Hi friends! I'm writing because I'm scared and don't know if I'm experiencing normal symptoms after my MVD for GN. I had my surgery 2 weeks ago tomorrow. At first I was doing mostly well, with slightly more than the expected pain and the pain in my ear much diminished. Last week I was running a slight fever, but my surgeon said it was nothing to worry about. This weekend my pain has increased dramatically. I feel as though I am being punched in the back of the head repeatedly, the base of my neck is killing me, my jaw has shifted to where I can't completely close my mouth and drool when I drink, the right side of my face where the GN was (is?) feels slightly numb but also shifted so my right eye won't close all the way, and worst of all the GN pain in my ear has jumped right back up to the 10 level it used to be at constantly. I don't know if it's fear, panic or pain but I'm also very nauseous. I do not have a fever and my incision looks good, according to the doctor. I also have TMJ and have not been wearing my splint since it was vastly uncomfortable after surgery. I assume that may account for some of my jaw shifting.
I'll see my surgeon tomorrow to get all 27 staples out, but in the meantime I'm scared, tired and I hurt badly. I'm on enough pain meds to knock out a person twice my size, but I feel like screaming in pain. Did I try to do to much too soon and now I'm paying for it? My doctor said I could get out of bed when I felt comfortable, so when I felt somewhat human last week I washed dishes and made cupcakes. I did leave a message for his nurse earlier, so I'm assuming if anything sounded too serious I would have received a call back, however I would appreciate hearing from anyone in the group before tomorrow. Thanks so much and be well.
Hi! I can only offer support- what you are describing would definitely have me on the phone to the Surgeon. I have heard that symptoms can get worse before they get better. I am hoping that you feel better quickly! Having the staples out will definitely help!!
Keep us posted!
Tiffanie
Rue Ann,
Definitely push your surgeon for answers to your symptoms above… As tiffanie said, it sometimes gets worse before it gets better, but it’s important to question everything as you never know if something else is going on.
I hope things get better soon, please let us know what your NS’s opinion is.
Thinking of you, (( hugs )) Mimi
I would be concerned. Did your symptoms worsen in relation to coming off the steroids? That happened to me. I had to go back on brain swell meds for another 2 weeks.
Something sounds real wrong with your face and possibly it is as a result of the surgery. Most likely it is in my opinion, but I’m just a regular person, no credentials to back up my opinion. Get to a doctor asap. What is going on needs immediate attention. I have never heard of a result like yours. Second opinions are in order if your surgeon doesn’t satisfy you with an answer.
Thank you to everyone who responded to this. The good news is my staples are out, the incision healed well and I'm recovering from MVD well. My neurosurgeon said that I have Bell's Palsy on the right side, the side the GN was on. I was not put on steroids after surgery, but he has given me steroids now to try to improve this. My right eye will only close with much force and my smile looks like a grimmace. The pain in my ear, neck and head is very intense. I am still really scared. Does anyone else have Bell's Palsy and TN and GN? I've just started researching it. Is it possible that since my neurosurgeon did not find any compressions during my MVD that all I have is Bell's Palsy? That's an incredibly disturbing thought. Please send any info you feel like sharing or advice. I've lived with Cerebral Palsy my entire life, but hearing about yet another health problem today when I was just starting to feel slightly more human has sent me into a dark depression.
Wow, my thoughts and prayers are with you. Stay strong, you can keep moving forward, every day, a little at a time. My Aunt (no TN or any issues) woke one morning with Bells Palsey affecting half her face. She did go try acupuncture, and noticed a rapid improvement. Is not 100%. But fantastic results.
You can pull through these challenges!!
Tiffanie
I know this sounds ridiculous but when I had my nerves severed as a result of ATN I had the same..my right hand side of my face fell...and also this incredible numb pain...which I now know to be AD.....I heard that Botox can help with bringing the face back in line...I was like you...drooling....eye drooped....mouth drooped...(.matched my stomach and boobs let me tell you...and that was not a good thing...)..anyway...I do not live far from Marbella in Spain...so off I troop to the local botox expert...and incredibly it worked.....I didnt feel a thing.....mind you I was numb anyway.....also my NS said to do facial exercises everyday.....so instead of looking like Quasimodo on a bad day...I actually look ok now...you would not notice any difference from the pre op days.....Its on the inside I am screaming with pain....maybe If Id left the Quasimodo look people would realise how I suffer daily....try it.....It cant hurt...keep strong...I know how you feel and my heart goes out to you...and others that have been through this scenario xxxxxxx
Hi RueAnn,
I’m glad you are on steroids and hope this helps with the Bells Palsy symptoms you’re experiencing. It could be that it wasn’t GN but BP all along but you’re Neurosurgeon would have a better opinion on that. Those dumb nerves are so close together, he’s been inside and must know if he looked at your 5th,7th cranial nerves. I don’t know very much about BP, but from the little I know many people find relief of symptoms within weeks to a few months.
Read as much as you can, and definitely ask your NS all questions pertaining to your MVD .
Big ((( hugs ))), I hope you’re pain eases up. Mimi
I plan on trying Botox and acupuncture - thanks so much for the suggestions! My terror at the moment is what of I did not have GN at all? What if it was just Bell's Palsy? Did I just go through brain surgery for nothing? My NS said he found no compression, so he massaged the nerves as they often do with TN. I keep thinking, "If there was no compression does that means there was no GN?" I have another appointment in two weeks. I was so shocked by getting yet another diagnosis yesterday that I didn't have all my questions clear. I was supposed to be getting better, not be this much worse. I feel like crying constantly. My youngest has an ear infection, my husband is overwhelmed with taking care of the kids and I want to hide until I no longer look and feel like a monster.
RueAnn! Sending hugs to you and your family. Are there any local friends/coworkers/church or temple/neighbors that can lend a hand? You and your Husband truly need extra backup so that you can breathe and focus on treatment options for you. Put the word out that your family needs some extra support. You are the second “Forum Friend” that I have heard is being tested, over and above the already stretched limits. You can get through this. Doctors need to rise to the challenge and get your head figured out!! I’ll be praying for good solutions and healing for you.
Tiffanie