1 Year Brain Surgery Update Trigeminal Neuralgia!

[@creativemomentswithdurinda]

Oh my gosh...to find out the surgery didn't work for you is heartbreaking. I cannot imagine having 1/2 your face feel numb all the time...AND to still have the pain. I give you so much credit for working through what must be a lot emotionally as well as physically..and still remaining upbeat and positive...AND still doing your videos and everything. I'm glad you are though because it's better for you to be that way..but wow...not an easy thing to do. It makes me appreciate your videos that much more.

[@katericochran4634]

Hi Abby. I went from watching your playlist about your grandson, to this playlist. I'm at a loss for words. There is so much I want to say, but my heart is filled with so much emotion that it's hard to get it all out, but I will try. I suffer from chronic back pain. I haven’t slept in a bed for about two years. I wake up crying every day because if I sleep past my pain dosage, it takes hours to get it under control. I can't do chores or I'm down for three days. And that's with pain meds. I have social anxiety disorder. I am bipolar. I have PTSD. I am depressed all the time. I just want to give up sometimes because it's just so hard. My husband left me a year ago after 38 years of marriage. He said he wanted out. He couldn't take it anymore. He told me last Easter. He had been secretly communicating with another woman for an entire year, since right after my Mother passed away. Two months after my step-son overdosed. He's 74 years old. I'm 61. In two years I lost both parents, both In-law parents, a granddaughter and two stepsons. Words can't convey how much emotional and physical pain I have been in. Then I discovered your KZbin channel. You are always so upbeat, positive and a very creative, gifted artist. Then, to hear what you are going through blew me away. I cried and cried listening to you. What a horrible, horrible ordeal for you, your family and friends. And you pushed through everything to make videos to try an reach others who have the same condition. That is amazing. You are a gift from God. Your attitude is so inspiring. I thank God that I found your KZbin channel. As painful as it was to hear about what you go through, I feel as if God is talking to me through you. Thank you Abby. You are a woman of grace and compassion. You walk and speak in beauty. I'm sorry to say, I have not depended on God because I was so hurt and angry. You have touched my heart, my soul and my faith in God is restored. Thank you for being brave enough to be so open and honest, unscripted. May God bless you richly. You are a blessing.

[@manny4445]

Bless your heart. I would have never know about TN or AD without you having the courage to share your situation with us. We never know what other people have to live with on a day to day basis. You being able to educate others about all you are going through, shows your character. Our son has Muscular Dystrophy, when he came off his feet and needed a wheelchair. He was having a hard time adjusting to his limitations, I told him that just because his body did not work like others, that was not a character flaw. Everyone has problems it's how you handle them that make you a man. He took that to heart and lives life, like you do with a positive attitude. You are beautiful just the way you are. Thank the Lord you have a supportive family, they are the unsung hero's in your world. I hope I don't offend you, but I will be praying for you and your family. My faith has gotten me through some tough times with coping with our sons illness.

[@PurpleCottageCrafts]

+Lu ODell Thank you so much for the sweet comment and more importantly for sharing your story about your son. What a great attitude he has, learning to live with his limitations and not letting them limit him. You are a great and supportive mother to help him along this journey. You absolutely do not offend me by saying you'll pray for me. I'm a preachers kid, my brother is a youth pastor, my hubby's father was a pastor (he passed away due to cancer) and 3 of his 4 brothers are pastors so we are a Christian family and I happily accept any extra prayers I can get. Thank you again for taking the time to watch my super long video and for your comment. Have a wonderful day : )

[@balancepoint71]

It is a living hell. Peace and mercy to you and all TN sufferers. It’s a comfort to know I’m not alone. I’m so sorry for all of us.

[@MsSuperklutz]

Gosh Abby I'll say it again you are very brave to make this video and you definitely are being of great help to those in your situation as well as to myself who knew nothing about this til you. I think you are doing great with all that you are having to deal with....It's truly great that you are being right to the point blunt and honest. I so admire your attitude as you struggle thru life smiling on the outside crying on the inside. God Bless you Sweetheart. Hope you were able to rest after this video and too cute about your doggy. Absolutely CONGRATS on your 1 year anniversary Thanks for celebrating with all of us.God Bless you Abby you definitely have a heart filled with love and compassion. I do look forward to your crafting videos.YOU REALLY DO ROCK!!Joan Smith

[@PurpleCottageCrafts]

Joan you are sweet and so very kind to me. I feel like me saying thank you isn't enough. I look forward to your sweet comments every time I put up a video. You are truly a special person to me and I appreciate you always...big hugs to you my friend😘

[@mialarson9925]

I am a new subscriber. You are a amazing woman. I have fibromyalgia and have a lot of pain in my whole body. I am new to papercraft, I did a bit of miniatures before. But I couldn't continue because of the pain. Thank you for being such of inspiration and giving me motivated to try to start with papercraft. Many hugs and love to you from Sweden! 🌹 💟 🌹

[@marygoff1224]

I thank you for your story, so sorry. I have had TN for 16 years and had surgery 2010 which did not work, so now have AD. Trying to find a supportive doctor which has not been successful. I live very simply and finally have the opportunity to live quietly. I'm not able to drive because TH and AD has affected my vision. My best to all the people who are affected with disorder, it breaks my heart ... hang in there!

[@LifewithErin777]

You are sooo strong, you are talking like nothing is wrong, much love ❤️

[@mahastikia9676]

Hello. First I want to thank you for all the effort you put into all your TN videos. I know how hard it is to speak with that pain! I'm also have TN (11 years) and made great effort to treat it with alternative ways (accupuncture and leeches are my helpers these last 2 years and I'm managing quite well, but I also take Tegretol. They all work together) I was wondering how you are now. It's been 6 years since this video (if I remember correctly :)) I live in Turkey and besides hospitals and doctors' pages and videos there are no TN stories of actual patients in Turkish so I'm planning to make one. Videos like yours have been a great mental support for me as well. Sending a lot of love and best wishes your way 💗 Thank you!

[@vickiphillips230]

Oh my gosh! I have TN too!!! 4 years now:( I'm going to watch your video now.

[@PurpleCottageCrafts]

Hi Vicki....I am sorry to hear you also have TN. Do you have a YT channel or a blog where you've shared your story? I'd love to read it and be a support person for you if I can. There are some great online support groups that I linked in my video, but please feel free to reach out to me if you have any questions ok? I do have other TN videos on my channel so be sure to check those out if you're interested. I'd love to have you as a subbie here on YT if you aren't already. Hope to hear from you soon!

[@grrwills]

Me too. It's been about one year. The anti-seizure meds and lots of rum and coke.

[@UnderATwilightSky]

Very helpful video! I'll be getting an MRI and then seeing a neurologist. I've been in alot of pain for 3 years. Stabbing et electrical shocks in my jaw.

[@dominiquewindom2598]

This video is more in depth than the other one. It really sounds like my TN; you understand the flare-ups that I sometimes have. But my Ablation Procedure (nerve burning), has eleviated a lot of the pain. I hate you are in pain, but you look like you are managing well; I do not even notice any problem, because you seem to know how to speak without pain. We with TN have to have tricks of the trade to keep pain at bay. Please hang in there.

[@dr.vikasthorat1331]

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[@pamelawest2316]

What is the medicine your doctor said came from England. Bless you, your videos have been so helpful…I have TN caused from SHINGLES…MY NEUROLOGIST WANTS ME TO SEE A NEUROSURGEON FOR OTHER OPTIONS… I am like you always have a lot of projects going…I am a retired nurse so I have medical experience but not with TN… Wishing you the best and keeping you in my daily prayers…🙏🙏🙏

[@barrettarchery5515]

Hello You are the 5th person I know from the “Lebanon “ area with TN. I got my referral and I’m heading up to meet Dr Burchiel! I would like to know what primary care you used in this area that understands TN (and the complexity of its symptoms) Thank you

[@dr.vikasthorat1331]

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[@marygoff1224]

What do people with TN and AD get dental help?

[@gr8H8er]

My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of stimulants. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and neurosurgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know.

[@scrapgirl14671]

Abby, I am sorry I haven't been in touch since you've been back. I am possibly suffering with TN too and would really like to connect again. Can we email or something? Maureen

[@PurpleCottageCrafts]

+Maureen Hayes Maureen!!! I have been worried about you girl. I haven't heard from you in forever. I am praying that you do not have TN...it is not something anyone should have to suffer with. Please send me an email so we can get caught up on what's been going on with you ok? My email is still the same as before. Miss chatting with you girl : )

[@tm4913]

Exactly.