I had Gamma Knife back in June of this year and have gotten worse ever since. TN is on left side of face, shingles outbreak occurred 2 weeks after gamma knife on opposite side of head...ever since, I've not gotten much better. I'm a professor at a University and am about to make a decision to take a leave of absence for spring semester if things do not improve. I've lost weight, I'm emotional every time I talk about my health (oh, I've been a Type I, Insulin dependent diabetic for 28 years now (I'm currently 35)---fortunately, my diabetes has been under control through all of this. My biggest thing for the last couple months that's getting worse is swelling on the entire left side of head (where TN is located---I have in all 3 branches). The swelling isn't just where gamma rays went in---rather, it is above eye brow, under nose, cheeks, AND where rays went in. I see another neurosurgeon next Friday (a week from now) to talk about options as I can't live like this and need/want my life back. Anyone else experience swelling---again, not just where gamma rays went in but other places as well on face/head? I wouldn't care about the swelling itself but the swelling/pressure causes my TN to act up (which doesn't go away...it is ALWAYS there...nothing periodic like some others experience), plus is giving me a headache. Dr's have tried steroids but nothing helps. HELP! ADVICE? I'm getting so depressed and feel like sleeping more than anything else as that is the ONLY time I feel "good".
That sounds terrible,im so sorry.My Gamma Knife in July was successful and i don't think i had any swelling.What did the Neuro or Dr. that did the procedure say?I know they can do it twice if needed.I hope you get some helpful comments here and find some relief soon.
Hi! Just my thoughts of course. Taking a leave of absence if the pain continues sounds like a very needed option at this point. You are under incredible stress with the recent shingles and gamma knife. I know TN is awful but when it gets tangled up in stress I think trying to decipher symptoms will be difficult. I also tried to keep my husband from saying things like "it can't get worse than this" or "we need our life back". After reading some of the discussions on this forum I know, yes it can get worse and yes we may have to live like this. This was somehow oddly comforting to me... yes, it is this bad, yes it can get worse. Because it allowed me/ forced me to live moment by moment. Where I begin to get simple satisfaction from drinking a full glass of water with a straw because I knew I was getting a little hydration for the day and that my life literally depended on that. I think going on a leave of absence will let you just focus on yourself. Pain is incredible in the way it operates and focuses us like nothing else. It sounds like a lot of things are going on with you simultaneously. Really make sure you are getting good hydration, plenty of rest and really good nutrition. Really think of this as a "healing time". Some walks in the fresh air if you can stand it. Keep talking with us on this forum and as well, answer others postings. This will keep you approaching your own life in a creative manner. Maybe share with your faculty head that you might have to take a leave of absence if things don't improve by x date in the future. Sometimes just getting things off your chest will relieve the stress and maybe you won't have to take the leave. Use the creative and intellectual skills that got your through your education by maybe starting a journal on all the aspects of your symptoms. Just some ideas that have come to my mind. Sending you peace and healing. Tina
Wish I had some advice, but the only thing I can think of is to call the neurosurgeon to see if you can get in ASAP!!! Or even just show up there or at the emergency room. It's hard for me impose like that, but sometimes you just have to do it. I'm sure you have already thought of this.... but sometimes hearing it from another person helps.
I had GK in February and right away started getting strange headaches almost everyday. So then back to a neurologist who thought acupuncture was a good idea so that's what I did. Well that went very wrong as well and actually started a major flare up. So round and around I still go. I also had popping in my ear on the same side as the GK, which I figure was just a minor issue. Oh, no not exactly seems the GK did something to the muscles in my left ear. So funny things can happen with GK, for sure never would have dreamed the ear popping was related!
I really feel for you! It's hard enough to deal with all this and then get excited that the next procedure will work only to leave you worse off. It's a very depressing feeling, but you do have the next appointment. I'm in the same boat with another appointment on the 12th. For sure you want your life back and I totally get it. I will say that this site has so much information that it has already starting changing the tides for me. Search the GK topics and maybe you will find someone who has had swelling issues with GK.
I hope you feel better soon. All the best!
I have not much advice…BUT please make sure your neurosurgeon is on our doctors list…or in the top of the TN field… Studies show now that MVD is better in many patients for long term.
Immediately call your primary and ask for lidocaine face patches called in right now
and see if you get some relief from that before you take leave of absence…
Let us know what happens next!
Thanks for the advice about the patches. However, they do not work for me. have tried MANY, MANY, MANY, MANY times. I have the patches and the cream. Both prescription.
I have the same problem. When I get pain it’s very intense and never lets up. Not for one second! My last attack was 2 days ago and lasted 65 hours. During that time I couldn’t eat or sleep. I very new to this and have been on this site constantly for some info, support and help. Your the first person that I read that had constant pain like me. Does anyone know if hemp oil works? I read something about that.
Ohhhh my…look on first discussion page at top where my icon is… Meds list… Many there are for PRN…or go to ER , or both!
Not sure where you are talking about---"Meds list" where your icon is. Can you be a little more specific? THANKS!!!!!!
Kc Dancer Kc said:
Ohhhh my....look on first discussion page at top where my icon is..... Meds list..... Many there are for PRN.....or go to ER , or both!