I thought since we had a dialogue on here; I would share: I just had cervical injections yesterday. My doctors “thought” I had right arm bursitis for 6 months. Injections, physical therapy…physical therapy…physical therapy…co-pays; you know how it goes. An EMG said more. So, something is going on. Back to PT for cervical issues tomorrow. I still wish my facial pain would stop. Waiting on the neck / arm. Does it ever end or am I just getting to the beginning? The epic saga continues…
Liz6,You’re reply resonated to me on many levels. I got TN in 2011 after brain surgery to remove a tumor. Tried all meds (was deemed refractory), had 2 unsuccessful gamma knife surgeries and tried all else (acupuncture, chroprapactory, medical majuana) Finally agreed with surgeon who said "Ellen, you can’t live like this) and went for the MVD on Nov. 4, 2016. It turned into a full craniomtomy (forgive my spelling), 6 weeks in a coma, with all the compications (pneumonia, CDif, tracheostomy, feeding tube). There were many times when family, friends and a few doctors thought I wouln’t make it, or worse, come out as a vegetable. As I started to come out of the coma I was shipped to a Rehab Center and came out fighting mad. I remember little of this but finally realized I could put all the anger into energy to get well. I just got home (Feb 14) with VNA (RN. PT, OT, CNA) support. I am improving by leaps and bounds. Although the TN pain is still there, the major attacks are less frequent (although 100 times worse), I am very positive about my future.
So, I agree with you about MVDs. I admire your tenacity and courage. God bles you and thank you for your post.
Oh my gosh, Ellen, you’ve really been through the wringer! So glad you are still here and doing so much better! My feeling about MVDs is that the whole concept just doesn’t make much sense. There has to be some underlying weakness in the nerve tissue, such that it just can’t take a blood vessel resting against it. It seems to me that there needs to be more focus on what is wrong with the myelin sheathing to allow this situation to cause so much pain. Obviously, our bodies were not designed to need brain surgery in order to function properly.
But of course it does work for many, so until we have better options, it may be the best solution for some. For me, it would have to be an absolute last resort, and your story just confirms that.
Dear Ellen , you poor girl !! I am so sorry for all you have been through , you are truly a warrior in this battle . I hope you continue to feel better each day , you have gone through so much turmoil and pain you and all of us deserve a break!! I also agree with Ziggy on that there must be some underlying issue with the Mylen sheath that that can’t handle contact with blood vessels or veins. Never really thought of that angle. More reason for B-12 ? I’m gonna go have some haha😉 bless you all!
I had stuff going on with my arms and hands with amitryptiline,nortryptiline and clonazepam.As soon as I stopped,within 4 days the symptoms disappeared.My doctor said it was impossible.Good luck.No physio would have helped me.
Being on the computer causes pain. I was going to write a short email to a “new” doctor re: trigger point injections and provide him with the documents and “private notes” from some of the doctors I have seen along the way. (Plus the newest grenade from our insurance company telling me they’re denying my request for a medication and citing “google scholar” and newspaper articles. To make things worse, the insurance company filled the prescription and provided partial instructions about how to “taper” from that medication. I believe that’s called practicing medicine without a license. I promised my pain doctor I will not let this go!)
Pain - started within a few months after I had initial dental procedure - the bilateral jaw surgery - broke my jaw in four places and put back together with titanium screws. “Set” the break using braces I had been wearing for about a year and continued to wear for another year. My new dental specialist explained that although this surgery is still used with children who were born with the same birth “defect” - micro somo hemifacial. Big difference - From birth, I’m missing a bone that keeps your ear canal separate from your jaw. In my case, once the jaw surgery moved everything, every time I open and close my mouth, my jaw joint went into my ear canal. I figured out this “might” be a problem years later after reading a report of surgery I had done years after the initial surgery. NO other medical provider thought it was a significant fact and it took years for me to convince anyone else that it might be an issue. It’s still a problem now.
I’ve had injections for my neck - ablations, etc. No luck. The MVD identified a major problem with the nerve(s) involved in geniculate neuralgia. MVD did nothing to help “the pain.” The peripheral nerve stimulator seemed like a good idea because the temporary was so successful. The permanent one cause terrible vertigo. In hindsight, the Stimulator seemed to provide some pain relief (hard to tell if it goes from a 12 to an 8). After five months the pain got much much worse. Eventually, the neurosurgeon who put the stimulator in did a simple x-ray and could see that the wires had moved. The doctor wanted to re-do the surgery. I wanted it out. Hard to imagine how the wires could be set on the thin muscle above my ear. After I got the whole thing removed, including the enormous battery on my chest, the vertigo disappeared. I’m dealing with the fall out of the scar tissue from the device. Plus the usual not helpful chorus of medical people and my friends and family wondering WHY I made such a terrible decision to have it put in… Let’s leave that alone for the moment.
I agree with Ziggy re: the analysis of MVD surgery. For “typical” cases, I think it can work. Particularly people who were diagnosed relatively quickly - less than a year - and when it was not caused by a physical trauma, like a dental procedure. For that group of people this surgery is life-saving, as long as it is done safely… When my pain continued after my MVD, my doctor said that his initial reaction was to go back in because he must have missed something. After reviewing a new FMIR, he concluded he had not missed anything. Sadly, the biggest part of my problem could not be fixed by the surgery. (More on that discussion later!)
Finally, how do you go on? That’s something I struggle with all the time. As the years go on, the pain increases, my body struggles to deal with the fall-out from the pain and the slew of medications. I continue to look for something to provide meaning to my life other than going to appointments. Now, I’m going to get off and spend time with my husband before we go to a matinee play. I just went through a major crisis / flare and spent months grappling with this central question. More later, I promise!!
I see it’s been a year since your post. Hope the pain has gone into remission for you. I feel the same way – I just wish I could smile, laugh, sing again. The pain for me goes in and out of electric shocks phases to long oppressive burning phases and sometimes both. Botox helps, but it’s not cheap and normally isn’t covered. Medicines either work but have too many unpleasant and nasty side effects, or they poop out, or don’t work at all. I miss being able to laugh and plan. And garden. And fish. It’s exhausting. I have had pain before, but this is so oppressive – I suppose any chronic pain is. I have had it for over 7 years now. It’s impacting my work, my social life, my children … I keep trying to push through, but today is one of those days when I feel like I can’t anymore. I would cry, but it hurts. And when I think of the irony of that, it makes me laugh. I may have to change careers again – one where I don’t have to speak. A Writer? Someone at the DMV? Taking suggestions …
Hi there. It has been a while since that post. Funny you mention Botox, I started Botox injections in February and have had some relief. First time so, the stabbing and crushing pain was more manageable. I don’t like looking like I had a stroke, but I’ll take the crooked smile over the pain. I have to get round 2 in May. I guess I’m lucky my insurance pays 100%. Neurontin is like candy now that I’ve been on it so long that I agree, it’s lost any benefit that it may have once provided. Even though my face feeling tolerable, I can hardly attempt to enjoy things due to some shoulder issue, I can’t do much of anything. Of course, I’m right handed and it’s my right arm. I’ve been in physical therapy for about a year. Damn chronic pain. Just typing this is killing my shoulder. Yet, I persist to torture myself. I’m a junior to you, 10/11/2013 was my day. I feel constantly on a learning curve on how I’m going to continue to deal with this. I have no idea if I’ll ever work again. I can’t tell anyone I’m going to arrive and leave at this time on whatever day. I’m 100% unreliable for any event.
I was told by my insurance Humana Medicare that I could get Botox and the treatment left me with a great speech impediment and made it harder to open my mouth. It still has not worn off but I am happy it worked for you. Nothing but sleep works for me either. Blessings, barbiedollstars.
Have you ever tried lidocaine cream? I always have it with me. It is a numbing cream and you can buy it from amazon. Takes about 1 minute for it to work. But it’s only short temporary relief. I use this cream while waiting for the medicine to work if I forgot the medicin. For medicine, I take tegretol but brand name drug and that seems to work much better than generic kind but it is 20x more expensive.
I apply the cream to the gum around the area the pain started. YOu are not supposed to swallow it but my dentist said a little bit in your body is safe. The creamctaste is nasty but it helps stop the pain.
Tanya, have you tried the patches? These are slow-release lidocaine and so they are effective for a much longer period of time. I have dental pain and I located an area on my face (next to my nose) where the nerve runs, and the patch is quite effective, though subtle. You might try moving a small patch around until you find a place that works (dentist said not to use in mouth). This is probably not something that you would want to wear in public but it is nice to have some relief in the evening.