I’m ten weeks out my second MVD (bilateral TN). I thought I would be stronger by now but am just dragging through each day. Anyone have issues coping post surgery? Any advice? Thanks
After my MVD last year Lee, my recovery took forever in terms of strength and weakness, for me it took a good 3-4 months before I felt my energy pick up. Several of us here had MVDs at the same time and were recovering quicker…what was wrong with me? Well, nothing. We’re each individual and different…my doctor simply told me to not be do hard on myself and just listen to my body…set smaller goals and gradually increase them.
( I too have bilateral TN)
Hope you’re feeling no pain, continued well being …
Mimi
Thank you! I’m sorry you have it like me. Surgery ok still having some pain etc. just hard to cope alone.
Lee
I had my first MVD July 10 and have been dragging and feeling extremely emotional. My surgeon says this is normal and that it will just take time. I keep going in hopes that "tomorrow" will be better.
My first mvd was two years ago on right side. Second was 23 June this year on left side. I don’t remember much from first time - I’ve git big lapses in both short n long term memory. Doctors pat me on shoulder and say I’m doing ok but I don’t feel ok. I cry almost every day for who knows why. I’m really anxious too-can’t sleep much. Which side was your mvd and how are you other than emotional like me? Thanks for sharing, it’s a lonely road and I’m grateful that you understand. Lee
My MVD was on the right side. I've been having memory issues as well, however this forum is the first place I've spoke about the issue. If someone asks about 'remember when' I just say I don't remember or play along with what they are talking about. The issue with this comes to anything work related. I've also been told by the doctor that I am doing ok and making progress, however I don't feel ok. I cry and feel on edge all the time, like a woman on the verge! I've spoken with my surgeon about this and was told this is normal and that it could get worse before it gets better. I have horrible insomnia. The surgeon won't give me anything to help me sleep----he said the brain is still resetting itself and all the meds I was on plays a part in sleeping or not sleeping. If after a few months I still have problems with sleeping they will look into giving me something to help. Until that time I refrain from doing any online shopping late at night so I don't go broke!! Had to throw in something funny since I'm starting to tear as I type this! I get exhausted doing what I believe are simple things. We had friends over (two people and a dog) and I was exhausted and ready to lie down after two hours of them being at my house. I seem to do better being at someone else's house than playing host in my own home. I am also unable to make it through a whole grocery trip. I can get through a few aisles and then I have to sit down while someone else finishes getting groceries. I was told this is normal and to give it time. I just realized that I am going on and don't mean to have over shared how blah I feel after all these weeks of trying to heal. I am so grateful that you understand. This is a very lonely road. Jeanie
Jeanie!!! We are one and the same!! I feel sooo awful that I can’t remember and I can’t do the grocery store alone! I feel so tired and fragile almost all the time. Today I made a casserole and then had to rest. I feel like a shadow. I keep hoping I will finally sleep and when I wake up it will be over. Uggghhhh !! I’m sorry for you but I’m glad it’s not just me. Gentle hug to you. Lee
Hi Lee,
It’s sounds as if you having a really hard time, keep communicating - we are all here for you. I’m due for my MVD next week. I’ve had a previous major surgery and I can remember crying a lot, feeling a huge cloud of darkness over me - it does lift very slowly… But it will lift. Do something nice for yourself every day - bath, read, cup of tea at a friends, library trip… Hope this helps.
Victoria
Hang tough …this is part of the healing process. I suffered greatly for 6 months. Every day gets a bit better
Lee, I feel the same. I’m sorry for you but I’m glad to read it’s not just me. After reading many discussions on how better people felt by this point, I was beginning to think something was wrong with me, even though the doctor kept telling me everything I was feeling was normal. We can do this! {{hugs}}. Jeanie
Please don’t push yourself. I push and ended up in worse shape
Hang tough!
Please do not rush your recovery. It gets better. I think everyone on this site knows my recovery was horrible, yet after many difficult months I got way better. You have been through hell...Pleaser take it slow and steady. I had months of fatigue and complications. It does get better. I have you in my thoughts and prayers...
~E
So glad I found this discussion. My MVD was on Sept. 2nd, dealing with mild headaches and achy joints. After my surgery I was placed back on 600 mg of Tegretol. I went off the Oxcarbemezapine 900 mg and the 900 mg of Neurontin. I had been on both Meds for quite some time. Could some of this be medication withdrawal? I break out in sweats, fatigue easily and get way too emotional. I made the bed and sat in the chair twice. I guess it is different for all of us. I will be mindful and be kinder to myself. After reading these posts, took a shower, hopped in jammies and went to bed. Thank you all. Oh I find the pillow I use on airplanes that wraps around my head gives me more support in bed, when my neck gets achy.
Lou I’m sure it could be meds but I’m still having the issues you are and I’m not on or been on those. I think a lot of it is just post surgical. I use ice on my aches- and have been going to physical therapy for my neck as well. Best of luck to you!
I’m sorry to read this, but relieved at the same time. I am 4 weeks post-op for MVD and have ZERO energy! I can not sit up for more than 30 mins. All I want to do is lay in bed and be comfortable. I’m so grateful to no longer be in pain, but was not at all expecting to feel this bad-even at 4 weeks. Now I’m seeing this may be normal, and that gives me some hope. I can’t make it through a grocery store trip and the smallest things exhaust me…like checking the mail. Thank you for sharing your story. I hope you are doing better now!
Danielle
I am also wondering if some of my sluggishness and lack of energy is from coming off of all of the meds. I was on 450mg Lyrica & Carbetrol for months and just weaned off last week. Someone else mentioned being a shadow of themself, I feel exactly like that. I am so happy I reread this discussion, because it is a gentle reminder to not be so hard on myself. I am 4 weeks post-op from MVD. I am wondering how you are doing now?
Thank you,
Danielle
Lou said:
So glad I found this discussion. My MVD was on Sept. 2nd, dealing with mild headaches and achy joints. After my surgery I was placed back on 600 mg of Tegretol. I went off the Oxcarbemezapine 900 mg and the 900 mg of Neurontin. I had been on both Meds for quite some time. Could some of this be medication withdrawal? I break out in sweats, fatigue easily and get way too emotional. I made the bed and sat in the chair twice. I guess it is different for all of us. I will be mindful and be kinder to myself. After reading these posts, took a shower, hopped in jammies and went to bed. Thank you all. Oh I find the pillow I use on airplanes that wraps around my head gives me more support in bed, when my neck gets achy.