I know I have asked this question before but June 24th I had MVD surgery up at Johns Hopkins by Dr. Lim. My surgery had a few complications with blood loss, air loss, and scar tissue. But it’s been a little over a month since my surgery and I’m still having TN pain! And now it’s like I’m about to cry sharp!! Lasting from five to thirty minutes! Where as before it was 5 minutes to two or so hours and dull pains. Two days after I was discharged the pains started back full force! We contacted them and they said to tell my neurologist because they’ve never heard of tht before! Soo I don’t know what I need to do?! Has anybody ever heard of this happening?
Aw, Kelly, I’m sad to read you’re still experiencing TN pain! Are you still on your meds or did you wean off at all? I don’t think it’s right that Dr.Lims office has seemed to blow you off to your neuro, I remember you don’t live close to John Hopkins BUT he should be following up with your concerns and directing your neuro on what to do, what to look for etc. get your parents to push Dr.Lims office to follow up properly.
First and foremost is pain relief, so get in touch with your neuro to get your meds working for you again. Next is getting Dr. Lim to speak with you & your parents regarding your current state. He needs to be available to answer to you regarding your concerns.
I have read of some who have woken up with TN pain after mvd and after 2 months were pain free, and then others who woke up pain free and developed TN pain again within a few months.
There really is no rhyme or reason, MVD is not a cure, it’s a “possibility” to reduce or eliminate pain, unfortunately it doesn’t always work, and if it does initially work it doesn’t always last.
Some are very lucky and never experience TN again.
My MVD reduced my pain, it didn’t take it all away.
Those are some hard truths but I do believe we need to hold onto hope and you still have a chance that MVD will have worked or you, maybe you just need more time? I don’t know, but I am praying that you see positive results soon!
Maybe the added complications you experienced might be delaying your recovery?
Please follow up with Dr. Lim ASAP.
In the meantime I’m thinking of you and hoping for the best for you!!
Huge ((( hugs )))
oh no--so sorry to hear this... you need to get on some meds ASAP. Maybe you just need some more time to heal since you had some complications.. I think your doctor should see you for a followup though-- he needs to figure out what is going on!! Did he say he found the problem during surgery? I will pray that you get relief soon!!
Get your surg. Rept…get local dr to call you in lidocaine patches for your face immediately…and bug dr. Lims office till they are sick of you…in many cases it can go away within a year…it takes a year to heal all up in there…keep posting!
I am still on two out of four of my medicines-- I was not tampered off them two, just took straight off. I didn’t want to be looking off five or six days after surgery like I was but his nurse prac. Said it should be fine! But even with the medicines, I still had head pain! Nothing elongated it but the one I was allergic to. Maybe it will take time but then again I don’t understand HOW I’m experiencing this pain! They wrapped my nerve, lifted the vessel off and put something between the two! Soo I don’t see how they would be touching or if they even are like as in is there something else??
I have a neurologist appointment coming up which of course I haven’t seen him in a year or so because I was going with a neurosurgeon! Soo really all I believe my neurologist can do is change my medicines once again! I wish they would communicate! But I thank you all for the nice comments and thoughts!!
hmm--that is interesting-- seems like there might be something else going on- is the pain at the same place as the old tn pain?? could it be from the air /cement thing they did on your bone??? Well-- you shouldn't have to guess! they should maybe do another mri or something... it was major brain surgery so it makes sense that it could take a good bit of time to heal... our pastor spoke recently on the fact that faith grows in times of uncertainty.. well--we should all be faith giants on this group!!! this is the most unpredictable ailment in the world... prayers to you for your pain to diminish and a turnaround to happen soon...
Same place but just a sharper pain! Which as well doesn’t make sense… I’ve been told I’m a “medical mystery” with all my health problems combined. But this verse
“For I The Lord, thy God will hold thy right hand, saying unto thee, Fear not, I will help thee.”
-Isaiah 41:13
Helped me through my whole surgery and recovery!!! I appreciate you sharing that!! I know Gods timing is perfect but I’m just eager for an explanation.
verses from Isaiah have comforted me through a lot of what life has sent my way...so glad to see that you have found that out so early in life... the encouraging thing for me is--no matter what God sends our way..he will use it in our lives to grow our faith and to have us be more compassionate to others who are in pain.. nothing we suffer is ever wasted...but used for good..I have to hold onto that!! ;-)