Unfortunately, the pain is back full force. She had two and a half pretty good days, where she could tolerate the pain she was feeling. After speaking with her surgeon in NY, we have decided to not do any more infusions. He said, in the end, all the success of this treatment really proves (at least in her case) is that she does indeed have TN and ON. I have researched the side effects of these infusions and have not been able to find much info. For the past five days, she has experienced: EXTREME short term memory loss(worse than she gets from her oral meds), irritability, anxiety. Hopefully these go away as the med leaves her system.
I wish I had better news-I was so hopeful for her. And, as always, just because she had this experience, doesn't mean everyone else will. Our bodies all react differently.
Peace and pain-free days to all of you!
Is she an MVD candidate? I’m sorry this didn’t help her much!
She has had 3 MVD's! 2 were complicated by MRSA infections and the third one was complicated by CSF leak and MRSA infection. After the third one she was pain-free for about 10 days-I actually have a video of her outside in the sun and wind, able to enjoy without pain! On day 11 she started draining CSF from her nose and it was all downhill from there. They say it's not possible to undo the success of an MVD, but I know that after her third one she was good, until they went in to fix CSF leak and clean the MRSA out. She came out of the surgery with occipital neuralgia AND TN symptoms were back! She is currently researching what else can be done. She absolutely refuses to give up! SHE is an inspiration to ME!
You both are an inspiration! And we can't give up, so sorry to hear it didn't work for her, been thinking of y'all and sure had hopes it would. You both are in my prayers and thoughts. Thank you for update and please keep us posted. Sending gentle hugs,
So sorry the pain has returned. Has anyone ever suggested a nerve stimulator? They are used for ON and TN. I had one implanted in August for ATN pain and am very happy with it. My NS is in NY, I would be happy to get you his info.
Christine-That is actually the next step. She has an appt with a doc here at home (Cleveland) next Tuesday. However, the doc she really loves is in NY(Long Island). Depending on how things go here at home on Tuesday, we may end up back in NY. Praying for good news. Thanks!
YES!!!! We love him!!! Do you see him too?
Yes, I love him too. He did my MVD on the right in January, and the PNS in August. I have ATN on the right for almost 10 years, classics TN shocks for about 18 months. The MVD worked for the shocks, but not the burning boring pain,so he suggested the PNS, which he did in August… I am going back to have the MVD on the left in two weeks . I wouldn’t let anyone else touch me!
I’m glad you have a top doc…it’s the best odds to fight this and get some remission time!
Just an update ...saw doc in Columbus at OSU Medical Center. Meghan is scheduled to have PNS placement on 4/2/14. They will place one electrode by occipital nerve for the ON and most probably three electrodes on face for the TN. Praying to God this works for her!!! She continues to be in horrid pain daily-meds are all at max doses. We went to ER three days ago just to get i.v. meds to give her some temp relief. Docs there are great, they just feel so helpless.
If anyone out there has had PNS and has words of encouragement, please share so I can pass them on to her. She is so afraid that this too will not work. I can't blame her, but continue to be her cheerleader. We need to stay positive and pray for the best!!
My New Year's prayer for all of you is many pain-free, comfortable days ahead. I pray that 2014 will be the year that they find new answers to some very old questions!
Happy New Year!!!
Glad you checked in.... put PNS in the search box to get more info also from patients : )
Look into spinal cord stimulator. Medtronics is who I have mine through. It’s not a cure all( well at least for me) it has given me less visits to the ER though. I also still take meds which I was hoping I could stop. Best of luck.