Will you be Vegas for me?

So I had my post op appt yesterday with the surgeon. Left the appt nearly in tears. I felt completely like my entire 19 months with Tn had been invalidated.

The suregon did not even know the correct month of my appt. This was my six week check in. Seriously!? Despite the fact that I have called in twice during that time with questions and concerns.

When I mentioned I had been hospitalized two weeks later with a bowel obstruction, which I had called and notified them of, he asked why I had an obstruction and seemed quite put off that it had been diagnosised as a result of narcotics. You put me on the pain meds buddy!

Asked how long I was in the hospital for. Should have been about three days but was a week due to the complications. Brain swelling and needing steroids. Vestibular issues as a result and needing physiotherapy to relearn stairs. Was even encouraged to continue inhospital therapy to receive more supports.

The kicker was that he now proclaimed that I never did have TN and should go off my meds. I am still having lots of TNII pain and some type I as well. I have a copy of the operative report. His pre op diagnosis was right sided TN. His post operative diagnosis was the same. He said he had nothing else for me but to keep him posted

I suspect his change of mind was to keep his stats looking good. I knew going into surgery that it was not neccessarily going to work and donot fault him for it at call. I told him that too.

I am in shock at his response. I am looking forward to seeing my neurologist next week. Hopefully he will be more compassionate and support me in my continuing journey with TN.

Finally, what does your atypical TN pain feel like and how do you find relief? It feels like all my teeth, top and bottom, on the right side are infected. This along with the occassional zap does ot make for a fun day.

Thanks for being Vegas for me friends. I knew I could count on you for support.

Patty, Oh my! I am so sorry you are having such a terrible time, between the surgeries, the bowel obstruction, the surgeon that doesn't sound like he understands, and TN, I am very sorry you are having to deal with this! Yes my tn also makes all of my teeth, my ears, feel like they are infected very bad also, the whole right side of my face and head burns with the boring, aching, etc. pain. I don't know that my neurologists really understands how bad this really is either.He did increase my triliptal from 600mgs. a day to 1200 mgs. it has been helping some with the burning boring, in my face,nose, ears (a little) and teeth some,nothing else at all. I just started the increase this morning. I hope soon it will help way more. May I ask how did you know you had a bowel obstruction? Wishing you to be painfree very soon! Dawn

What an A$$. !!

I hope your neuro is better and nicer!

Lidocaine patches was for my tn 1

Dawn Monarch, it was very obvious to me that something very serious was wrong withmy bowels. The pain was so intense I could not even move. I had not had a bm since leaving the hospital despite taking stool softners and laxatives. My mom was my babysitter that day, she is also a nurse, and when she saw me she immediately called 911. My friends now refer to me as the Poop Police because I nag them to watch their systems. The bowel obstruction was 100% worse than TN!

And yes Kc Dancer I agree.

Patty,that is terrible! You said it was caused by the pain meds? Do you think having surgery brought it on? I pray that you get feeling better very soon! Soft Hugs! Dawn

It was definitely as a result of the surgery. The meds to put you to sleep also put your entire system to sleep. That combined with morphine put my gut out of action. Usually not as big a problem and could have been prevented had they followed standard hospital care of giving a stool softner 48 hours after surgery. The docs in emergency called it narc gut. I do not blame them for it but sure as heck don’t blame me. It just happened as an oversite of all of us.

Oh Patty, I’m so sorry, I can’t even believe it and yet I can, does that make sense?
I picked up on the ego the day before my surgery…but never experienced it again. So I shrugged it off…
He should have had your file in front of him, taken the time to read it before seeing you…
Just because you had no compressions does not mean you don’t have TN…just because MVD didn’t take away your pain does not mean you don’t have TN.
The fact that he’s stating this is exactly what’s wrong with the medical community, sooooo much misinformation circling about. Ugh, it’s so frustrating!!
Please don’t lose heart, YOU know what you feel, trust that. Always.

I had a very well respected Neuro tell me years ago that I didn’t have TN because bilateral TN is rare and I didn’t have MS. ( my pain responded to tegretol immediately, and other than the bilateral aspect was “textbook”) seriously, if I wanted attention why would I pick a relatively unknown or worst pain known to man condition?? I left that appt. in tears…
I hope your neurologist can offer a"new" plan …huge (((( hugs )))), Mimi xx

I have my operative report and he did quite a bit of work with several small vessels. I am glad I have the official diagnosis in writing. I suspect if I had pronounced myself cured and kissed his shoes I would have had TN. I guess you can’t be pretty, smart and compassionate.

Patty, I sorry you were so disrespected by your surgeon. I've walked you path. There is no excuse for your doctor to have treated you like that. Doctors indifference is cruelty. I've experienced too many times. I believe all of us TN & GPN suffers have suffered from doctors indifference. Even worse is their standard go to of 'it's psychological'.

What a douche! I have type 1 so I don't know exactly how yours feels. Sounds like that doc needs to be fired!

patty,

Your neurosurgeon (and i hope by now he's your former NS) is a creep. ewww.

there's nothing I've experienced in this life worse that this pain. i take that back being treated with disbelief or contempt by a doctor in the face of this pain is worse.

i have type II gpn. it's largely thought that opiods don't help but i get a little relief with Percocet. tolerance builds quickly with this med so i can only take for 2-3 months.

i had an MVD that was unsuccessful as well.

hope you had a good appt with neurologist.

have you thought about PNS - peripheral nerve stimulator? you've been through a lot. probably too soon to give real thought to another procedure. there are other options out there. viable ones

wishing you the best. we're here to support you!!!

i too had a failed mvd. still searching for effective strategy.

What bothers me the most is how he wrote i was adamant to have the procedure on the operative report and how he seems to think that a failed mvd means the disease never was. Try selling that theory to people who have cancer surgery and still need treatments. He suggested the mvd and i agreed. Darn those uber egos surgeons have but in the same voice i would never see a surgeon who seemed anything less than confident.

Patty -- My surgeon also blew me off! I have had post op issues for 14 months and we are still trying to figure it all out. I just finished 6 weeks of IV antibiotics for a mystery bacterial infection and am now working with a new ENT doctor to figure out the mystery pain near the mastoid bone -- see my post a minute ago -- Lord have mercy on us all!

I pray you find some type of relief! I am hoping mine is just around the corner.