Wow
You rest.
Thanks for letting us know.
but now-you rest!
Gentle hugs
Ok letâs see what i can get done todayâŚwell first off I want to say if you canâŚGET THE OPERATION DURING THE WEEK! Mine was on Friday and a lot of the problems i encountered wouldâve been fixed if everyone i needed to help me wasnt off for the weekend. Without going into detail ( u can message me if u want) Johns Hopkins was a frustrating let down. 
Iâm very pleased with the actual surgery Dr Lim performed but everything after was âŚwellâŚdisappointing and frustrating. First off I actually had drs and nurses not even know what Nucynta is! They had to look it upâŚthey had to call and question if to give it to me. It is one of the regular prescribed meds Iâm taking not only for tn but also very painful chronic Myofascial pain including nerve damage pain. Sorry Iâll fill in more laterâŚGod Bless
It would seem reasonable to call and ask if you were questioning why you werenât getting it. especially if were given any post op pain medications. It may be prescribed coming in, but post op and given with other opiods it could easily kill you⌠Its a rarely prescribed med and not used in a hospital setting. Iâm not surprised they were unfamiliar with it on a surgical floor. Other than that how are things going??
TJ
Hi
Wow
strong lady!
Thanks for tip.No Friday operation for me.Or Monday morning after a football game.Donât need them arguing about a touchdown while mucking with my brain.
You are doing amazingly well-writing and not misspelling words.
How is the pain?
Can you feel a difference?
When my son got hit by a car and was in hospital many of the staff did not know what Spina Bifida was.
They acted like he was a baby for not being able to tell when he was having a bowel movement-but he is paralyzed there with the spina bifida.
Just focus on getting out alive!
And healthier.
Hugs
Hi guys 
canât sleep so Iâll text a little âŚi was allowed to take my normal Nucynta er as regular because i brought it with me (thank God!) but was actually sent home with no pain meds at all! I guess they thought the Nucynta i already take would be good enoughâŚbut it wasnât thatâs for sure. So i called to ask for a little something else like percocet for the incision pain (be prepared itâs a bear) but alas the answer is no. âYou have a pain doctor that you normally see so u have to ask himâ. Ok well this wouldâve been good to know before the operation and i wouldâve sched an apmnt w him for day after i come home(its usually a minimum of 2 weeks to get apmnt). So another bit of advice: BRING ALL YOUR MEDS W YOU AND SCHEDULE APPOINTMENT WITH YOUR PAIN DOCTOR WELL AHEAD OF TIME. Ok so just about falling sleep but wanted to say that i am having zero shocks, zaps, twitches, or aching burning cheek since the op! All the pain is from incision, neck, and horrible âall overâ headaches. If i try to stand up normally my brain feels like itâll explode from pressure. Ok bye byeâŚGod Bless
Hi everyone so itâs exactly 1 week post opâŚitâs funny because as i was under the knife, Trump was being inauguratedâŚand my husband said he did a lot of praying for me but was praying almost as much for our president lol! Anyway didnât get any sleep last night due to horrendous headache. Something is def going on in there. Also had to go to urgent care because of uti (very common they say from not being able to completely empty your bladder due to anesthesia) and the fact i realized it has been 10 days since Iâve pooped. They gave me med especially for constipation from opioid use so weâll see. Thinking about the Hospital hereâs more advice: BUY A FIRM NECK PILLOW! It will help you keep the ice packs in place and trust me ice packs will be your new friend. BRING A GOOD LIP BALM! I used DCT(daily conditioning treatment by Blistex). Your mouth and lips will be so dry the first few days. Ok thatâs it for nowâŚmy brain is fogging up lol
God Bless
Hi Candylee
If I ever have an MVD I will be reviewing your tips.Thanks so much.
feel better soon.
How are you since MVD?
Had a month or two of relief but they came back not sure what to do nowâŚmy husband wants me to have the surgery again but on my left side. Since Iâm bilateral he thinks that maybe it will work this time, but I havenât had the courage to try yet.
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Hi Candylee
I am so sorry that it is back again.It must be like having a painful ghost in the body-playing stupid games.I hope that you find the pain relief that you are looking for.You are a brave soul.
Havenât been to this site in years so if it helps anyone MVD has resolved zaps, lightening for most part so thatâs great 
but TN 2 still plagues me. Fentanyl and gaba among others does help. Trying to get pain pump. If anyone wants to talk I can go into more details God Bless!
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Glad to hear youâre doing better, Candy!!