Had surgery for mechanical neck issues, no TN or ON 2 wks postop!

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That is fantastic Lori!!!! I actually met my husband while we were both volunteers for a congressman running for office many years ago!!!! Haven't done anything like it since, although I can bet it's exciting and now that it's personal, it's even MORE exciting!!!! You GO Lori!!! That's fantastic! I love it! Love your enthusiasm!!!!!

I'm a graphic designer. I work from home for the same small company I've been with almost ten yrs now in Phoenix.

I was actually thinking about you today..was on fb and of course there's tons of posts to click like on floating around about Dr. Carson and I thought of tagging you. :)

I can't wait to hear how your appointment goes with his office. You sound like a very complicated case. Your attitude is absolutely wonderful though Lori. I bet the girls up here flock to you like a fly on sandpaper, lol! I hope you have more good days than bad with your TN. My attacks are far in between-but severe. I consider myself lucky. Tell me more about you when you get time!

Really a pleasure talking with you..HUGS, Luv Julie

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God Bless you Girl! I hope you continue to feel better & better!!!! I Do have a c5 and c6 issue. I have an osteophyte and some herniation as well. When I had my first TN attack two years ago, They were unsure if some of the pain was coming from my neck. This current attack has happened and its the same story. I want to DO something because I cannot tolerate the meds!:( was Scheduled twice here in Detroit but then he wanted to look closer for Eagle Syndrome and other possible causes of my pain. The feeling I get goes on the left side cheek and under chin but burns terribly in the ear. sometimes on both sides and makes up from Neck. It is very HARD to be patient during all this. You are an encouragement to me today so Thank You for this Post!! ~ Julie

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Even with my lupus inflammation I still haven't had a single TN or ON attack since being out of surgery. Whether it's a perfect storm of conditions that cause it for me or what..I needed the surgery anyway and if this works then it's very very very wonderful! It also says something about cervical spine issues and brainstem issues. I've had people tell me that the brainstem is just too far from the spine to be associated with any cranial nerve issues, but it isn't when your talking about inflammation. Inflammation is the body's response to issues like mechanical and bone defects. Here's an article on the cervical spine and TN: http://whydoihavetrigeminalneuralgia.blogspot.com/

Much love and happy St. Pats! Love Julie

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Hello Julie, I’m Bellalarke. Just read your posts and had a look at your blog. Wow. I hope you continue to be pain free from the TN/ON. Thanks for sharing your journey and all the information you’ve collected. Your enthusiasm for recovery and getting to the bottom of all of this brings me great goodness! You are inspiring.



I don’t have Lupus but I do have fibromyalgia. I have been diagnosed with TN2 and GPN. I have some degeneration of all of the cervical spine and mild bulging, fusion of C5-6, and a bone spur. Plus the roots of an undescended wisdom tooth and molar that run along the sinus cavity (but report reads “of no clinical significance”). Also used to suffer terribly from cold sores, etc. An MRI Flair showed several contact points of superior cerebellar artery with V, then later a Fiesta read as normal. This drove my neurologist nuts. Recently I’ve had episodes of hemifacial spasm and feet spasms and cramping which I record on my iPhone (one actually happened in neurologists office). Anyway, more than three years of hell that started with deep piercing ear pain. Have and appointment for a spinal tap. Waiting for an appointment with another neurologist who only takes “unusual” cases. On the list to see neurosurgeon. Taking 3,600 gabapentin, some tramadol, just added trileptal, and going to begin nortriptyline.



The information you have gathered is very helpful for me. Thank you. Sometimes I think it is a bit of ALL of the above that gives me this pain.



May you continue to be pain free! May you continue to be radiant:)

Xo

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I definitely think there's a "perfect storm" of conditions going on as well. Your statement "ALL of the above" is probably very very true!

Your possible hemofacial spasm is something I'm familiar with. After a tn attack I have the eye spasms for months afterwards. My new neuro did an EEG and found slowing in the left side of my brain. He said I have a seizure disorder. It is myoclonic seizures, a series of small jerks. You might have seen that at my personal blog. Here's a link to the video of me having a small seizure. Maybe they look familiar to you?

Of course I can't help thinking it's all related somehow. My rheumatologist and neurologist are very slow to say these seizures are from my lupus. May not have anything to do with the TN. Not sure. The muscle involvement with my TN is seizure-like. Similar to dystonia in my case.

Thanks for your encouragement!!!!! So far so GOOD!!!!!!

Love Julie

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Oh thanks for posting that , Julie. Very brave!

Mine starts with upper lip, pulls up into a a snarl, then the whole cheek spasms and then the eye. Not my best look! I had the first myoclonic jerking and similar dystonia eighteen months ago and it was attributed to serotonin toxicity from combination of cymbalta and tramacet (which I had recently stared but fairly low dose). I quit taking the cymbalta and jerking went away. I always thought sunlight played a part. The past couple of years July and August have become almost unbearable.
So now the re- emergence of the facial spasms under investigation but at a snail’s pace.
When what I call “the whole orchestra” gets going, I get dizzy too. Brain sort of comes to a standstill.

Interesting EEG results, your brain slowing down…scary, but it’s always good to know. I guess time will tell with your surgery.

I feel as dumb as a post these days.

Wishing you continued recover.
Xo Bella

27

Hey Julie! Very cool about you & your husband enjoying politics too - volunteering with campaigns has always been one of my favorite things to do, makes me still feel like a young, fearless activist, LOL! ;D Haven't been on much the past couple of days...last Friday my pain man. Dr. called after talking to my local neurosurgeon (the one who said it would take THREE MVD's to fix my TN - CRAZY!!!) & talked me in to coming in tomorrow for an epidural for my c-spine unending pain - they've never worked for me before but I have to "play the game" just so they'll still keep me as a patient & prescribe my gabapentin & fioracet for my TN pain...I HATE these stupid games Dr.s play - I think they are worse than most patients to be quite honest! :/ Anyway, they are also being quite "demanding" that if I'm not going to agree to a 2nd AND 3rd MVD surgery here by the neuro. here, I MUST go out of state & get another opinion & treatment options...I assured them I am working on getting another opinion at Johns Hopkins so maybe they will back off until after I can get there & back. I know how stress affects my TN (& ON) & I feel like I've been put through the ringer jumping through all of these hoops...exhausted, & pain level through the roof!!! Sorry to be such a complainer tonight, just needed to "vent" & this is really the only place I can do so because you all know how horrific the pain can be...after my 1st FAILED MVD, my pain became constant as well as in all three major branches of the trigeminal nerve - but I hide pain very well, I have a FANTASTIC POKER FACE, LOL!!! ;p And I try to keep a smile on & laughter going at all possible moments...most people around me have no idea...that's a good thing though, I don't want pity. Honestly though, I sure miss my old life - active, happy, social & excited about what the day would bring! I still hold onto a thread of hope that one day I will have that life again...& I believe God will never give us more than we can carry. I'll try to be more UP BEAT with my next post - hope you are doing GREAT my friend - look forward to reading your progress & healing!!! XOXO

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Lori, do not EVER, EVER EVER feel bad about speaking your mind about your pain! That is what this place is for. We understand here. I know I do. I'm sorry for your pain, and especially sorry/angry for your botched MVD.

I know exactly what you mean about pain management doctors. I have been in pain management many years. As a matter of fact I was there today to get my DATED scripts, had to take a urine drug test, and get some cortisone shots in my feet. My pain doc is not happy that I had neck surgery done since he had been giving me RFA's for many years. Last time I asked him what he thought about my c spine he said he didn't think I needed surgery yet. At the end of the day though I had to go home to ME and the incontinence and balance issues were really griping at me. Not to mention the radiculopathy that came back after he accidentally gave me an rfa in the SAME side of my neck two weeks in a row! Big OOPS! I never called him on it although he certainly did goof. lol

I could tell you some whopper horror stories about pain mgmt doctors and pharmacists and the stigma that comes along with being a chronic pain patient on narcotics. I mind my p's and q's and play along as well. I work from home, always make sure they are familiar with that fact, and I'm always smiling. They do not like to prescribe pain meds to people who show pain. Attitude is everything though so I suppose it doesn't hurt anything, right?

Well..I got my electric bone fuser today! I wear it a half hour every day. I was told it splits the cells but they grow back after about 20 hours. Interesting. And this helps healing.

Idk if you or I or Bella (up there, hello Bella!!!!!!!) will ever have our old life back, but I do know that this life is still good. I don't wake up to the sun in my window anymore (I have double black out drapes, I am highly photosensitive), Idk if I'll ever romp on the beach like I used to..but I still wake up!!! I still have a new day each and every day!! I just handle it differently. I use a comfy pillow on my neck, I ride the supermarket carts when I need to (plantar fasciitis and connective tissue issues sometimes), I adapt. We all adapt. The pain has become a part of who I am. I don't know if it drives me to do things or causes me to not do things, but the fact is it is there. Some is easier to deal with others. We just do..I want to share a story with you..better yet, I'm going to direct you to my friends blog where we are having this same conversation.

I've long described my experience with tn attacks during the worst of them as horrific and I have said in describing them that if you would have handed me a gun during it I would have used it. This is a lie. Here's the thread: Tala's Reflections Blog I hope you'll check it out. Tala is a wonderful smart person, she's native american and really interesting.

I hope you'll read it when you have time.

Lori Lori Lori...do not agree to another surgery with someone your not sure of..keep them on that thread..yikes!!!! So sorry you have to deal with that stress!

Love to ALL, HUGS, Julie :)