Hi ... I have ATN and thinking about MVD. I am looking to chat with someone who has experienced other types of TN pain, like burning and aching and did the MVD surgery fix those pains, or just the electrical, zinging, shocking pain.
Thanks!
Jessica
Jessica before booking an operation I urge you to look this up on the Face Pain Info tab, there are some serious considerations you need to be aware of. Jackie
Hey Jackie — oh yes, absolutely. I am not booking anything at the moment. I was just looking to connect with anyone who may have had MVD and ATN. I appreciate you concern!! XO
Jackie said:
Jessica before booking an operation I urge you to look this up on the Face Pain Info tab, there are some serious considerations you need to be aware of. Jackie
Jessica...just wondering if you had looked into your options? I had MVD February 5th, 2010 and have yet to have a day without pain...in fact it has gotten much worse. Almost like having 2 or 3 pains and coming out with 7 or 8 and I am ready to just sit in a corner and not move anymore...heck of a way to live. I was just hoping to hear someone else's thoughts. I hope you are feeling better.
Kimkow, I’m sorry that you came out of the mvd w/ increased pain. My mvd was opposite and was a little different than other mvd’s. Dr Carson at Johns Hopkins in Maryland, takes muscle from the scalp and wraps it around the nerve. The operation took 4.5 hours and upon waking from it 6 years ago the harsh, ear stabbing pain was gone. The horrendous headache subsided after 12 hours. I had gamma knife twice prior to the mvd, so that pain, which is atn type pain and on and off again anethesia delorosa symptoms are still here. I sometimes have constant pain, sometimes it comes in waves oe episodes. Dr Carson said that if it pain relief lasts five years, it should last a lifetime. His PA, Carol James, will talk on the phone or over email with you in case you have questions. I know Dr Carson has fixed other failed mvds and if pain could not be eliminated, he could improve it(like w/me). Please msg me if you’d like to chat privately 
kimkow said:
Jessica…just wondering if you had looked into your options? I had MVD February 5th, 2010 and have yet to have a day without pain…in fact it has gotten much worse. Almost like having 2 or 3 pains and coming out with 7 or 8 and I am ready to just sit in a corner and not move anymore…heck of a way to live. I was just hoping to hear someone else’s thoughts. I hope you are feeling better.
Lydna,
Thank you so much for your reply. It is pretty scary how alone I feel with all of this...no one seems to "get" it at all. It almost makes a person feel like they are crazy because people don't really believe your symptoms. Life just feels like I have been beating my head against the wall. I just don't know if I can go through the surgery again...it was so painful and scary, I just don't know if I can do it again. I swear during recovery I heard the nurses talking about how my heart went into A-fib and they had to put in an a-line IV...we are going to ask the doc when we go in next week but it scares me. I have wondered about the gamma knife and permanent nerve block but I just don't know which way to go. I just can't live like this anymore...the pain over the last few days has gotten so bad and intense, I can't sleep, I have to put ice on my face every night when I try to sleep and I wake up when it melts.. Did you get swelling, redness and a hot feeling across your cheek? It almost looks brusied from time to time and a pain down into my neck too. It just feels like enough is enough...I am not even 40 yet but I feel so much older.
Sorry to babble on so much...I am just so worn out and I feel so hopeless at this point. Thank you again for your response and input, it means a lot.
Kimkow — We are here for each other to listen during times like this and to say, you are NOT crazy. Remember this is a rare disease. If you sent anyone online to look it up or to come to this site to read others' comments, they would take a step back from their reaction to your pain. And, remember they are reacting to your pain, NOT to you. Try to keep it separate, it's hard, but if I can keep it separate, then the emotions are left to help my body to cope with high pain.
You need to be seen, Kimkow. What you're describing is scary. Can you see your doc any earlier? Have you given the office a call to say what is happening? Our number one priority is pain control, so along with your normal TN meds, there should be something for breakthrough pain (something that agrees with your system). If you're having pain that the meds are NOT covering (which is really taking the edge off of the pain, and lowering it a few notches on the pain scale), then you need to call your provider asap. Our responses to them that go something like, "This pain is WORSE than before the MVD," have to be taken seriously. If they cannot help you right there and then, they will probably ask you to go to ER.
Always take your medical history with you. Under the FACE PAIN INFO tab at top right of this page, there is a form that you can download and fill out. Click here to get to the page quickly: http://www.livingwithtn.org/page/reserved-tab-b, I can't find it on the page, and I have to step away for one minute. I'll return with the info for you.
Take care, dear :-)
Sincerely,
LyndaS
kimkow said:
Lydna,
Thank you so much for your reply. It is pretty scary how alone I feel with all of this...no one seems to "get" it at all. It almost makes a person feel like they are crazy because people don't really believe your symptoms. Life just feels like I have been beating my head against the wall. I just don't know if I can go through the surgery again...it was so painful and scary, I just don't know if I can do it again. I swear during recovery I heard the nurses talking about how my heart went into A-fib and they had to put in an a-line IV...we are going to ask the doc when we go in next week but it scares me. I have wondered about the gamma knife and permanent nerve block but I just don't know which way to go. I just can't live like this anymore...the pain over the last few days has gotten so bad and intense, I can't sleep, I have to put ice on my face every night when I try to sleep and I wake up when it melts.. Did you get swelling, redness and a hot feeling across your cheek? It almost looks brusied from time to time and a pain down into my neck too. It just feels like enough is enough...I am not even 40 yet but I feel so much older.
Sorry to babble on so much...I am just so worn out and I feel so hopeless at this point. Thank you again for your response and input, it means a lot.
Okay, Kim, I'm back from picking my boy up from school.
I hope that your pain subsides soon. I was not sure when you had your MVD done, was it recently? I only suggest talking to specialists just for information on your particular case. I know when researching our options for surgical intervention, we interview (my hubby and I) many docs and called many PAs to pick their brain on the subject. This was where I was coming from when suggesting to call or eMail the PA. When you are in the height of pain you are describing, pain is first priority. Don't worry about anything else but taking care of YOU! When this pain gets under control and you feel like chatting, please let me know. Meanwhile I will be praying for you daily until I hear from you again.
I am so sorry that you're in a painful place right now. Pain does make you feel older. I was 37 when TN came to visit ten years ago and feel much older that I am due to the tredges that I've had to go through to get to a place where pain IS controlled and I have a semblance of a life. It can and will get better, Kim, it just takes time sometimes. I wish you were near, I'd come and give you a hug!
Take it easy, Kimkow :-)
Sincerely,
LyndaS
Here is the medical form that is found on this site:
http://www.lawhern.org/AttendingPhysicianAdvisory.doc
You can find this and much more info here at this link: http://www.livingwithtn.org/page/reserved-tab-a
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LyndaS said:
Kimkow — We are here for each other to listen during times like this and to say, you are NOT crazy. Remember this is a rare disease. If you sent anyone online to look it up or to come to this site to read others' comments, they would take a step back from their reaction to your pain. And, remember they are reacting to your pain, NOT to you. Try to keep it separate, it's hard, but if I can keep it separate, then the emotions are left to help my body to cope with high pain.
You need to be seen, Kimkow. What you're describing is scary. Can you see your doc any earlier? Have you given the office a call to say what is happening? Our number one priority is pain control, so along with your normal TN meds, there should be something for breakthrough pain (something that agrees with your system). If you're having pain that the meds are NOT covering (which is really taking the edge off of the pain, and lowering it a few notches on the pain scale), then you need to call your provider asap. Our responses to them that go something like, "This pain is WORSE than before the MVD," have to be taken seriously. If they cannot help you right there and then, they will probably ask you to go to ER.
Always take your medical history with you. Under the FACE PAIN INFO tab at top right of this page, there is a form that you can download and fill out. Click here to get to the page quickly: http://www.livingwithtn.org/page/reserved-tab-b, I can't find it on the page, and I have to step away for one minute. I'll return with the info for you.
Take care, dear :-)
Sincerely,
LyndaS
kimkow said:Lydna,
Thank you so much for your reply. It is pretty scary how alone I feel with all of this...no one seems to "get" it at all. It almost makes a person feel like they are crazy because people don't really believe your symptoms. Life just feels like I have been beating my head against the wall. I just don't know if I can go through the surgery again...it was so painful and scary, I just don't know if I can do it again. I swear during recovery I heard the nurses talking about how my heart went into A-fib and they had to put in an a-line IV...we are going to ask the doc when we go in next week but it scares me. I have wondered about the gamma knife and permanent nerve block but I just don't know which way to go. I just can't live like this anymore...the pain over the last few days has gotten so bad and intense, I can't sleep, I have to put ice on my face every night when I try to sleep and I wake up when it melts.. Did you get swelling, redness and a hot feeling across your cheek? It almost looks brusied from time to time and a pain down into my neck too. It just feels like enough is enough...I am not even 40 yet but I feel so much older.
Sorry to babble on so much...I am just so worn out and I feel so hopeless at this point. Thank you again for your response and input, it means a lot.
Lynda,
Thank you so much for the link...I am honestly thinking of going in to the ER this afternoon. I am in so much pain across my forehead, my cheek, down the bridge of my nose...basically my head is just killing me. My surgery was Feb 2010 and the pain has just gotten so much worse lately. I am not on any TN medication, I can't take it, I tend to get all the crazy side effects. They made me very loopy and out of it...I wasn't able to form the words that I wanted to say. My husband was overseas in Afghanistan and it was just me and our 3 kids. He just got back a week ago so at least I have emotional support here. I can't get anyone to give me anything for the pain and I have been on 20 antibiotics over the last 24 months. I have had ice on my cheek pretty much all day but it is not helping at all. I don't know what to do.
Thank you again for your advice, input and kind support...I will keep you posted.
Kimkow,
I'm sorry you are having such a bad time. I can empathize as I am coming out of a really painful flare of my TN pain. I have finally gotten relief with Trileptal. Have you ever tried that? I could not tolerate Tegretol and Neurontin seemed to make me really sleepy. I too have children to take care of and cannot be a drugged up zombie during the day. I have had very minimal side effects on the Trileptal and about 85% pain relief after being on it for 3 weeks now. It could be worth a try. I did not want to go on an anti-convulsant mediation. But my pain has been so bad over the past 2 months thatI was willing to try about anything. I sincerely hope you get some relief soon.
Hi Jessica,
I have ATN & am having MVD surgery next week. I will let you know how it goes. My surgeon said the MRI shows a vessel above & below the nerve. I know the chances of a successful MVD lowers when it is ATN but I am willing to take that chance. I can't handle staying on these medications.
Good luck to you!
Gena
I had MVD just a few weeks ago and am still recovering. But ALL pain of the TN was gone immediately upon waking up. The teflon inserts insulate the electric pulses between the nerve and blood vessels immediately. I was told however that it Is possible that over time, a teflon piece may shift and the pain would return. They said it would be replaced if that happens but that it is rare.
Giki...I hope and pray that your surgery is a success. Don't be afraid to ask questions and let them know what your fears are..that is what they are there for. Keep us all posted.