I came out of my mvd wanting to be pain free (duh!) as well as share my experiences good or bad with everyone to give a realistic look at one person’s experience.
I’m nearing the end of my 6th week heading into 7 weeks post op and I can say it’s been a trip emotionally and physically thus far.
For those that remember in week 3 I had eliminated 2 out of 3 meds ( Baclofen & Dilantin) and had gotten down to 800mg Tegretol from 1600mg.
I have bilateral TN and still have TN1 on my right.
At 800mg my mvd side started with electric shocks that gained intensity over a period of a few days, so bad I couldn’t talk, eat or drink without the shocks going off. After a couple of days I decided to add back 2 pills of 200mg each so I am at 1200mg Tegretol and have had no more TN pain.
I will wait a little longer to try and wean down again, to allow more healing time.
I still feel my mvd was successful to date as before mvd the meds didn’t touch my pain! And now, I’m minus two medications and NO TN pain. : )
Last week I noticed the lower portion of my incision was infected, I received an antibiotic cream from my doc and it’s now healing well.
I have bursts of energy like the “old me” and it feels great! However I can just as quickly crash and need a nap stat! It’s been difficult finding that balance…
I fully expected at this point that I would have way more energy, so I’d be lying if I said I wasn’t disappointed.
My doctor gave me a bit of a plan in terms of what I’m allowed to do exercise wise. At this point I’m ok to walk everyday ( energy permitting) and try and increase my distance each day. At 8 weeks I can go on a treadmill and add a small incline. By 3 months post op I will be able to start upper body work outs.
Although I can go up and down my stairs here at home, last Sunday we went to the mall , parked on the roof, and when we returned to our car we took the stairs, double the amount I have at home. Half way up I could feel this pressure in my head, that’s my warning bell…too much! So I’m still trying to figure things out. I have had days this past week where I’ve had NO energy and needed to lie down all day. Ugh, I never anticipated that this far into recovery.
My doctor was really great about explaining everything and made sure I understood that I can still do damage to the healing process. This put things into perspective for me. I need to be more patient…ha!
Emotionally I find that my “house arrest” for the past year and a half due to my TN and all the feelings regarding that are coming to the surface now that the pain isn’t the focus. So I’m starting to journal and sort through some of that.
I’m finally allowing myself to think about the future …don’t know what that looks like yet, but baby steps.
The best gift so far ( aside from pain free days of course) was one day in week 5 my husband was staring at me with a great big smile. I was like "what?"
He said, " it’s just so nice to see your eyes sparkle again!"
His amazement and pure joy was a gift, to remember how far I’ve come despite all the uncertainties…
Hey Sparkles...thanks for the update...great exercise in patience..Sometimes, I think about having the surgery but since my meds work well (except I'm tired of being tired) I'm sticking with the med routine.(for now). I was feeling a little down today but your husband's comment lifted me out of that. TN can be so hard for those that care for us. So, kudos to Hubby. Reminds me of that old old song:
Mimi darling, great to hear your “good” points. Sad about the others, but a wise woman told me after life saving surgery 10 years ago, give yourself time to heal physically and mentally. She was spot on.
I have everything crossed for a complete recovery for you xx
Bill, I’d stick with the meds too until such time they no longer work, but hopefully you will have many years well managed!
Here in Canada we have a saying… " keep your stick on the ice!"
Love the song, ; ) it’s embedded now…I’m sure in a few hours I’ll be saying darn Bill, can’t get it out of my head! LoL
Jackie! You’ve been missed my friend, your friend was/is right! It’s just my patience that needs work!
It took me about 8 weeks post surgery to be pain free. My doc had told me I would be pain free before I left the hospital and that was not the case. I had recurring pain until the end of Oct 2012 and have been pain free since and med free since Dec. please keep the faith. I pray you’re eyes continue to sparkle.
I’ve been wondering about you so was really happy to find your detailed post on recovery. Especially the part about no TN pain! The sparkle in your eyes and the glimmer of a future after your long house arrest. Days of still needing to lie quietly when you want to find that new life must be so hard but you will get such a big payoff by taking it slowly. It’s not just the surgery you need to recover from, but also the trauma of all that daily pain and suffering, suffering, suffering. It is so much. But even though we haven’t “met”, I can read in your posts to others how strong you are, and you have so much willingness to help others. All of this will come back to you and in the weeks and months to come.
Peace and Joy in your recovery.
Keep journaling! You need to pour it all out now.
Oh Mimi, I must say that I am disappointed in your healing time. You are my inspiration and I have unrealistically placed you on a very high pedestal. I think this is because we have the same surgeon. I fully anticipated having surgery, waiting just a few weeks and then jumping, literally, back into my old life. I see now that this may not be the case. It is good that you are so honest with us and I appreciate it. I will have some time now to readjust my expectations of recovery time. The sparkle in your eyes must be a welcome gift for your husband and family. Even while dealing with the TN pain you have been such an inspiration. I can only imagine what a bright light you must be without the pain and medication. My apologies for the un-necessary pressure to hurry up and get better. I wish you a complete recovery.
Patty, thanks for your kind words!
I think my recovery is taking longer “energy” wise because of how I was living prior to my surgery. I stopped working ( long term disability though work insurance.) in Nov.2011 due to vertigo ( from the Tegretol) I went from being very active to nothing. I mean nothing. I put on 25lbs during that time.
So I was in my worst physical shape ever going in. I have muscle wasting in my legs from all my sitting/lying around. But with the vertigo and then the intense pain that did not let up, add in 2 extra meds well, I wasn’t able to do much cardio if any at all.
If you are active now and in reasonable good health then your recovery will be much quicker.
Surgery wise, Dr.K did an excellent job! You will be in such good hands! The healing part is all me. I need to lower my expectations because I wasn’t up to par to begin with.
Most people here are able to jump right in to their lives fairly quickly so I’m the minority…
The most important thing is No TN pain. (( hugs )) Mimi xx
I am glad and sad to here your recovery has been impacted by your house arrest prior to the surgery. I too have been under house arrest since the end of last November.this also completely due to vertigo and other side effects caused by the Carbamazepine. I started to gain weight when I included Baclofen with my Carb. My body, specifically legs, do not at all look like mine. So weird and so quick. I packed my suitcase for Florida about a week in advance and by the time I got there I could not fit into my white skinny jeans. It was down right scary who different my body was. I suspect that since I don’t do much more than hold down the couch and little puttering around the house I will also have a slower recovery. I am so looking forward to getting off these meds! I work, or rather I did work, in a high school with students who have a variety of issues in their lifes. Some are on medication and I will now have much more empathy for how they feel. I wish you a complete recovery. />
Mimi said:
Patty, thanks for your kind words! I think my recovery is taking longer “energy” wise because of how I was living prior to my surgery. I stopped working ( long term disability though work insurance.) in Nov.2011 due to vertigo ( from the Tegretol) I went from being very active to nothing. I mean nothing. I put on 25lbs during that time.
So I was in my worst physical shape ever going in. I have muscle wasting in my legs from all my sitting/lying around. But with the vertigo and then the intense pain that did not let up, add in 2 extra meds well, I wasn’t able to do much cardio if any at all.
If you are active now and in reasonable good health then your recovery will be much quicker.
Surgery wise, Dr.K did an excellent job! You will be in such good hands! The healing part is all me. I need to lower my expectations because I wasn’t up to par to begin with.
Most people here are able to jump right in to their lives fairly quickly so I’m the minority…
The most important thing is No TN pain. (( hugs )) Mimi xx
Thanks Rick, it must be almost a year for you right?
Your mvd story was one of the first I read on here. It was so great to read a first hand positive experience. Thanks for continuing to return to the site and help others!
Continued well being!!
(( hugs )) Mimi
Thanks Mimi. Yes, July 17 is my one year anniversary of having MVD surgery., No TN pain since and the residual numbness ( which was minor really) totally disappeared after a few months. I consider July 17, my 2nd Birthday.
I return here in the hope of helping others to realize there is hope for them. I didnt read many positive stories before I had my MVD. Since my story, I have read many more accounts of MVD success and am encouraged that others tell of their experiences so that others may benefit.
Best wishes for your continued recovery
Rick
Mimi said:
Thanks Rick, it must be almost a year for you right? Your mvd story was one of the first I read on here. It was so great to read a first hand positive experience. Thanks for continuing to return to the site and help others! Continued well being!! :) (( hugs )) Mimi
Mimi, thank you so much for being so willing to share your story. Sometimes we can be impatient with our bodies and expect them to do things in the way and time at we want them to do them. I had a back surgery a few years ago and I wanted to be done healing right away but my body needed time to fully recuperate and I just had to acknowledge that and give it time. Now I’m not sure that I will be saying the same thing once I have my MVD so please remind me of my words But honestly, give yourself the time and loving care that you need. My prayers and positive thoughts are with you.
Mimi,
I’ve been wondering how you’ve been. So happy your hubby is being to see you sparkle again. I recently had a brief painfree pd and my husband smiled and said it was so good to see me laughing with the kids again. I didn’t realize how long it had been. You are a strong lady, I think it is important to remember this disease had control of your body for a long time, but now you are back!! Give yourself the love, patience and kindness…and sleep…you so deserve!
Ohhh!!! I am so glad to hear I am not the only one that was in pathetically debilitating physical shape before surgery!!! I too was out of work (long term medical leave) and was unable to do ANYTHING for 2 months before surgery. I too gained weight and my muscle acuity has atrophied. (ugh!!!)
The recovery is indeed much harder if our bodies are so beat down before the surgery…we had ours at the same time (8 weeks post op now) and my energy is barely there, at best. I’m anticipating returning to work in the fall (I’m a culinary arts teacher with a classroom, full restaurant and app 100 high school kids to care for) but am not sure how I’m gonna realistically be able to do it! This disease and our experiences make us do some soul searching’, doesn’t it…
Whew! Glad you shared this - again, brings perspective to what each of us goes through and reminds us that we are NOT alone! Thanks Mimi!
Cris
Mimi said:
Patty, thanks for your kind words! I think my recovery is taking longer “energy” wise because of how I was living prior to my surgery. I stopped working ( long term disability though work insurance.) in Nov.2011 due to vertigo ( from the Tegretol) I went from being very active to nothing. I mean nothing. I put on 25lbs during that time.
So I was in my worst physical shape ever going in. I have muscle wasting in my legs from all my sitting/lying around. But with the vertigo and then the intense pain that did not let up, add in 2 extra meds well, I wasn’t able to do much cardio if any at all.
If you are active now and in reasonable good health then your recovery will be much quicker.
Surgery wise, Dr.K did an excellent job! You will be in such good hands! The healing part is all me. I need to lower my expectations because I wasn’t up to par to begin with.
Most people here are able to jump right in to their lives fairly quickly so I’m the minority…
The most important thing is No TN pain. (( hugs )) Mimi xx
Cris! Wow, you’re right, it’s comforting knowing you’re not alone…this low energy thing sucks, but I feel bad complaining because I’m so grateful to be pain free.
Patience has never been a virtue of mine!
To be perfectly honest in the far recesses of my mind I worry that the pain will return before the energy, and I won’t have been able to “live” a little you know?
In the meantime I use positive affirmations to get me through…
One day at a time.
Thanks Cris! (( hugs ))
But honestly, give yourself the time and loving care that you need. My prayers and positive thoughts are with you.