Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

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FAILED PROCEDURES

A forum to discuss member's experiences with failed TN/ATN procedures and post-operative and post-procedure complications.

Please remember WE CANNOT NAME DOCTORS FOR LEGAL REASONS.  

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Members: 110
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Discussion Forum

post MVD, lots of pain and pressure NEED help please

Started by sara. Last reply by Richard A. "Red" Lawhern on Friday. 3 Replies

I had my MVD about 20 months ago  in Northern California.I woke up with this horrible pressure on the right side of my head where I had the MVD.Since my MVD pressure on the right of my head has not…Continue

Padding grown to nerve?

Started by luvcats60. Last reply by luvcats60 Jul 23. 2 Replies

Has anyone went back after MVD and the Dr. not be able to replace the padding as it had grown to the nerve?If so does your Dr. think it maybe causing some of your facial pain?ThanksContinue

mvd

Started by ayre. Last reply by luvcats60 Jul 23. 13 Replies

Why do you think mvd fail????Continue

Anesthesia Dolorosa post MVD

Started by Rachel. Last reply by Lou Jul 10. 6 Replies

Just curious if anyone here was left with complete numbness and tingling like you just got Novocain from the dentist and it is starting to wear off? I was diagnosed with type 1 and 2 TN and failed…Continue

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Comment by Peter on July 5, 2014 at 9:24pm

Lou, I also have numbness on the right side of my face after gamma knife surgery on the TN nerve, I knew this would happen and I am getting used to the sensation. When I am busy I forget about it. However, I would rather have the numbness than the pain.

Comment by Lou on June 13, 2014 at 11:44am
I had Gamma last March in 2013. I received considerable relief, but oddly have an issue with numbness. It started with a spider web like feeling and now it totally encompasses my whole right side of my face. I feel so panicky. The neurosurgeon stated that this can happen in 30 percent of patients and put me on prednisone. My head feels like small creatures are setting up camp. The pressure in my ears is ridiculous. It feels like I have novacaine shot into the whole right side of my face into my nostril. Ugh. So tired of fighting. It's beginning to seem so surreal. I work out and teach and it's a real struggle. But I refuse to give into this. Does anyone have a suggestion for a med to help with the numbness? Help please..
Comment by JMUprof on March 6, 2014 at 4:32am

All---I had Gamma Knife back in June 2013 (9 months now).  I STILL CANNOT put pressure on the left side of the back of my head without having sharp, shooting pain penetrating from where the screw went in on the left side.  When this happens, it may be a couple hours before the pain goes away.  I cannot get comfortable at night because of course I like to sleep on my left side.  I've adjusted to falling asleep on my right side but will roll over while in my sleep.  Oftentimes this will wake me up  and I'll roll over or I'll wake up with a "headache" on the left side of my head.  To top this off, the left side is where I have my trigeminal pain.  Fun, fun.  So....my question is this:  I expected scalp pain immediately after Gamma Knife and BOY DID I HAVE PAIN AFTER.  But, have any of you fellow Gamma Knifers experienced or are still experiencing scalp pain months after surgery?  If so, do you or how do you find relief, if at all?  Any help/advice is much appreciated!  MANY THANKS!  I look forward to hearing back. 

Comment by Abby on November 14, 2013 at 8:12pm

Hi RueAnn...  Here's an idea copy and paste what you have written and send it to the Doctor.  In my way of thinking maybe you can let go and know he knows how you feel.  Send it by regular mail personal and confidential.  You never know maybe he will give you a call and whether you take it - that's your call. 

Hey my two cents..

Comment by RueAnn on November 14, 2013 at 12:21pm

I had a failed MVD in July for GN. Since then my neurosurgeon was saying he thought about trying a rhizotomy, but first I had to get my month-long ear infection under control. That was taken care of, and now I've called the NS numerous times to find out he's completely given up on me, has no ideas left for treating me, and best of all will not even return my calls. I was not looking forward to a rhizotomy by any means, but it was something to hope would help, much like the MVD. I've been trying to get answers from the NS office, and it seems since he has no way to help me he's just written me off. I was telling so many people this was the most considerate specialist I've ever had, and now I feel like a fool. He's called many times before, so I am hurt and angry that he cannot even be polite enough to call to say he can't help me. Have any of you had similar experiences? I am getting a referral to another NS, but am saddened by feeling like the NS was really trying to help and now since I'm a difficult case he's just given up. The pain continues to get worse every day, and it's been such an added stress trying to figure out why none of my calls were returned. I didn't choose to have GN, but I'm being treated like it's a disease I caught by my bad behavior.

Comment by Abby on November 7, 2013 at 4:09pm

Gail, this one might actually be short.  I am exhausted and may have figured out why.  I started Lamictal the beginning of October and 8 of 10 days waking up too early with a head ache.  So I am going to step down from it, because you know the last thing any one of us need is additional pain!  I can't believe it took me so long to put this together and so if I'm wrong no big deal.  It can be started again and like all the other stuff never sure if it was working anyway. 

I totally agree with rather have a Doc that would say hey I'm not sure then do anything!  What a mess.  The good news I sent Mr. Red Lawton a note and it opened up my eyes.  I'll get into that in the next note, because maybe I'll lay down.  Up too early and yes with a bad head ache.  Ready to get off this stuff and see what happens.  Pretty sure that's what it is as nothing other than that has changed.  Hope you have a good day and catch up with you soon!

 

 


Moderator
Comment by Gail C on November 6, 2013 at 7:53pm

Abby, I'm with you on on the amount of failed MVD or work for a while then fail  From what I read I come up with 50% at best.  I think a lot has to do with the expertise of the doctor doing it and knowing what to look for and what to leave alone.  I have much more confidence in a doctor who doesn't mind saying, I'm not sure I can help here rather than giving it the old college try!  I think everytime they go in there they are causing more damage - scar tissue that could come back to bite you later.  I think I will just sit back with my meds for now.  I tried the nerve stimulator and failed for so many reasons and am not willing to go thru that again.  I am huge into research (I worked for a neurosurgeon who did research and treatment for brain tumors thru the blood-brain barrier; so I am not afraid to read the research articles and actually enjoy it.  I would like to go to one of the facial pain conferences and hear options from all points of view.  You are right on the money about a good psychiatrist.  I had a GREAT one when I lived in Oregon and tried to find a replacement here in South Carolina and had no luck.  Only 2 in the town I live in and they are booked up forever.  Drove 3 hours to another who was only so so and then he quit taking my insurance.  So I stick with my Portland Psych.  I go to Oregon at least twice a year and see him and family.  We communicate via, phone and e-mail to and he prescribes all my medications.  He just is the "one" for me - I don't dare give him up; besides he gives the best hugs ever!  It would be nice to find a local support group here; have tried a few times with no success, maybe it's time to try again.  I enjoy chatting with you and exchanging "knowledge" -as  we both seem to be on the same page.  Take care.... Gail

Comment by Abby on November 3, 2013 at 4:20pm

Gail thank you for your comments.  I agree 1800mg gabapentin is plenty and not going higher at this point.  I had a heads up about the gabapentin and no will not get off it without advice.  Strange enough that everyone is worried about addiction, but these other non narcotics make a person just as dependent.  I also see where so many MVDs have not worked and my problem is that if there is that over 90% cure rate why do so many fail.  I have yet to see any solid stats are a large number of folks who have had them, but the cure rate is so high.  My career is in accounting and many of these numbers just don't add up in my opinion.  I have a friend who had an MVD about the same time as I did and hers is failing too.  So just odd the two of us had failed MVDs?  The Gamma Knife failed as well so statistically thinking how can the top of the two procedures fail.  Nobody tracks it and since it's so rare following TN patients should not be that hard. 

I also understand the fogginess, depression and not being able to make sense.  I have found myself not being able to come up with words to describe simple things and the next day fairly sharp.  I have heard of methadone and pain.  I'm so glad it's working for you with the nortiptyline.  Thank you for sharing that sorry that anyone would make you feel bad or uncertain about what treatment works for you.  I'm at a place where really don't care what it takes period.  It's just how many hoops to I have to go through to get there?  Surely I'd be close now

Really why would Docs want to make this any harder whether it be this disease or any?  I hear your being defeated and too many of us are.  I also see a psychiatrist who has been a great support and being an MD he knows the history with this.  He can understand and going to see him soon and get his thoughts as well.  I will see what he says about going to yet another neurologist since he knows the whole story.  I'm just going ask if he can run some interference here, because enough is enough.  He also is in a position to understand me nearing my breaking point, even though I'm not suicidal.

I guess my point explaining about having a psychiatrist is it has been an be asset for me.  If possible a good shrink or therapist can be an enormous asset for so many reasons!  They are good even if you are not crazy, but surely dealing with this TN can make a person feel crazy!  A great support!  Thank you Gail it is nice to hear I'm not alone.  Very sweet of you to write back. 

 

 


Moderator
Comment by Gail C on November 3, 2013 at 10:12am

Abby, I so hear what your are saying, I just recently hit a turning point that has given me some relief.  After 18 months of basically being in bed 18-20 hours a day rolled up in a ball; having been on 14 different medications, had a nerve stimulator implanted and later removed due to failure and a couple of nerve blocks and countless doctors.  I sooooo understand where you are coming from.  Just before my breaking point I was on Fentanyl patches for pain and Gabapentin.  I flew to Pittsburgh to be seen at the UPMC fully expecting to have MVD, but after having a specialized MRI it was determined at the 11th hour that it was too much of a risk for me to undergo the MVD.  Going back home defeated and having terrible depression I was at my wits end.  I finally went back to my pain management doctor and we made 2 changes based on he advice of the Neurosurgeon I saw and the expertise of the pain management specialist.  Stopped the Fentanyl and switched to a low dose of methadone.  And 2 stopped the Gabapentin and started on Nortriptyline.  2 days after I started the Nortriptyline I started to feel relief.  I've tried other "triptlines" before and they didn't work, why it worked this time, I don't know, I don't care it worked this time.  I'm no where near 100% relief... probably at about 50% but compared to where I was I'm happy as hell!  I still sleep about 11-12 hours a day, but I have my BRAIN back, which has made all the difference in the world.  Between being doped up and in crazy continuous pain I couldn't even put together a knowledgeable sentence together and I really thought I had lost my cranium function for good.  I don't know how long this "good" feeling will last, I try not to live in fear every time I feel more than a "twinge" of severe pain, but for now, as of today, I'm as happy as a clam.  My Pain Management specialist has warned me strongly, that the pain will wax and wain and I need to just learn to ride it out rather than increasing my pain medication.  I've tried at times to increase the Nortriptyline, but it makes me sooo tired; although an increase for one day has helped break a pain cycle before it gets out of control.  Now here's the two warnings 1) you are on a gobb of gabapentin!  If you decide to go off of it, take it real slow in decreasing your dose.  I was on a much lower dose and tried to go off of it cold turkey and went thru severe withdrawals.  2) Methadone has such a stigma attached to it that the pharmacy may give you troubles and count your doses like they are liquid gold.  You have to get a new prescription every 30 days.  Plus when I tell people in general that I am on it, I get some funny comments.  I usually keep it to myself.  But if this post helps you or anyone else on this forum, I am willing to share my experience.  I wish you well in seeking some sort of pain relief and would love to hear how things continue to go for you.  Just know, you are not alone!

Comment by Abby on November 3, 2013 at 8:47am

Thank you Gail!  I appreciate your comment, because this all could break a person or me!  My GP was thinking about palliative care then seemed to back off.  Wants to hear what this neurologist says as if I haven't already seen many Docs.  Then she mentioned upping my gabapentin to 3600mgs, but it was tough to get to 1800 and 3600 would leave me house bound.  They added lamictal and the combo is tolerable, but even with all the tweaking I need some pain relief for just day to day with a plan for my off the charts break through pain.  An emergency plan...  I was nearly hysterical to explain this to one more Doc!  I guess I will, but what will come of that.  Also my GP mentioned cutting the nerve.  Anyhow I think this is all in response to the crack down on pain meds.  I doubt the crack down has anything to do with real pain patients, but the doctors are scared and see me as a walking liability.  Really inhumane and lost so many days of my life.  Sorry for going on so long, but it is frustrating me.  I just need a break from seeing docs and my pain managed.  Even the last pain management clinic had a procedure - I'm like sure you do and really if a neurosurgeons can't figure out why would I chance this less knowledgeable, trained and experience Doctor.  Hell I live in Houston, Texas with a world class medical center!  Ok enough your eyes are probably bleeding from all of this...  Thank you!

 
 
 

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