Well, it will be 5 months soon since my MVD…I wish this was a happier update but I’ve hit a bit of a bump in the road…
Unfortunately 2 weeks ago my little “twinges” of pain started to increase …
Coincidently or not…at the same time I developed my 3rd tiny rash at the base of my healed incision. This time was different in that I felt pain inside my head just on my MVD side.
The other two times, there was no pain it felt just like an ingrown hair.
My doctor prescribed a stronger cream to treat the rash, and asked me to come back in a week.
In the meantime my TN pain worsened. After 3 days of nightmarish pain, having to pull out my trusted heating pad for the 1st time since surgery…
I decided to increase my Tegretol by one pill. This has reduced my TN pain but its not quite gone.
Not an easy decision to make.
Back to the doctor yesterday and although the tiny rash looks better, the radiating pain caused my doctor to be concerned about possible shingles.
He said after surgical procedures and persons with low immunity this can occur.
So…he prescribed me a 7 day course of anti-virals (which are already causing me nausea, headaches and vomiting ) just in case.
Right now we’re not sure what is what. Has the TN pain returned/worsened? OR is it just aggravated by a secondary issue like shingles or something else entirely?
My MVD worked to reduce my med resistant pain, it did not take it 100% away but my day to day life is 100% better.
Before MVD I was in high levels of pain 24/7 on 3 meds and nothing touched the pain, rather it was escalating…after MVD I have had no pain, my pain has been managed with just Tegretol.
I personally don’t think it’s shingles, but I’m glad my doctor is being pro-active.
I was cursing him a little as I was up all night sick to my stomach.
He was very disappointed to hear of my pain returning…as we’re my husband and daughters… Ugh the look on their faces when they saw that heating pad…of course no one is more discouraged than I right now.
Hopefully having had the MVD the result should my pain worsen could be that at least it may respond well to the meds this time. My right side TN1 continues to remain quiet
I’m very grateful for the freedom from non stop pain the MVD provided me and I hope it continues…choosing to believe this is just a little speed bump.
Not going to be around much the next few days…due to feeling unwell.
(( hugs )) Mimi
Mimi, So sorry to hear of your speedbump and all you are going through. I will be praying it is just that and the pain will again decrease and go away. I can feel your understandable frustration and when you feel up to it, please let us know how you are doing. Rest as much as you can and be good to you, can always tell through your posts what a special lady you are :) Sending you a gentle hug.
Wwww, Mimi, sorry to hear you are suffering so! I had an issue with my incision at 4 months post op. no rash, but clear fluid draining from the bottom of the incision that sent me to emergency to have to incision opened to check for infection. No infection, and no real answers! also experiencing pain in my head near the incision area.Turns out, my body would not dissolve the interior dissolvable sutures, and was pushing them out instead! I had had bits of suture migrating out of the incision since my surgery in January, and when I saw my surgeon in July, he removed the final bit, and solved the mystery.
I don’t know if this is a possibility in your case, but I do hope you get to the bottom of it soon, and get back on the road to recovery.
Christine
Mimi...I will keep you in my prayers that this is just as you described a speedbump...you have been through so much you deserve a break / Stay positive hoping the meds clear it away and its not the TN...Ed
Sorry to hear this Mimi. We don't communicate on here, I see you putting your heart & soul to ALL those suffering from TN/TN2 so I wanted to say I hope feeling better comes soon.
Thanks everyone!
Had an encouraging day yesterday…however today not so much.
Stealing from Oprah here…“One thing I know for sure”…is that LwTN is consistently inconsistent!
The TN pain has lessened with the extra 200mg, just not as much as I had hoped…
Refuse to increase again unless it gets out of control…see my neuro in a few weeks so we’ll re-evaluate then I guess.
For now just living one moment at a time…
Appreciate your notes. Thank you, Mimi xx
Mimi darling, I am gutted for you. I hope this is a glitch that passes soon. Also hope you don’t have shingles. I was so very ill when I had it, fingers crossed and a massive E- hug xx
Mimi, I was beginning my TN journey about the time that my husband had shingles which he developed on his face and it was so weird when he described similar shooting pains I was feeling. I wasn't telling him about my occasional flashes of pain thinking that if I ignored them they might go away. Until it was so bad that I couldn't ignore it. But I would not give up on your pain being caused by shingles. But he did have a blatant rash of his face. Don't despair. Also don't feel bad taking the meds that reduce the pain.
You are a beautiful person that helps all of us daily with your wisdom and insightful advice. I refuse to believe you are going to be tortured by the dragon again. You are strong and maybe you'll slow down for this speed bump for a bit, but you'll put your foot on the gas again in no time. It's what I must believe for you. None of you deserve this crap. Stay positive and strong, as it sounds like you are doing. I wish you good health always.
Mimi, my heart aches for you. You have been through so much. My first thought when you mentioned the rash was shingles, I hope they have found the correct cause now. It sucks when the cure makes you feel sicker than the problem itself. I think you hit the nail on the head, have to live moment to moment, trying to be thankful for the good ones, praying they out number the bad ones!
Thank you so much for all your well wishes, means a lot.
No shingles like rashes have appeared THANK GOODNESS! Still taking the remainder of the 7 day anti-viral meds.
Received a call back from my Neurosurgeon’s office, his assistant called me and took down all my symptoms and concerns and will discuss with my surgeon this Thursday to get his opinion. I’ll receive a call back by Friday or next Monday.
In the meantime, my TN pain on my MVD side varies in intensity, from a constant dull ache 1-2/10 to a 7-8/10 so bizarre…with periods of no pain what so ever.
I see my neuro next week as well, so we’ll see if anything can be determined as a cause or if this is just a return of the pain.
Either way I’m ok. Just thought I’d update…
(( hugs )) Mimi
A relief to hear from you, you have been in my thoughts and prayers! Hear ya on bizarre with all this, had the worst attack in years this morning, fine when I woke up and then there it was for hours, increased meds, some calming, but that dull ache/burn which brings on the anxiety. Just glad to hear from you and let us know. Hoping the remainder of the meds will take the pain away for you. Gentle Hugs,
Mimi! You are such a positive voice on this forum! You have given me such kind words over the months. I hope that you are feeling better, and your speed bump is in the rear view mirror!!
Cyber hugs- all my best- Tiff
Mimi! You are such a positive voice on this forum! You have given me such kind words over the months. I hope that you are feeling better, and your speed bump is in the rear view mirror!!
Cyber hugs- all my best- Tiff
So sorry to read about your speed- bump. Having to get heating pad out again and also bear your family’s disappointment as well as your own on top of all the pain is tough going. Hopefully by Monday your NS will have some answers. Or bells bells, the pain might even disappear again by then! Though while you’re waiting, I know you’ve got the right stuff, you won’t let your mind run away on you.
