Longtime sufferer with TN , really bad flare up, advice needed :(

Thankyou so much for your reply. I'm trying to get some sleep but my head won't let me! Literally! Xx

Thankyou for your advice, I was offered an Mvd years ago but because I don't have TN constantly, like some poor people do, it was a big operation to have and I decided against it . I also suffer badly from abdominal adhesions, and over the last two years I have had some surgery to try and correct it, I have also had an abdominal hysterectomy, and ovaries removed. I suffer daily with chronic pain from that, and now TN has decided to pay me a visit! I don't know how much my body can take! If it's still bad tomorrow I will go to my dr and see what she can suggest. I have all this and I'm 41. I'm also in a surgical menopause so have issues with that as well, sorry to complain a lot , I'm just feeling low because of it all. Thanks again for your reply xx

oh Tam41, 

I feel your frustration with what life has handed you as I have followed exactly the same path with adhesions, complete hysterectomy and now 7 years post menopausal at 43. however in some ways I am fortunate that my TN has arrived only within the last year. however it does feel like ' yeah go on kick me while I'm down'!

and please don't feel you are moaning. this is the place to let it out because as I have found with all my medical issues in my life that generally people around you do not understand. But here people do. 

I hope you have managed to get some rest. 

x

Thankyou, it's nice to know people understand. Adhesion pain is constant, and barely treatable, I had them operated on a few months ago and they are back worse than ever I have been to the drs with my TN and he's put me on carbamazepine, if it doesn't work or comes back worse, I will be referred to a specialist, but I'm really not keen on another operation! 

Hi Charlotte I noticed you had mad surgery when I had an mri they didn't find anything pathological on my TN nerve can you still have the mvd op if the don't find anything on the nerve

Yes please do, I have been like you, backwards and forwards to the dentist and doctors. In the end I just gave up and accepted that I have this, and always will do. 25 years later and I still have it, it's not going to go away permenantly, but the flare ups are definitely getting worse. I had about two hours sleep last night, so today is just a right off, I will prob be in bed most of the day. One side of my head just feels like it's on fire this morning. 

I hope you get the answers that you need, and are treated for this horrible, horrible condition xx 

Hi Tam41 and to All,

This is an update to my previous reply to Tam41. Please read above reply as this is a continuation. I went to my neurologist crying because I was in so much pain. She referred me to a neuro surgeon that I will see next Tuesday.  I am ready for any surgery. At this point I do not care, just take this pain away.

Anyway, here's the good news I want to share with everyone. Yesterday the neurologist prescribe a steroid pack called "MethyIPREDNISolone" that I have to take for 6 days. Also, prescribed a pain med called "Tramadol-HCL 50mg". She also switch my med from Trileptal to Lyrica. I took all these medications as prescribed starting at 4pm and went to bed. Woke up at 5:30pm and felt the pain subsided about 30%. By 10% the pain subsided about 50%. I don't have that stabbing/electrical shock, but more like a major aching in my gum, which feels like a thousand ants are chewing on my gum. Anyway, I went to bed and this morning my pain subsided about 80%. The achingness to the gum now is managable. I am able to talk, smile, eat, walk normally instead of super slow because it hurts just to walk. Well, it in now 12:20pm central time (I'm in Houston, Tx) and I haver zero pain at all.

For a temporary fix maybe you all can ask your doctor to prescribe the steroid pack. I think that is what helping me the most.

I'll update you all about progress, especially after surgery.  In the meantime good luck to everyone. This is a horrible disease. I pray to God that there will be a cure for this.

Hi Tam41,

I had MVD surgery on June 19, 2014. Today is exactly one week post surgery. Surgery wasn't as bad as I thought. The first 2 days in ICU was horrible. Headaches and neck pain from incision felt like I just got ran over by a bus. I thought someone stuck a stick inside my neck because that's how it felt. They gave me Dilaudid thru my IV and that erased all the pain and put me to sleep instantly. I was also on Narco every 4 hours to control the pain. Dilaudid was on an as needed basis and I needed that quite frequently. I did nothing but sleep the first 48 hours. Day 3 was a whole lot better. I decided not to use Dilaudid and that kept me from sleeping all the time. I was able to walk very slow to the bathroom on my own. I also had to walk with a physical therapist back and forth in the hospital hallway. Once they see that I'm able to do these things on my own, I was released from the hospital by the 3rd day. The one BIG problem I have with this operation that no one told me could happen was the entire right side of my face is NUMB. This include forehead, temple, cheek, inside of my cheek, chin, tongue, teeth, lips. It's like you can get a knife and slide right in the middle of my face and the left side is perfectly fine (untouched) and the right side is totally dead. My surgeon finally came to see me and he said this can happen. He was surprised it happened, but it can happen and it will take 3 months to get the feelings back. That kind of worries me when he said he was surprised I was numb. Does this mean something went wrong? He said I had two blood vessels rubbing onto my trigeminal neuralgia nerve. One of the blood vessels was big and the other was small.  I am to go see him next tuesday (day 11 post op) to remove stitches.  So far, the pain from the surgery doesn't bother me. The headache is at minimum. I would give these two pain a 3 out of 10. The numbness is still there. However, my forehead, tongue and lips are only about 15% numb, which is a very good sign. My cheek, inside of my cheeck, chin and teeth are still 100% numb. I accidentall bite the inside of my cheek a lot since I don't have feeling, which caused me to have a few cancer sores. I have not had TN pain since the surgery, but I'm not sure if it's because my cheek is numb and I don't have feeling even if the pain is there? I hope this is not the case. Overall, do I regret having the MVD surgery? Not one bit. The numbness is uncomfortable, it it is nothing near the TN pain of being electrocuted or stabbed on a constant level. Where should a person decide on surgery? I think the answer lays without yourself. I never wanted to do surgery, but once the pain in constant and unbearable you are willing to do whatever it takes. MVD surgery is not as bad as one may think. I think the side effects is where the fear should be in, not the surgery it self. Find a good, reliable surgeon. That is the #1 key. My surgeon is Dr. Dong Kim in Houston, Tx. He is supposedly one of the best in Houston. He saved Gabriel Gifford's life, former US Representative, when she was shot. They flew her to Houston for Dr. Kim to operate on. I will keep you posted on the progress of my numbness. Good luck to all of you on finding relief and get rid of this TN pain for good.

Hi Laurel3865,

Glad to hear that you had a successful operation. As regards your concerns about the numbness I can just tell you about my experience 20 years ago. The key thing here is that your surgeon did identify the problem, i.e. that the blood vessels were rubbing against the nerve. It was the same with me and the operation which involved separating the nerve from the blood vessel was totally successful and the pain disappeared completely and no numbness for over 20 years! It did eventually return but hopefully in your case it will not. Best wishes

Hi TK1946,

I've done a lot reading and researching on MVD and stories about TN pain comes back after few years of successful MVD surgery. One of the stories I read was yours. The pain went away for 20 years and came back. What happened or why? I also read that if TN pain hasn't come back after 10 years post MVD then most likely a person will be pain free for life, but this wasn't the case with you. Did another blood vessel got in the way of the trigeminal nerve or what happened? If I remember correctly, you did another MVD and surgeon couldn't find the blood vessel rubbing the nerve so he did a rhizotomy (cutting the nerve)...was that correct? I've read so many stories maybe I got it mixed up with yours.

Every day i notice of getting flutters in my face where the numb areas are. I can't figure out if that's nerves regenerating back to life or is that my TN shocks? Even though the flutters don't hurt, but the back of my mind can't help but think it doesn't hurt because my face is numb. I sure hope those flutters are not TN pain. I will probably cry and get all stressed out again if they are.

Hi Laurel3865,

Glad to read you had a successful op. I hope the numbness starts to wear off a little more each day. I had something similar a lot of years ago and it did take a while for the feeling to come back in some places ( and yes there are very tiny places where it is still a little numb), but please give it time to heal, rest and take care of yourself .

Hi Laurel 3865,

Yes that was my story,the TN returned after 20 years. I don't know why as there was no obvious reason except as you say yourself it can happen years after the surgery. I am thankful that I had that number of years painfree. However, as you also remembered the second operation was not as successful. The nerve was cut (only way to be certain of pain relief) but the side effects are quite unpleasant and especially as I was not prepared for them. Its now over 4 months since my surgery and I still have the after effects. Worst is the "dry" eye which constantly feels like there is grit in it and feels tight and throbs especially when I close it. In addition to the numbness down the left side of my head and face I also have a very sore mouth (left side) including teeth and tongue and lips. This affects my taste and also my speech a little.While it's still better that the excruciating pain of the TN, I would recommend to any sufferer to try out every possible other remedy including prayer before considering surgery. I hope that those flutters that you are feeling are indeed the nerve ends repairing but I really don't know. I have been told that it can take up to 18 months to get some feeling back. I wish you well and that the dreadful pain stays away!