Hi all my name is avril I'm 32 and i'm living in ireland. I am suffering with TN for 6 years now. I had MVD in feb of this year which was a sucess except for the fact that i have nerve damage all across the left hand side of my head due to surgery which they still don't know how to treat. My head constantly aches and shocks through my head, my scalp feels like it's been burnt and very sore to touch especially when trying to wash and brush my hair. Since surgery I now have TN on the other side of my face and in agony daily and house bound once again. Couldn't belive my luck when i started getting shocks across the right hand side of my face.
I have told my story to the sunday independent about living with TN and it was published in june. I have received hundreds of messages from people suffering like ourselves around ireland and parts of the world, it has really opened my eyes as i thought i was alone suffering until my article was published and the emails started rolling it. I just wanted to raise awareness on this horrid illness and it certaily did that.
Hope everyone is having a pain free day x
Thank you for your response, I have been looking at your forum and have found it so interesting and full of information, I will certainly help people in any way I can. I just wish I had found this site a long time ago, I thought MVD was the answer to all my prayers I wish I had done some research before hand but then again I had no choice I was in agony 24/7 and it has helped the left hand side of my face. Can I ask have you ever heard of anyone getting head and scalp pain with electric shocks if I move my head or walk after having MVD surgery, I head was fine going in but once I woke up from surgery my head was pure agony and 9 months later and still very painfull. My neurosurgeon said he has no idea why this happened and doesn't know how to treat it...I just want to get to the bottom of it incase I have to have surgery on the right hand side in the future. I have looked through the forum but can't find anyone with the same complaint.
Thanks again for all your help.
Concerning MVD, for people with Typical (Burcheil Classification Type I), TN it very often is head-and-shoulders the best solution when medication doesn't work or creates unacceptable side effects. That said, not all surgeons are created equal. This is one reason why I encourage people considering the surgery to ask their doctors about outcome statistics and follow-up survey practice.
You asked : "have you ever heard of anyone getting head and scalp pain with electric shocks if I move my head or walk after having MVD surgery". The answer is at least in general terms "yes". The electric-shock pain can be a manifestation of typical trigeminal neuralgia that wasn't cured by the procedure. Moving your head or jostling your head by walking is a bit unusual as a trigger process, but not unheard of.Likewise, pain on both sides (generally having a different character on the two sides, or occurring at different times on each), was once thought to be quite rare, but is increasingly beginning to look more common than once thought. There must be 20 or more people among the 1600 of us who have pain of that distribution.
These things being said, where exactly on your scalp do these effects occur? If pain is in front of the midline of the skull running just behind the ear, then the nerve involved is the trigeminal nerve. If pain is behind this line, then generally the greater occipital nerve would be impacted. If you've got it in both regions, then I'd be suspicious of a possible third factor and that is post herpetic neuralgia -- a reaction to reemergence of Herpes Zoster, the agent that causes Shingles.
Try a search in our search box at top right for "scalp". I think you'll see a number of hits that may be germane to your concerns.
Go in Peace and Power
the occipital nerve can be damaged during an MVD. the incision may have lacerated the nerve, the retractor used to hold your scalp skin apart during surgery could also have distorted it. it's an unfortunate complication, but it does happen. lastly, serious muscle spasm in the jaw, neck and shoulder muscles can also squeeze this nerve. your neurosugeon should know and be aware of this. present this possibility to him at your next visit or phone call.
I had the MVD done in Feb 2010 and only got one year of relief. When you speak of your head feeling sunburnt, I had that after my radiation procedure. And it is pure hell washing and brushing your hair. I can not believe that there is someone else out there that describes it like that. I had that procedure done in May of this year and still have excruciating pain. Very frustrating. My thoughts are with you and I wish you many pain free days!!!! Take care!
Avril, I am so sorry to hear about your failed MVD surgery. I was considering getting this surgery and I had just finished meeting with the neurosurgeon. But, I wanted to take the conservative approach first by using meds for awhile alonger. I will keep you in prayer hoping you find a quick solution to your pain. Hang in there knowing we are all here supporting you at Living with TN.
I’m glad to hear that the accupuncture is given you some form of relief. I very sorry that the MVD causes you to have more problems, hopefully there is a miracle around the corner for you. You have come to the right place for wrap around support.
I was impressed with your newspaper interview.
Your personal story of victory over obtaining a answer on what the hell was going on with you is an illustrating of what happens to alot of us and public awareness is a must.
Have you thought about laser treatement and B-12 injections! Have you gotten a full mouth dental exam?
Unfortunately, many of of these types of TN 1 and 2 can seem to be stagnate and we are left at a standstill. The goal is to help people live stronger with hope and healing. And your testimonie is very valuable to us all.
God bless you.
Thank you so much for all your advice and support it really means so much to me, I have contacted so many people and doctors and no-one can give me an answer. I just wish that I can to this site sooner because in the space of a few days I have found alot of answers to my questions which gives me some hope. I had got to the point of not wanting to carry on but having a fantastic partner and daughter has made me carry on for there sakes.
I can't belive Billie that I have finally found someone with the same complaint as me since surgery, can I ask you has your doctor recommed anything to help with the scalp and head pain?? I am taking a high dose of tregetol which doesn't do anything for it but it helps with the TN pain, and my memory and dizzyness are shocking I even have to hold on the the furnature when walking around. I have tried everything for the head pain but the only thing that seems to help is alot of heat. I would love to hear more about your complaint Billie and maybe we can get to the bottom of this some day as its not very pleasent to live with.
I have went to several dentists over the years but they say my teeth are fine. I got a spint yesterday for my TMJ problem and this morning was the first morning I woke up without a stiff sore jaw so it seems to be working. The dentist said it will take several months to get better as my jaw is in a right state and I can barly open my month.
One thing I can say James is that MDV isn't all bad, I've heard from lots of people with so many sucess stories, I just think that I was one of the unlucky ones. However it did fix the TN on the left side of my face and jaw so I am still pleased about that because I was on morphine injections daily for months before the surgery and it only took the edge off the pain.
Kim I have never looked into B-12 injections or lazer but it might be worth asking my neurologist when I see him in a few weeks time.
I want to thank you all for your kinds words in contacting me and if I can help anyone though my experiences I will be more than happy to help out.
Hope you are all having a pain free day xxx
I realize that a lot of people are desperate for solutions, but I would caution against laser therapy. I've been digging into one of the centers that widely advertises its services in this area, and I find nothing in medical literature which supports their claims. They're also not covered by medical insurance because Medicare has assigned no procedure code to what they do and FDA hasn't certified them effective. They're also expensive -- thousands of dollars.
I wonder if you could have a form of "Anesthesia Dolorosa", that is one question I would ask your MD about.....
Hi Kim I was just googling it earlier sounds very like my complaint, espceially when parts of my head is numb or other parts are pure agnoy to touch. I have to lie and sleep in a special position to make sure that my left hand side of head head doesn't touch the chair or my pillow if sleeping. Cold and wind makes it worse too. I'm suprised that my neurologist or neurosurgeon couldn't detect this, all they could say is that they have never come across a case like mine before and basicially I need to learn to live with it, " easy for them to say".. I just feel so restricted to what I can do because holding anything heavy makes my head hurt so bad. All I want to do is get my life back and return to work. Do know if there is any treatment for "Anesthesia Dolorosa"??
Thank you for your advice apprecite it xx
As you have already figured out that Anesthesia Dolorosa(AD), an extremely rare condition similar to phantom limb pain, except that it is in the face and that the face obviously is still there, but numb.
I would scan the AD blogs in other location online and see what other folks have done to help themselves and report back to us and let us know.
There is one that stands out to me, which is mirror therapy, it seems logical in a sense but the respond is probably a personal one. Get a portable mirror and practice it several times a day. (It won’t hurt you)
There is a handful of different suggestions online at different blog sites about AD. I would look at the pros and cons and figure out if you have already done that or not.
Choose the ones that seem logical for you, and go from there.
I hear you about ending it all, I have been in that spot plenty of times. When you ever feel down remember to call upon any of here at “Living with TN” and we will help get you throught it, even if it is minute by minute help until you feel like you can stand on your own again.
For whatever this is worth, Avril, I'm also working on an article concerning "Coping With Crisis' particularly for people who feel themselves at wits' end. Once I get it done and into peer review by moderators here, I'll post it to one of the sub-tabs under "Face Pain Info", and encourage a wider participation by other members.
Go in Peace and Power
Great guys tanx i’ll check.it out x
Did you have any luck with Mirror therapy?