I just do t know what is the right decision anymore. I have been so upset and now just feel so hopeless about this whole situation. I honestly have felt like if I had a choice I’d let someone help me pull the trigger!
This all started for me about a year and a half ago and I feel horrible that I even complain because many of you have suffered so much longer. After the neurologist in my hometown didn’t know what else to do with me and the neurosurgeon here didn’t feel “comfortable” with my condition I was sent to Dallas to see a whole new team of docs. I was hoping to finally get some relief. They gave me the options of Gamma Knife or Balloon Rhitzotomy. I chose the Rhitzotomy because I had heard it had better results. It helped me about 50% but I was still having this excruciating pain down in my left jaw and what I describe as wrenching stabbing ear pain but my ear is fine according to ENT. So I am told I have more ATN than of what’s “True” TN and they have no idea of what’s causing my pain or where it’s coming from. So I was sent to pain management to try some nerve blocks. This dr Had a lack of knowledge that frightened me! At first was scheduled to have a less occipital nerve block then she realized after looking at my chart again and listening to what I said that this nerve block wouldn’t work for me. Then, in front of me and my husband, she was googling my type of pain and causes and suggested maybe doing a Mandibular Nerve Block and then when showing me another pic off of google and me asking her, “what about this area” she was like oh ya I forgot about that area we can do that instead. Which had to do with the Superficial cervical flexes. At this point I am livid because I have to drive 6 hours to go to these appts and she just wasted my time and money AND I had return home still in horrible pain. I don’t know where to go from here. I hate the meds and the affects on me. My body is so sensitive to them all that I am always exhausted and can’t think clearly. I can’t work. My job is so stressful but I love it so much but I can’t handle the stress load anymore. So what’s next? I know neurosurgeon told me that if injections didn’t help then he suggested cutting the nerve?? Well I’ve heard good and bad and frankly I just want it all to go away. I know all of u understand and I’m ranting but I’m in tears writing this. Oh how I wish life could just be normal again…
OH, Nikki! I am so very sorry you are suffering so much!! My heart hurts for you!
I don't know that I really have any advice for you, as I am still trying to figure this all out myself. I have definitely been in a major crisis lately. All I know is that you have to keep fighting, keep trying new doctors, new meds, procedures, etc. until you find something that helps.
I think cutting the nerve is pretty drastic and should be the very last resort. Have you tried different medicines? Opiods?
Lidocaine? (just a little note about opiods: they help my TN2 pain but not really the shocks, which the throbbing for me is constant so narcotics have been a blessing!)
I have had occipital nerve blocks done and it helped my eye pain. I also had trigger point injections in my face and head. Sometimes these injections work for me, sometimes they don't. I would try to find another pain doc who knows what they are doing. The clinic I go to here in VA has been great. I know it is frustrating to try new meds, new docs over and over again. Unfortunately, this seems to go hand in hand with this monster.
I really hope you find some good help and your pain starts to ease up some.
I’m sorry things are so difficult for you. It must have been so frustrating to have travelled all that way for a medical appointment to have the doctor googling for ideas.
Medically, I don’t have any useful advice but wanted to send you a healing hug.
Nikki, I feel so upset reading your words. Don't apologize for reaching out, we want to offer our support. No one here is "rated" as needy etc. We all NEED support. I suggest you write Red about cutting the nerve, it is a major step and you need good advice before proceeding with any procedure.I hope someone can offer some good medical help for you soon.Jx
I also don't think after having TN for 13 yrs. there is a normal. I know how you feel. I've been the full gammet. Heavy doses of drug for years, always going to a different combination. Dental, emergency room, new Drs., you name it. Finally in 2010 I chose the Dr. that created this MVD surgery in Pittsburg. I had MVD. Took care of the TN pain, off all meds, but I have what I think if nerve damage. Although no one seems to be able to help me. Swollen just enough to have lost my lips. Gums feel swollen, pain in eye, numbness but still tingling feeling, I could go on and on but whats the point. No one understands this. My family doesn't understand how I still suffer. I'm not so sure I would recommend the MVD. Some say it's because I had had Gamma Knife. But everyone is quick to blame others. Pain management Dr. want to put me on Lidocaine but insists I see a heart specialist first. If its that bad on your heart, do I really want to try it? At my age, are there to many risks, I'm hopeless and very miserable. Has anyone else experienced this? So I know where you are coming from. Do your friends think you are crazy. Has any of them bothered to look up just what you have, probably not. I feel for ya!
So sorry you are in such pain right now. What meds are you taking right now? I take carbenzabine and neurotin. I had MVD done 6 months ago and am still on my same dose of meds. They told me it could take up to a year for me to get off of them. They told me that I went back to work to soon and to take it easy. Stress brings on pain for me.
I hope that all of the discussions will help find you some comfort. I am so glad for this site. God bless.
It's not the same pain. It is more of an annoyance/its hard to explain. It bothers me badly. When I had the MVD, I was cold turkey on the meds. Absolutely nothing from the time after the MVD. Since we have tried all the same meds I was on over the years. Including what you are taking. We even had a topical cream mixed up for me by a druggist. It did nothing but dry my skin out and make my mouth extremely dry. Dr. tried a Lidicaine infusion in his office and it seemed to help. But in order to put me on it directly or stronger, I must first see a cardiologist. I think it can effect the heart. Well at 65, do I really want to take that chance? I'm not sure, if it effects the heart, maybe I should just suffer. So haven't persued it any farther.
Sorry to hear you are so low. I have nothing to offer medically but just wanted you to know there is support for you. It is very hard to handle TN especially when so few people can understand what we go through. I really hope that you can get through this rough patch.
at times i wanted them to open HALF my face and cut it and see what's inside.
50% reduction IS something... can the procedure be done in other areas ?
the pain doctor - i would go with her of course - BUT -i'm praying to find here in Israel a doctor that would "go with me all the way" and do several injections - in several places of the face and not give up so soon.. so in that sense - i think the doctor you saw WAS motivated to find the right area to inject.
by the way - when saying mandibular injection - you mean INSIDE or outside the mouth ?
maybe find another doctors that you trust - that is willing to do a series of injections - till, maybe , you'll find the right nerve spot that will stop (even for a while) the pain.
i also've heard of lidocaine infusion to ease the pain.. but it's not a "reapir' and you have to do this regulary... i don't know if that's such a good option , for me at least.
