Thought I would post an update for those of you who have been following my journey…
It’s been 20 days since my surgery, my 1st and 2nd week post op went really well. No TN pain, just a lot of nausea, insomnia and different aches and minor pain all over my head and neck from the actual surgery. I also had the ear fullness which limits your hearing and feels like you have an ear full of water. That was really uncomfortable and mostly annoying.
Week 3 has been a bit of a struggle. By the end of week 2 my meds were drastically reduced. I believe this is playing a part in how Im feeling as well.
I started getting a wee bit of TN pain within my ear as well as in my lower teeth.
Nothing crazy, just enough to be uncomfortable. 1-2/10 on a pain scale.
My energy dropped and I spent most of last week lying around.
The ear fullness finally went away a few days ago and that was such a relief, I felt more balanced.
The last 4 days I’ve been at 800 mg Tegretol XR only, as I still have TN1 on my right side. However since I took the last of the Baclofen and Dilantin I have been having electric shocks on my mvd side ( left side).
I would say 6-8/10 pain levels. NOT FUN. It’s been triggered by drinking, eating or talking. Last night I added another 200mg Tegretol hope to see that extra dose help in the next 2 days.
Also feels like a nerve pain in front of my ear along my cheek. I’ve been using emla cream it’s a lidocaine mix over the counter and it works within minutes and has been a blessing!
Funny enough I’m not discouraged, I remain hopeful that this current TN pain is a result of coming of the meds and from the healing of the nerve. If this is as good as its going to get, then so be it BUT for right now, I choose to believe I’m just healing…
Only time will tell … It’s early days yet.
My incision is healing nicely, I will attach a pic that was taken a few days ago. To see my incision a day or 2 post op just head to my photos on my page.
My goal for this week is to get out and start walking. All this lying around is getting old fast! BUT I’m listening to my body and that’s the best thing I suppose.
Hi Mimi
Thanks for the update. Every day I wonder how you’re doing and include you in my aspirations for healing and happiness. Your incision looks like it’s healing very nicely. It’s great to be optimistic and will be a big part of your successful healing. I’m with you on that and am betting that by the six week mark a lot will be settled down. You will feel wonderful when you get out for a walk. Take it slow! (But you know that:-)
Big Hugs from the Coast
Bellalarke
First let me say Happy Birthday.Im sorry your having these issues post MVD.It takes all we have to get to where you are and still issues.I wish you nothing but success Better days ahead!!...I read you had your surgery in Winnipeg and Kaufman did the MVD.Back in 2009 My wife contacted Kaufman first as he was the best Neurosurgeon in Canada ofcourse he wanted us to send copies of MRI and any test conclusions.Then we found out about Tymianski at Torontos Western who would at that time be considered #2 Neurosurgeon in Canada.So we researched him to no end 400 MVD surgeries before performing mine.Because of close proximity to where we live we chose Tymianski.In a sence it is a small world we live in.I guess why im responding to this is ofcourse to wish you the very best and nothing but the very best outcome.But also for any other members who might read.It is very important to research research research every aspect of this terrible disorder and make good concious decisions.And if your doubtful do it all over again.Mimi you will be in my prayers I hope things get alot better soon for you.God Bless :)
Thanks Bella, walking will have to wait, would you believe its snowing here today?
Got to love Alberta weather, not!
Besides, the shocks are terrible today, no eating or drinking, well small sips. So I’m just resting.
Brian, thanks for the bday wishes, and encouragement as well.
Yes, I’ve heard of Dr. Tymianski, through my research. Dr. Kaufmann was great and lived up to his reputation, we’re very lucky to have a few top neurosurgeons in Canada. There’s also Dr. Honey in Vancouver. I have no regrets, as I said its still early days…for now I lie on my couch watching an old Grace Kelly Bing Crosby movie, “High Society” one of my favorites.
Heating pad along the side of my face and my oldest daughter keeping me company.
Life is good.
Oh Mimi, what a drag about the snow. Yup, you gotta love Alberta…that weather burned into my memory. I remember going to Edmonton from Calgary in 1989 on the May Long Weekend in a snowstorm…
Really sorry to hear you are having terrible shocks today, perhaps weather related? That front moved through here on Saturday and it was bad for me.
Wonderful your daughter is there to keep you company. Hope the shocks settle down soon. (I guess they’re like “aftershocks”…) it’s still early days for you.
Xoxo Bellalarke
Mimi thank you for this update. I also had some of the same symtoms after my Gamma knife. Ear pressure and pain. The odd similarity, considering we had two totally different procedures done is the nerve pain in the front of he eàr into the cheek. It had also been tender to the touch. I am 6 wks out and it had lessened. If I feel it I drop my jaw and pull it slightly back. Weird but it helps. I also agree that the nerve is going through some changes, hence some of the old pain comes back or we experience new pain which can be scary. I also believe that I am healing and this had been my saving grace. Think of you daily and pray for a positive outcome.
Thanks so much for the update. I hope your healing continues and that the nerve settles down. We have to have faith that we have made the best decision in regards to our health. I tried to reduce my Bacolfen last week but was almost immediately reminded that this was not a good idea. The weather, anticipation of upcoming MVD, and other stressors mean that it is necessary to maintain medications. I guess as long as you have less pain and have the hope of the nerve settling down the future continues to look bright. You are wise and intuitive and know exactly what to do. Enjoy the birthday wishes and celebrations! Cheers!
Mimi, you have a super positive attitude and it's very inspiring. It's also really a generous gesture that you're sharing your experience so openly and completely. While the only thing I've really been able to ascertain about TN is that it seems to affect everyone differently and peoples' responses to medications and treatments vary widely, reading how you deal with it, what you do when pain levels change, etc. really helps me.
Thank you for sharing and I wish you continued progress and success post-MVD.
Sorry to hear your having some zings after surgery. Sometimes its the nerve actually waking up and will take abit of time to heal. It does take awhile for nerves to bounce back after decompression. Maybe its just that. I remain on tegretol post op for the left side and then right side began and increase was started. You have to give it time they say at least a year. It seems long but it truely makes sense. Its all a work in progress if healing. Go slow when your body tells you too. If the weather is nice take a nice walk for a 20minutes or so, might make you feel better. Keep gurarded not to go too fast. Its only been 20days. Maybe coming off meds completely may not come as soon after all you do have TN on the other side. I knkw you will do fine Mimi. Keep posting your progress.
Thank you all so much for your replies and kind words.
Yesterday was the horrid shocks, today just the one lower tooth pain.
This tooth was investigated in December by my dentist, and although he noticed sensitivity he saw nothing wrong with the tooth, even took X-rays. All looked good.
This really makes me think that it’s all the nerve pain travelling while healing.
It’s the only thing that makes any sense to me.
My goal for walking is postponed, I’m just too tired.
And that’s ok, Tomorrow is another day.
I was sorry to hear yesterday that you were having shocks but am hoping for you that the nerve will settle down soon.
I did have a tooth that gave me some pain a few weeks after surgery but it is fine now. For me it has been 4 1/2 months since my MVD and I am pain free. If only I could be free of the fear of recurrence. You seem to have such a great spirit in spite of your pain. May you see a complete end to it soon.
Mimi, I can understand the confusion regarding the phantom tooth pain, something I keep battling with trying to make some sense from. Tooth sensitivity is something that really confuses me, my Dentist has always said I suffer tooth hypersensitivity................. ?
Since your MVD surgery, does eating and drinking set off the tooth pain, does the pain travel, does it cross and hurt both sides ?
Thx Mimik, appreciate it. Hope mine is like yours!
Wes, I have bilateral TN, my right side (TN1)is managed at 800mg Tegretol. It’s been quiet since its return out of remission 2010.
My left side (TN1&2) where I had mvd, had been in remission for 10 yrs until spring 2012, it progressively got worse and worse. Med resistant, therefore the mvd.
First 2 weeks after mvd completely pain free. However NS wanted to reduce my meds…understandably they weren’t working pre mvd and they were at high levels.
I really feel that the mvd has worked.
Keeping in mind that “worked” for me means able to reduce meds from high levels and reduce my TN pain by half.
These TN “episodes” that I have been experiencing I think are a result of the actual mvd process, removing all the offending vessels from pulsating against my nerve. I have not seen the surgical report yet so I don’t know what if any damage was found with my nerve.
The meds also come into play , by removing most of them I feel my nerve has gone into shock!
Like… " hey where did those vessels go?" “Where did those funky meds go to calm me down?” Insert my nerve screaming here…; )
At least that is what I hope is happening…either way I’m at 1000mg Tegretol now and taking one day at a time…
It’s too early for me to say mvd failed OR mvd was successful.
Mimi xx
