember your posts about your VNS experience as I was preparing for shunt surgery at the same time. I'm glad it has worked for you. You should stop in more often to share your experience as I remember how elegant and well written your posts were, very informative for someone who was contemplating the surgery.
Hi Jenny I do remember how you suffered. I so happy for you. For me its been 12 years since my VNS and I feel like am cured. I wish more people on this site would go for the cure like we did. Joan ny
