Last Thursday, marked my sixth month post MVD! I am doing well!! I continue to be med free and generally pain free. To me MVD represents a perfect imperfection. Overwheliming the surgery was a success. I have had NO incidents of excruciating fall to the floor, gut-wrenching pain since the day I came out of surgery. It is a perfect blessing. And yes it is and was the ultimate answer to my prayers. I vividly remember the days I sat praying for God to just end the pain. He did. To me it is ranks right up there with a God sent miracle. Powerful and Perfect.
In six months time I have lived a lifetime of small dreams. I am doing things I once thought would be impossible. Physically, I am doing well, albeit, some cardiac problems. Every time I brush my teeth, or comb my hair or take a shower in the morning, I remember the promise I made, to continue to reach out to others who suffer from TN. What is most profound to me is that many people assume that once the pain is gone , we not longer live with TN. HA! If they only knew. The residual emotional and mental effects of TN continue. One aspect that hit me the hardest is my self-esteem. Once very confident and able to multi-task with ease, I find myself like an aged juggler…I used to throw up 16 balls at one time and catch them ALL. Now, I miss a couple on a regular basis. I am pretty convinced, that no matter what the neurosurgeons say, MVD, takes it toll on one’s thinking. Still , I have no regrets about the surgery.
So what I have now is some annoying numbness on the L side of my face…imperfect…no pain…perfect
Because of the TN I cut off my hair…My hair is short…imperfect…it is growing back thick and healthy…perfect.
I lost years of my with my friends and family due to TN…imperfect…I am enjoying time with my friends and family and we are building new life…perfect
Without the painful veil of TN, I am finding more joy and purpose in my life. It is amazing and it is a perfect imperfection. Life is change and change is Life. I know what I have. In the knowing, I will never again fear the this affliction will kill me or my spirit. Even if comes back, I still know what I have. Anais Nin once said that perfection is static and that her life was progress in full motion. I feel the same. I will always live with TN. In a perfect world it will never come back, but life is movement and so if it does…I will continue to live my life as masterpiece in progress… grace will always move in right into the place called hope! Thank you to each of you who have supported me and offered hope to me. You touched my spirit with and indelible kiss to my soul. You are a vital and a necessary part of my life. I pray for healing and comfort for all.
Peace, blessings, abundant love and healing sent to all.
May you always see the tenderness and beauty of your Life,
As always, your writing is art! I like to think you’d write a book about your experiences, as whenever I read one of your thoughtful posts - I find it a positive and emotive moment in my day and I enjoy re-reading through your words! You radiate a positive and most definitely, graceful soul! Thank You!
I am extremely happy that you are able to make the most out of your imperfect perfection - I love that phrase too, by the way With my reduced medications at the moment, I too am beginning to see more joy enter my life. In a weird way, having reduced the meds I’m taking has also reduced my pain. This confuses me and my Doctors no end, however I intend to make the most of any and all painfree moments I gain.
With the advent of Spring on it’s way - the beautiful warmer days starting here now in Australia, I find my mood and spirit lifted after what was becoming a rather depressing Winter season. Spring gives me freedoms that allow me to participate even a little more in my old lifestyle - getting outdoors, enjoying the sun on my face. Lifestyle changes remain in place however, it’s taken me years to learn to accept the modifications I’ve had to make to be able to live as much of a pain free life as possible. But I think I’m much more accepting now than I was even a week ago. Today, a huge boost again thanks to an unseasonally warm day for Winter, as it was HOT & humid!
But I would never have reached the point I’m at now, without the calming, encouraging, thoughtful, kind, sincere, supportive friends that I’ve gained through Living With TN! So to all of those, and that includes you Aleshia! I thank you all.
Hey, next week I may lose the positivity I’m currently feeling, or even lose it tomorrow - but today / tonight, I’m feeling pretty good - I’ve had just one attack today instead of dozens and it lasted only 30 minutes, not long enough to ruin my good mood!
Be Well Aleshia and I hope we continue to keep in touch!
Love Kerry (Ko) xx
i to had the mvd. i am only on 21/2 weeks after surgery. i too was left with the half of my face in full numbness. the dr said he gives me about 4-6 mths and hopefully it will come back. i have trouble eating,tasting and have to put drops in my eyes always all day due to the fact i cant feel if something is in it. you say you are 6 mths and still have the numbness? how bad is yours? i guess all we have to hang on to is hope that it goes away but atleast the pain is gone which was the worst pain i have ever felt. Living with tn takes special people to handle it and the support system around us. looking forward to talking to you debbie
The numbness that I experience now is very mild. My nose, tongue and upper lip are slowly improving. I notice the numbness the most when I am overly tired or excessively stressed out.It was worse around the 3 month marker ans is markedly improved. I had difficulty with taste and feeling too. I also had some residual pain, due to the fact that I also have occipital neuralgia. My surgery revealed significant compressions and there was a lot of manipulation of the nerve.
I too was and am grateful for relief from the pain. In hindsight, I still shudder when I think about how long I suffered with active with TN and how excruciatingly painful it became. By far it was the worst pain I have ever experienced. grrrrr… For me I simply accept it as what it is…it is…! The numbness is small price to pay for pain relief. I’ve said so many times in my post,but I’ll say it again just for the record. We are each so unique and individual. Our pain and healing are similar but we each see it through our own lens. Keep the faith! Monitor your progress and don’t let anyone else tell you what you do and don’t feel. It is your body and you know it better than anyone else. The doctors are there for you . Be you own best advocate.!! Keep coming back to this group. It is an excellent source of knowledge, inspiration and support for you and yours.
Peace and tenderness blessings sent your way
Thank you for posting this, I am heading for MVD on the 17th of Sept. (was orig. sched. for the 24th). I am a nervous ball of mixed energy. excited hopeful scared. darn near willing to trade anything. the nasty dose of topamax i am on is making me hallucinogenic (alice in wonderland feeling) right now as we speak. i can’t live on these meds anymore - the doses are too toxic for my system and don’t even keep the pain away everyday. I am really really happy to read your post. thank you for the uplifting read.