My MVD was 4 weeks ago yesterday and I want so much to post an "I am doing great update", but I am still undecided. I am feeling much more energy this week, more like myself and have to remember not to over do it. My ear ache and fluid feeling is gone. I caught a case of strep throat during week two and that was awful to deal with the sickness and surgical side effects. The urgent care doctor put me on penicillin and I was much better in a couple of days. That is the same time my ear ache got better, so I wonder if the medication helped with that. End of week two beginning of week three was great, pain-wise, no TN pain, I had very little ear pain, very little teeth pain and I was completely weened off of all anti-seizure medication, still took percocet at night and ibuprofen during the day. I was still light-headed and had low energy but my spirit was high and I was sure this journey of pain was over. At some point during my very sleepy and not feeling so well time I forgot to take my anti-depressant several times and decided, while I was getting off everything else I may as well stop that also. I have been taking it for depression, not pain relief, for many years. That was a really, really bad idea! End of week three and first of week four my teeth pain came back full force and then the deep stabbing pain and pressure in my cheek. I have to stop right here and say it is not the horrible stabbing pain that would stop me in my tracks and cause me to cry and shake (which is absolutely a blessing!) But it is pain, it is in the same place on my face and it frustrates and scares me! So I am in pain again, I have been basically home bound and have little energy, and my depression gets me. I start to feel very sad, stop responding to friends and family, stay in my room and cry easily for a few days. So my husband and kids take me out for dinner and a drive to cheer me up. My husband and I talk and decided I better start the anti-depressants back and not mess with that right now. I have been back on those for a few days and feeling better. I am managing my face and tooth pain with ibuprofen and Tylenol. My surgeon says it is normal to feel some pain but not to the same intensity for a while. My husband says with everything I have just been through (brain surgery) I need to be patient and have faith that the surgery has been successful and this will go away in time. I do feel hopeful that I will be able to make our kids school presidential inauguration trip in January. I feel so much more energy and think with a couple more weeks I will be able to keep up. I am grateful for a supportive family. I am so grateful for the support of this site, I am so much more prepared to make the decisions that I have in my treatment. I still have hope that this is was my miracle and soon my pain will go away or at least be bearable without any type of pain medication. My mind is so much more clear since getting off the anti-seizure medication. I know I am less tired even after surgery. My tongue and cheek get tingly and numb especially after eating, which a is funny feeling but not painful in anyway. The surgical incision is stiff and stings a bit if I have been moving around alot, but still not bad at all. I even have a bit of hair growth and my scar is very hidden, nobody would ever know I had brain surgery. So on I go to week five, heading into a new year and hopefully a trip to Washington DC! Thanks to everyone who posts updates and experiences, Take Care!
Good luck to you. I hope all your pain will be gone soon.
Hi! Your post is honest and strong, thank you for posting! I’m considering MVD, I know its not perfect, but it really is a good solution. I hope that every day is better for you, then pretty soon, you will be 6 mo post op, and you will be feeling great! Keep writing!
AlyssaBella,
Thinking of you and hope you continue to get better and stronger. Glad to hear you are starting to feel more like yourself and you have support. Please be gentle with yourself and best wishes for TN freedom.
Thank you for the support! We have had several large snow storms this week and it has been extremely cold, I wonder if this is the reason for my increased pain? Barametric changes and cold weather were always harder on me before. Feeling more optimistic today:)
Hi AlyssaBella,
So glad to read your update, the good, the bad and the hope!
I pray with time your pain lessons, I look forward to the day when I can get off all these meds and feel clearer in my mind. Continued healing, rest, rest and more rest ! Take good care of you, and keep posting to update how you’re making out.
Huge (((( hugs )))), Mimi
PS. I’m sensitive to barometric changes too, so it could very well be that. I’ve also been told, it takes time for the nerve to heal…
Oh Sweetie I feel your pain, I have bronchitis now , and an eye infection and my house flooded. I havent even celebrated Christmas with my family yet because I have been sick..aiming for next week on that. My point is, I have had one heck of a time since my surgery on October 3rd (mvd). I was sick to my stomach for 18 hours after surgery (allergic to anesthesia) I got Thrush from my allergies to antibiotics, I had a skin rash and I had fluid in my ears. I also had the pain worse than before the surgery ( all type II). It has been a road from hell, but hopefully next year will be better. I am optimistic and you should be to.
I think the pain you are feeling is normal for those of us with ATN, mine got much worse after surgery, especially the teeth, but now after a couple of months it is almost all gone. I have an occasional twinge, but not much else. I do still have some of the boring ear pain, so I have stayed on the antidepressant for now since that keeps it at bay. I figure if I have to take it, but can lead a normal life, the so be it. Anything is better than the pain before surgery. I think you will see a dramatic drop in pain after about a month...thats when it really kicked in for me and I could finally stop freaking out.
Wendy
Thanks for sharing your experience, i am still trying to decide between the MVD and gamma,
You are in my thoughts and I hope you soon feel better. That was a good idea to go back on the antidepressant, I think. It sounds like your family is supportive and they want to help you feel better. Take care of yourself.
Dixie
John there is an excellent video on the Johns Hopkins website for TN by Dr. Michael Lim, I had to watch it before I went for the consult with Dr. Lim. It goes over all the percentages etc for each proceedure for TN. I found it very effective in helping me decide to have an MVD over Gamma, not that it would be the same for you, but I think it really gives you a great idea on which way to go. I can send a link if you wish
Wendy
John said:
Thanks for sharing your experience, i am still trying to decide between the MVD and gamma,
Thanks, I have seen the presentationand the MVD seems like the way to go, but I know a lady that had the Gamma over 15 years ago and has had no problems since.
crashgirl said:
John there is an excellent video on the Johns Hopkins website for TN by Dr. Michael Lim, I had to watch it before I went for the consult with Dr. Lim. It goes over all the percentages etc for each proceedure for TN. I found it very effective in helping me decide to have an MVD over Gamma, not that it would be the same for you, but I think it really gives you a great idea on which way to go. I can send a link if you wish
Wendy
John said:Thanks for sharing your experience, i am still trying to decide between the MVD and gamma,