I am 5 weeks post MVD tomorrow, and while I'm so happy and thankful that most all of my TN pain is gone, I am really slow to recover from the surgery. My neck is so sore and stiff, and scalp still hurt and sting and ache from the incision. I swear I can feel the screws underneath, and those are such sore areas. And I get headaches and nausea at night a lot, but don't think I have a csf leak or anything like that. It's healed nicely, but it's the underneath that is so painful. Also, I'm so overly fatigued that I can only do around the house or walk for about 15-20 minutes before I have to rest, and I still require naps, and sometimes my eyes just close, and off I go. Also, my 11 yr old son and I have been blessed with an awful stomach bug, so you know those and brain surgery just don't mix....I have my follow-up apt next week and was scheduled to return to work after. I cannot see that this will be possible for me....I need more time have a desk job, it is high stress, and I find that it just all throbs when I get upset or have to yell downstairs to call on one of my kids. I do not regret having the surgery one bit, just think I'm a slow healer... Has anyone else taken a long time to recover from their MVD the way that I am?
Hi Proverbs,
My recovery from MVD this past April 9 was very slow…I could only walk up to 20 minutes by 4 months post op…as soon as I did too much I felt a pressure type “pain” in my head …
It upset me that my recovery was so slow in comparison with others BUT we all heal and recover differently.
Best advice I can give you is listen to your body,it knows best ! Don’t go back to work until YOU feel ready, the stress and discomfort will hinder your recovery and could even set you back.
(( hugs )) Mimi
Thank you Mimi! I am frustrated, and had a really bad anxiety attack this morning, followed by crying. My memory is a big problem, also....I wrapped 6 presents(2 each) for my 3 kids the other evening, and then couldn't even remember what I had wrapped. I like to keep a list of what I have bought, so as to keep the spending amount the same, and when I went to write them down, not even 20 minutes later, I could not remember a single thing I had wrapped up for them. Too embarrassed to tell my husband, I waited until he went to sleep after night shift, and then sat in front of the tree and unwrapped all of them, one by one, just to see what I had wrapped....wrote and checked them off this time though...I am having to keep a notebook for everything. And then I was on the phone with my mother also, the next evening, and my husband and boys arrived home from their basketball game, so I laid the phone down, and got up to go unlock the door, and forgot about the phone, and my mom...a few minutes later my mother calls my sons phone and tells him to tell me to hang up my phone. I had forgotten all about her. The list just keeps going and going. I am a banker, in sales, and new accounts, and have to be sharp and remember a lot...changes all of the time. I am so terrified that my memory will always be like this. Sorry to go on and on, just scared and frustrated :(
Take your time and like Mimi said you know your body best. My recovery was very, very slow and even after 16 months I have some issues. I have pain at the titanium mesh site, and I am working very closely with my neurologist with the headache problem and we finally had a break through with Botox injections after 16 months in combination with meds. I recently went back to the surgeon and he has never had a MVD patient with my "post surgical problems". Everyone is different.
I strongly recommend you tell you husband that you are having some "brain dumps" as well as the surgeon when you go back. Also let the surgeon know about the headaches and pain you have in the skull bone. He will and should be able to help you. Just make sure he hears what you are telling him. I learned that most of the time, my husband is my greatest asset at any of the doctor visits I have to make so that I do not forget anything. But, I have to keep him informed. Yesterday at the neurologist office, I forgot to mention that I had started to have anxiety issues -- my husband remembered and spoke up. It is all very important in the recovery process my dear!
Do not be scared......it is not an easy surgery but if it was successful it was well worth it. Just listen to your body during recovery.
Prayers and hugs.
Proverbs, my word recall and memory issues are severe too. Mine are attributed to the meds I take 1400mg Tegretol and currently 270mg of Dilantin .
It’s hard on my pride and causes small issues with family and friends.
My eldest daughter actually asked me last week to stop saying " you know I’m on meds" apparently I say this a lot to reinforce that my stupidity and memory issues are NOT me but the meds. She explained that she knows its the meds, i don’t need to keep saying it?!!
Apparently that drives them all crazy…
Oh the joys of TN…not.
Like Mary said, it’s important to keep your husband in the loop…you need support.
Thinking of you, Mimi
sorry to hear this and hope it starts to improve soon. have you ever watched the mvd surgery on youtube? the dr does his best not to move your brain around, but some of it cant be avoided. no two are the same either, so he may have had to cut a couple blood vesicles so that fogs that area for a while too. my hand shook a lot and still have a little tremor now at about 3.5 months out. i had to write stuff down at work too, i would take a measurement, climb down the ladder, and forget it. i got the time line of the post surgery all screwed up and my wife had to write it down for me, i sort of lost that month...but i get better everyday and i hope you will too. just stay the course and dont put your self on a strict time line as there is no rushing the recovery...period. it is weird as your mind clears though you will notice it is clearer, so hang in there you will be back!
I had a rough time with my MVD July 2011 and returned for I&D august 5. I returned to work in September, 2011. Don’t go back to work until you are ready. It was awful for me. I wound up retiring in march,2012. I returned in September 2012 but still don’t have stamina. I work 4 days a week. It is a very stressful job. I must say I am pissed that the neurosurgeon did not advise me to stay out of work longer
Hi,
I had the same sensations as you minus the nausea. My scalp was burning from how they shaved my head. My skull felt sore from the craniotomy. It seemed like half my skull was numb but I could still feel sore spots. Washing my hair was a process because it would hurt if someone touched even 5 inches away from the spot (it felt like they were poking the incision even though they were no where near it). Sometimes it can take a long time to recover from the anesthesia (being tired after only doing a small activity). I would walk to the mailbox and have to take a nap after. Even weeks later I would need to take naps after doing stuff. The sensitivity will go away in time. I had my MVD Aug 15, 2013 and still have a numb/painful ear.
Best of luck