After a lot of research and prayer, I underwent MVD surgery on April 24. It has been glorious to live pain free and medication free. One thing I noticed though as I did my research, was the difficulty in finding a positive experience from anyone who had one. I realized that most people did not return to tell their story. They went on with their life. So I was adament to post my story here, in hopes that it might help someone with questions and anxieties see that positive stories do exist. I had both classic and atypical TN. I didn't have a clear compression on any MRI. But I had an amazing surgeon. Here's my story.
April 23 - Today my husband and I got up before dawn and drove the 6 hours to Durham, North Carolina to Duke University. We arrived at the Clinic a little before noon. I had my pre-op appointment at 2 pm. The staff was wonderful. They asked about my medical history and then took some blood. All-in-all it took about an hour. We checked into our hotel and prepared for an early morning.
April 24 - I arrived early to registration and signed all the paperwork. They called me back right away and i changed into a gown and climbed into bed. Soon a couple nurses came in and started 2 IV's and started attaching wires everywhere. I had to give a urine sample to make sure that I wasn't pregnant. Then the surgeon and the resident came in and spoke with us a bit and marked my head with the correct side to operate on with a magic marker. Then they put happy juice in my IV and I drifted off to dreamland.
I awoke 3 hours later in ICU. My husband was there and he told me that the surgery had been a success. Most of the rest of the day I spent sleeping with my head wrapped and sipping ginger ale. I started experiencing alot of double vision. That afternoon, the surgeon came by my bed and told me what he found. I didnt' have a clear compression on my MRI so I wasn't sure what to expect. He told me that not only did I have a compression, but I actually had three. Two arteries were scrunching it into an "s" shape and a vein had grown through it. He cauterized and cut out the vein and then tacked the arteries up and away from the nerve. Then, he wrapped the nerve in teflon to protect it from anything else that might bump up against it while healing. It wasn't until then that I remembered to check for face pain. I pushed on my trigger points and....nothing. The pain was gone.
Next day - I spent most of the time sleeping still. I had my catheter removed and was able to get up and walk to the bathroom. I nearly fell and the nurses immediately put me on fall precaution. I couldn't believe that I was so dizzy and weak. I had a migraine this afternoon and they started putting heat packs on my eyes along with some pretty great drugs. The nurses told me that the regular rooms were all full so I had to stay another night in ICU. I didn't care as long as I had access to the pain meds! Still spent alot of time sleeping. The nurses were so wonderful. The set me up with an eye patch so the double vision didn't make my headaches worse. As the day wore on, the nurses were slowly and gradually unhooking me from the myriad of machines I was hooked to. Other than the headaches and dizzyness, I was just so happy to be pain free!
2 days after surgery - The nurses came in this morning and started my discharge papers. I still can't walk on my own and that scares me a bit. We discharge and drive back to the hotel. We decide to stay for a few more days in case there are problems or infection. On our way back to the hotel, we stop and grab lunch at Mcdonalds and a quick stop at Walgreens to pick up prescriptions. I slept for the rest of the day. That evening, I took a shower. It was lovely. My stitches were under the skin and the skin was itself glued so I could shower and wash my hair right away. I felt SO much better after that shower.
3 days after - I felt so much better that I decide to get up and go to the bathroom on my own....I ended up falling on my butt. Decided that I was not as strong as I thought I was. Spent the day watching TV and sleeping. Headaches got worse.
6 days after - Since I haven't had any complications or signs of infection, we decide to undertake the 6 hour drive back home. Spent most of that time sleeping on an air mattress in the back of our SUV. I couldn't wait to get home and see my kids. Once I was home, I quickly realized that how very weak I was. Spent the day on the couch. Starting to feel yucky.
7 days out - I woke up hallucinating and acting like I was tripping out. Couldn't be still and felt like bugs were in my blood. Took me all morning to shake it. Feel like I'm getting worse, not better.
9 days out - spoke with Resident on call. The issues with hallucinating and creepy crawlies has continued every morning. It turns out I was taking my Gabapentin at the same time as Oxycodone and it was not comboing well with me. Now I have to change my whole pill schedule. He felt my dizzyness and nausea was from inflammation in the inner ear which sometimes occurs after this kind of surgery. He put me back on a regiment of steroids. He also told me to start weaning off my Gabapentin 1 pill every 2 days. That part makes me very happy.
11 days out - Still sleeping every moment I can. Starting to get depressed. I thought I would be stronger and better by now. So tired of hurting. I went to visit my general practitioner and I have a severe urinary tract infection from the stupid catheter. More pills, more pain.
12 days out - Took my last Gabapentin!! Medication free! Woo hoo!!
14 days - Will I ever be healthy again?? I woke up this morning with pain in my face again. It is a burning throb in my temple and cheek bone. I put in a call to the surgeon again. Turns out it's pretty normal. After being on nerve-deadening pills for so long that my nerves are just waking up. Pain lasted a day and ahalf.
21 days - I decided that I am ready to join the world again. Doing laundry on my own and played with the kids. Even drove the family to Chili's for dinner. First time driving in more than 3 months! I am starting to feel great!! I still have occasional headaches but it can be controlled with Advil. The worse thing I deal with now is insomnia. Several nights spent staring at the ceiling until dawn. But still no pain!
As for now, that's my experience. My recovery has definitely been worse than the surgery, but we take what's thrown at us and learn to survive with it. I am still 150% better than I was before the surgery and I would do it all again. I have to see the surgeon for post-op in 2 weeks to be released back into the world, but as of now, my life has already started to prove itself better than before TN attacked. I hope this gives hope to anyone thinking of maybe going through with MVD surgery. Do your research, know your surgeon, and go for it. I didn't realize how much TN and the meds halted my way of life until I was freed from them. I enjoy things more now, and I am so grateful for not fearing things like wind. There is hope. If you have any questions and would like to know my experience on the matter, feel free to message me!
Here are some photos of my scar...the first one is when I left the hospital, the second at 10 days out from surgery. The third is me so very happy to leave the hospital. They were removing the last of the IV's for me to be discharged. Gotta love the eye patch I'm sportin!! LOL!
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