The verdict is in. The diagnosis slapped on the table, and then a pat on the butt as they escort you out of the office, all the while pointing to the Exit sign.
I was there to review my 4D Ultrasound results and schedule a possible MVD and procedure to rake the nerves. I was not prepared for the diagnosis of AD.
5 years ago my TN1 / 2 started. I had numerous radio frequency ablation procedures, GammaKnife, and MVD in 2010. Recently in July I awoke during a family camping trip in excruciating pain…the headache lasted days and what remained was a horrific pain as all discribe here all throughout the numb areas of my face. It has since spread to scalp, forehead, eye, nose, cheek, ear. It’s maddening.
And now I have no hope, no cure. My attempts at curing this monster was a known risk and I lost. I can’t work in my profession due to vertigo and pain medicine . I’m going to attempt college and see if I can retain info. But other than that. I’m chained to pain meds…feeling the lowest I’ve felt since this thing gripped me 5 years ago and beginning to earn for answers
Hi Jillian,
I read your words and not only empathize with you, I can’t help but sympathize with you. You will get relief one way or another, because you are a fighter. Unimaginable pain; my heart goes out to you.
You deserve some answers wherever you can get them right now. You deserve to have hope every day, every moment to bouy your spirit. Hugs to you, millions of starry, hope-filled, beautiful, comforting hugs, Laurel
Thank you Laurel. Last night was tough. I waffle between. “Oh my Gosh I dont have to have MVD” and " oh my Gosh…there is no cure." I will buck myself back up and continue the search for the cocktail of meds and alt treatment that works for me. But it is quite an isolating feeling these days… can’t work, or think or function some days. I feel like a lazy slug sometimes when my body says STOP!
Hi Jillian, you just have to go with the lazy slug feeling when your body says STOP. That’s how it is with me too. Otherwise, my pain increases and besides, the drugs make me feel like I don’t want to do anything else but sit and blah out. I hate that feeling, but figured out a way to enjoy it. Television, well, Metflix and Amazon Prime. I don’t have cable TV, so no commercials suit me just fine. I am an expert binge episode watcher. I love crime shows and home redecorating and refurbishing shows.
Today my husband and I are heading to Seattle. Tomorrow I am getting stereotactic radiosurgery. My hope is to reduce the level of medication I have to be on. For years I have put off doing anything further to alleviate the pain, but finally I am going to try this. I had the MVD, but just this procedure further to see if it will help. I know the risks. Your story scares the wits out of me, but I have to try this anyway. I’ll let you know how it goes.
I HAVE THE SAME SITUATION ! I HAD RFL IN JANUARY AND NOW I HAVE AD. CONSTANT HEADACHE AND TOTAL NUMBNESS ALL RIGHT SIDE OF FACE AND HEAD AND ALL MY LIP. I HAVE AN ACOUSTIC NEUROMA PRESSING ON MY TN AND DEAF IN RT EAR AND NOW IT IS NUMB. WISH I HAD NOT HAD IT ! I HAD LINAC SCALPEL 13 YEARS AGO, TUMOR HAS NOT GROWN OR SHRUNK. I AM ON 3600 MG OF GABAP.,, TRILEPTIL, HYDRO COD. WHICH DOES NOT HELP PAIN BUT GIVES ME BOOST TO GET OUT OF BED!
As the sailor said " Ain't that a hole in the boat." We are all putting patchs and band-aids as the hole gets bigger. TN started about 13 yrs ago on left side. Ijections did noting, radio frequency ablation hurt and made me cry but did nothing for the pain. MVD in 2007 has had a little success, but I had to have cranialplasty in 2011 to repair the lousy closure of MVD and also had Ganglianectomy of the Occipital Nerve - that helped for about a yr- now it is back. In the middle I had Gamma Knife on right side. Some relief. Of course I had to be in the 10% that are bilateral. If anyone tells you it is not simultanious- don't believe it. I can be going off on both sides at the same time. I also am stage 3 kidney failure, and have had 4 TIA in 3 yrs. 2 in the last 2 months. The battle of juggling meds that help the TN and ON but do not hurt my Kidneys is a real act. I should take it on the road. Stop the pain but don't hurt the kidneys or cause another TIA or the big Stroke. But I am in it for the fight. They are always coming out with new ideas and meds. I will not have another surgery even if the boat is sinking. We are all in this together and help each other as we go through this journey. We understand each others pain and frustration. But we are not alone.. We have the love and concern for each other. I take 400 mg Vimpat and 30 mg Morphine, plus 1 baby asprin, 75 mg Clopidogrel Sulfate ( just started this one. A B-12 every month and 4000 mg Vitamin D. I try to limit the morphine-but when it gets over whelming I take one to gain my control. This is a matter of my will over unbearable pain. I refuse to lose. I am 67 and plan on sticking around for awhile. Keep your sense of humor. Crying causes pain-so I save it up and have one big bawl for everything. I cry like the main line is busted. I keep my faith . Some one asked me if I ever asked "Why me?" my answer is Why not me? I am stubborn Irish and I will not let this terrible condition beat me. Keep putting one foot in front of the other. What I can do -I do. I try for more. What is beyond me-forget it. Remember you are loved. And everyone with this dread condition understands and feels your pain. We really do understand. Keep the faith and your chin up. My best wishes to you. Colleen
BLESS you ! You have really been thru it ! You are an example to me and I am sure many others. I pray for you- Colleen !
galli said:
As the sailor said " Ain't that a hole in the boat." We are all putting patchs and band-aids as the hole gets bigger. TN started about 13 yrs ago on left side. Ijections did noting, radio frequency ablation hurt and made me cry but did nothing for the pain. MVD in 2007 has had a little success, but I had to have cranialplasty in 2011 to repair the lousy closure of MVD and also had Ganglianectomy of the Occipital Nerve - that helped for about a yr- now it is back. In the middle I had Gamma Knife on right side. Some relief. Of course I had to be in the 10% that are bilateral. If anyone tells you it is not simultanious- don't believe it. I can be going off on both sides at the same time. I also am stage 3 kidney failure, and have had 4 TIA in 3 yrs. 2 in the last 2 months. The battle of juggling meds that help the TN and ON but do not hurt my Kidneys is a real act. I should take it on the road. Stop the pain but don't hurt the kidneys or cause another TIA or the big Stroke. But I am in it for the fight. They are always coming out with new ideas and meds. I will not have another surgery even if the boat is sinking. We are all in this together and help each other as we go through this journey. We understand each others pain and frustration. But we are not alone.. We have the love and concern for each other. I take 400 mg Vimpat and 30 mg Morphine, plus 1 baby asprin, 75 mg Clopidogrel Sulfate ( just started this one. A B-12 every month and 4000 mg Vitamin D. I try to limit the morphine-but when it gets over whelming I take one to gain my control. This is a matter of my will over unbearable pain. I refuse to lose. I am 67 and plan on sticking around for awhile. Keep your sense of humor. Crying causes pain-so I save it up and have one big bawl for everything. I cry like the main line is busted. I keep my faith . Some one asked me if I ever asked "Why me?" my answer is Why not me? I am stubborn Irish and I will not let this terrible condition beat me. Keep putting one foot in front of the other. What I can do -I do. I try for more. What is beyond me-forget it. Remember you are loved. And everyone with this dread condition understands and feels your pain. We really do understand. Keep the faith and your chin up. My best wishes to you. Colleen