This is the second time I have written this. I guess I can add it to my other crazy things like car keys in the refrigerator and television remote in my pocketbook. Tough six months. The failed Gamma Knife and three nerve blocks have moved me to make this decision. Three consults with all three concluding that two blood vessels are doing something around the nerve. I am having the MVD done in the Thomas Jefferson Neuroscience Hospital in Philadelphia. The Gamma left me with R/S facial numbness. I cannot deal with the teeth pain. It feels like someone has hooked up an electrical wire to all of my teeth on the right side and they are taking turns shocking me. To do nothing is literally adding insult to injury. The meds are making me think strange things that really have me uncomfortable. I have nightmares to best the band. I yell out in my sleep and wake up my husband with the most outlandish stories. Two trips to the ER for pain management, like I have never experienced before. I keep wondering how did it fall apart so fast?
I need help. I am having the procedure done this Tuesday. What I would love to do is have a large Marguerita and run down the beach and into the ocean with wild abandon. I see misspells here but I am moving on. I am so restless and nervous that I vacuumed my bathtub and gave my granddaughters Guinea Pig a wash and blow dry. Any suggestions as to how I can settle down? The Xanex is doing nothing. My heart is beating outside my body and I do not want to talk to one more person. I know it’s mean but I can’t. If one more person asks me if I’m scared, I will not be responsible for what happens next. The beach thing is looking good, if the rip currents weren’t so bad.
Just say WTH, to the rip currents and dive on in. I am 19 days away from my MVD and so far so good but I can feel the fear hidding around the corner. I am what you might call a control person so to allow someone to slice and drill into my head goes against every fiber of my being. My thoughts and prayers are with you, bring something to the hsopital you can hold onto and know that you will come out the other end better than when you went in.
Thank you for the well wishes and prayers. I not unlike yourself will need to be peeled off the ceiling. We will get through it. Sometimes in my drug induced thoughts I think we are all beings from an alien planet infused into this world centuries ago. Our one distinctive genetic marker is our defective Trigeminal Nerve. See I told you the meds have pushed me way too far. Will post after to let you know what a piece of cake it was. Best wishes and it’s a given prayers for you and all who suffer.
Lou...first off good luck on Tuesday my prayers are with you. Its perfectly natural to be nervous the anticipation and wait is tough to deal with but focus on the outcome of being pain free. I had my MVD done 31 yrs ago at Temple after 8 yrs of pain and tegretol. Have been pain free and med free from the moment I woke up from surgery. I had the same thing you have with two vessels on the nerve but also had an artery pulsating on the nerve. Try and stay distracted by reading or something to keep your mind busy. Tuesday will be here before you know it and I am sure you will do just great. The recovery really isnt all that bad at all, not like a stomach surgery where muscles have to heal;. I am 64 yrs old now and if I had to do it over I would do it without hesitation. Here is to a pain free life after Tuesday!!!
Lou...first off good luck on Tuesday my prayers are with you. Its perfectly natural to be nervous the anticipation and wait is tough to deal with but focus on the outcome of being pain free. I had my MVD done 31 yrs ago at Temple after 8 yrs of pain and tegretol. Have been pain free and med free from the moment I woke up from surgery. I had the same thing you have with two vessels on the nerve but also had an artery pulsating on the nerve. Try and stay distracted by reading or something to keep your mind busy. Tuesday will be here before you know it and I am sure you will do just great. The recovery really isnt all that bad at all, not like a stomach surgery where muscles have to heal;. I am 64 yrs old now and if I had to do it over I would do it without hesitation. Here is to a pain free life after Tuesday!!!
Thank you everybody. Love your precious souls. KC I have no words for you. Just came back from pre-admission. Low sodium due to the oxcarbazepine. Have to go off it until after the surgery. Bless you all.
Maybe the Guinea Pig will be ready for another spa treatment before Tuesday... LOL! I'm hoping to have an MVD soon, but no where near time to start getting anxious. Best of luck to you!!
Lou & Houstonman,
I can tell you only that the anxiety pre-MVD and the fear are very real and very normal…I know that the day before my surgery after a consult with my NS I was vibrating with both. I could feel my fear and anxiety shake me up from the inside out…my body was literally shaking the night before.
The morning of my surgery a wave of calm washed over me, all that fear and anxiousness disappeared. I knew this was the right & best choice for me. Acceptance brought calm.
Lou, the weeks prior to my surgery, well intentioned friends & family were calling, emailing visiting etc but I too although grateful, was very tired of talking about it all. With each my fear and anxiety rose…
I meditated, prayed, listened to calming music, and was selective in when I answered the phone to minimize the stress of it all. I distracted myself with movies, books and tried desperately not to “think” about it all too much…
My pain was overwhelming and worsening so my focus was mainly on getting through each moment, and counting down the days until my MVD. Remind yourself to think positively and trust that all will be well.
Wishing you both success with your MVDs ! I’ll be sending positive vibes your way!
((Hugs)) Mimi
Thank you Mimi. Drs. feel that what I am experiencing is not AD but a Gamma that failed. Both feel an MVD would help, as I do have pain free periods even though they are getting closer like labor pains. I am such a sceptic at this point. I have to cold turkey off the Oxcarbemezapine as it produced dangerously low sodium levels. It’s only for or three days. Easy to do if you don’t have TN, right? I was on it for 2 and a half months with no monitoring. The cardiologist in Philly for the per admission testing caught it. Thank God. It is 126. Lots of GatorAde and tuna. I stopped it yesterday and although my pain is getting ridiculous the racing heart and shakiness is subsiding. I have the Neurontin, Xanex ,oxy, meditation tapes, violin and the US Open. I still did my best on Tegretol. Love that drug. I know your journey has been wrought with falling down and getting back up. I remind myself of that And tell myself that Mimi did it and I can too. My husband will sometimes ask how you are and I pray that when it’s quiet here times are good,but we both know what this disease does. I am waiting for him to pack his bags and head for the hills. This disease reaches out and chokes everybody that loves us. So thank you for taking the time. I will whisper your name as I go in. A gentle kiss to your hand my brave friend.
Hi Lou, thank you…I’ve had to distance myself from here for awhile ( and I’ve missed actively participating) but it was best for me. I needed a break from all things TN. It’s been a rough year…trying several new meds weaning off others only to find nothing is really working…takes a lot out of a person. Had a bout of depression as a result Which found me isolating myself. I’ve come out the other side now and am moving forward with renewed strength of spirit.
My MVD still made my TN better than it was before and for that I’m very grateful. I try not to call it failed MVD, because it didn’t fail me, it took my pain from constant 24/7 high end debilitating pain and increasing to a few notches down. I now have hours with minimal to no pain some days and am not giving up hope for better…
I just needed time away to work through it all emotionally, so I’m feeling better in that department once again. Oh it’s a constant struggle…my insurance company made me file for government disability which came as a shock initially and made me face facts that I won’t be returning to my work anytime soon…that was a hard pill to swallow.
In any event that’s my update, wish I could say my time away was because I was well…but it is what it is.
My best to you Lou and your husband…(( hugs )) from me! xx