Update 3 weeks after MVD

Hi All,

Just wanted to give you an update on my progress (and lack of) at my 3 week mark. I'm recovering so well from the surgery. I started driving yesterday, although I could have earlier. My incision only bothers me when I try to sleep on that side. I had my first day yesterday with zero surgery meds - not a single tylenol or ibuprofen. I decided that once I hit 3 days in a row like yesterday, I would allow myself to have a glass of wine so hopefully that will be on Thursday :). I'm going to get on the spin bike this afternoon and see how that goes. I've been walking 3-4 miles most days and tried running for a minute or two but figured I'd stick to the low impact for a couple more weeks. I barely notice that my surgery side ear is not 100%. It is just slightly plugged up and clicks/pops just a bit if I yawn or swallow.

On the down side, my TN pain is still here :(. I'm still on my full dose of Tegretol 1200mg that seems to be working about the same as before surgery, maybe a little better now. I realize that my nerve needs to heal still so I took a "day off" yesterday and literally hid in the basement all day, read, watched movies, napped, stress free, no talking, etc. This did the trick but as soon as I was up when the kids were home, dinner, etc. the TN pain crept back. I can't live in a talk-free, no-stress, naps/movies/books world so I guess I will just do more of that these next couple of weeks to hopefully give my nerve enough rest to get me to that pain-free state.

Did anyone else have to wait after their MVD to become pain-free? I need a little hope at this point. I know the day will come but am a little frustrated at the moment. Dr. Casey doesn't seem to be concerned (unlike me) and I will be checking in with him next week on my status.


Hi Marcelle! You are doing so well!! I know waiting for the nerve to heal can be discouraging and frustrating. I kept reminding myself that Dr Casey took the pressure off the nerve but the nerve still needed time to heal from the inside. I had many “basement days” sleeping, watching movies, sometimes just staring off into space…haha, but that’s what I needed. When I had visitors or went out to lunch with friends my pain would flare up. If you think of it like an injured nerve in your arm, of course it feels better if you rest it, but the more you move it, it flares up.

I think this is why my pain flared up when I started working because I talk so much at work. Its a slow process but hopefully soon you will start seeing a change. I thought the same thing, I can’t live a stress free life and never talk, but try to look at it as a temporary break.

You are really bouncing back from the surgery fast, which is awesome but probably makes it hard to sit around waiting for the nerve to calm down. Stay strong, I truly believe you are going to be pain free soon!!!

Hello, So glad your surgery went well. I had mine on Sept 4th. At the time I had finally reached good control on tegratol and Neurontin and vicoden. After the surgery I tapered off the Tegratol and then just quit the Neurontin. That may have been a mistake as now I am having a recurrence of pain in the same place. It is slightly different but much the same. Just made an appointment with my doc to go back on meds and to see if there are some different meds we can try.

With me -- no pain - till WEEK 11 --- devastation - thought life was over!!!!! Deep depression with low dose back on trileptal.... I was angry, scared, pissed, grrrrr.

12 weeks later after that - I got on a cruise - and got off my trileptal.....I had teeny pain.....

then a year of NO PAIN NO MEDS --- but then --- year two, this year, came back at 8:30 pm 3 nights per week at about a five to ten percent- livable --- patches no meds

THEN I had a stroke ---- and now at 1 to 0 percent ----- go figure ---- it took TWO full years, this month, for it all to settle down!

BUT, I did not shake, rattle or roll, my head or go dancing for months on end - I was afraid to shake it up.......now it was all worth it --- but biggest lessen, is that we are told best we might get at year one....nope, we are all so very different, it might take longer....please take it easy,

it was worth waiting for- patience, low impact, !

Thanks all of you for sharing your experiences. I'm also having a slightly different experience with pain. More of a pressure feeling that is easily triggered. I'm finding that stress is also doing it to me more and am not having an easy time being stress-free with my MIL and now mother here LOL. I think that I will be much more stress free when I resume my routine on my own but work in those naps. If I'm quite, mostly silent, no stress, relaxing, the TN goes away. It didn't behave this way before. I'm still on the full dose of meds though for now as the TN is too much to drop just yet.

It took me 8 months to get good pain relief.

Please take as much “basement” time as you need. This recovery is for the rest of your life. I have to keep reminding myself the same thing (9 weeks post MVD). Yesterday I carried my five month old grandson around for hours, I was so happy to feel his little body next to mine. I talked nonstop with my daughter and her friend…I was feeling great…until I wasn’t. Wham…
Now I’m remembering how bad it can get. We need to remind each other to go slow.

I had that pressure pain exercising, especially walking uphill, for about seven weeks, then it eased off.

Perhaps you could ask yourself what your goal is with the exercise right now. (I do remember that you are a fitness instructor.)

The foundation of recovery is rest and sleep. And for us, not talking too much. But oh my god, it is so hard not to talk. So hard not to be social. We need that contact for recovery too.

Keep Heart

Thank you, Bellalarke! That's exactly how I would describe my TN pain now - pressure - mainly my upper teeth. I don't seem to be having anymore "shocks", which is great, but it still hurts. The talking isn't bothering me now like it did last week but stress certainly makes it worse. I need to keep myself nice and calm and then it just seems better.

I've been doing very well in my recovery so far, now at 4 weeks. I made it through taking a 45min spin class yesterday with no problem but did purposely hold my heart rate back to 150 (I'm usually hitting 170 multiple times). It makes me so happy to be on that bike so I know that will help with my recovery. I'm sleeping 8-9 hours at night and taking a 1-2 hour nap. That's about 4 hours more than I usually get. Also, taking it easy watching some movies and reading, which I usually don't have time for. I'm very lucky to still having meals coming from friends and neighbors through next week so I can take that time I would normally be making dinner and nap or rest :).

Update now after 4 weeks . . . Really no surgery recovery left to do. My ear is all good, the incision has healed nicely and zero headaches. I only very occasionally have a pop in my ear and sometimes a pulling at the incision but no big deal. Good news too - I think my TN pain is finally exiting!! It has been so mile the last 2 1/2 days and very infrequent. It's like it is slowly fading out. Is that how it went for the others here when your TN pain finally went away? Did you just wake up one day and it was gone or did it fade away over days or a week?

Dr. Casey does want me to scale down all my activity, rest more, to allow the nerve to heal. I need to scale back my workouts to about 50% for the next 3 weeks or so to give that nerve the opportunity to fully heal. It's hard to do that when you are feeling much better and am a fitness fanatic like me. Just need to be patient, calm and relaxed - easier said than done LOL.

Hope everyone had a great Thanksgiving!!

Find something to replace the 50%…for now…this is your ONE chance to have a hand in how your outcome will be!

Mine went in and out of little remissions…back on meds at week 11…short while,lidocaine got me thru the rest ,ups and down at 5 % for 6 months, no pain for a year,3 months of teeny pain, THEN finally the remission at year 2, no patches, no meds,

Hi. I am new to this forum. I am from India. Today is the 10th day after my surgery. Got the stitches removed today. Its been a pleasing experience for me after the surgery. No side effects as such and the neuralgic pain is gone completely.

Glad to hear your pain is starting to fade. That’s how it happened for me…kind of gradual. Stress definitely affects it… My job has been very stressful and my right side ( not my operated side) has been horrible. Going to have to cut my hours a bit.

Keep relaxing, enjoy this time if you can!!

I'm glad to hear about your progress. I have been thinking about you.

All is well with me--14 months post op & no pain.

Hugs to all who read this.