Hi all,I have lurked here for years and read many of your stories.Compared to many,perhaps all or most of you i know i am quite lucky.My AVM never presented itself until i was ready to have a AVD surgery for my T.N. condition.A terribly horrid face pain condition caused by the trigeminol nerve being disturbed.My surgeon suggested i treat the AVM with radiosurgery and hope that it released pressure on the nerve.Well,for 10 months or so i thought it worked,but the pain came rushing back more severe than ever!MRI showed no change in the AVM,the doc saying that it could take 3 years to work.He suggested more Radiosurgery to treat the nerve and i saw Dr. Desoloms ,a neuro in Dallas that did the procedure at Presbytarian hospital.It took 9 weeks for the pain to totally retreat,but now i am pain and med free and feel great!I suppose to AVM is still there ,but i'm hoping the Gamma Knife bought me enough time for it to recede,heal,or whatever it should do.Sorry for long post.I know my situation is nothing compared to those that are young with small children.I'm 60 this year with grown and successful kids.The stories here just break my heart and i wish you all the best.I was just wondering how many had a situation like mine ,AVM causing trigeminol Neuralgia.Peace to all.Don
Thank you Ninibeth,Yes,TN is crippling unimaginable pain.Between episodes i even forgot just how bad it is.The Bens Friends forum was a tremendous help for me and so many others as this one is for AVM sufferers.
I also have a AVM which causes Trigeminal Neuralgia.
My TN started in 2008 and it was after many tests that I found out I had an AVM which was compressing the TN nerve, and causing the pain. Due to its location surgery was not an option but I could have Gamma Knife surgery which took place in March 2011. I was told that it should start reducing the pain three months post GK but it didn't make any difference.
I have my second MRI next week to see if the GK has started to have any effect on the AVM. The first MRI showed it hadn't had any effect but like you I was told it could take 3 years.
I still have 30-40 zaps a day despite taking medication. I saw a headache specialist in October who mentioned having more GK to just treat the TN nerve. I see my Neurosurgeon in January to discuss this.
Your story gives me real hope for the future. To get rid of the TN pain would be very welcome.
Jo,It sounds like you are where i was a few months ago.My AMV was in a spot they really didn't want to deal with also.I had the Cyber knife on the AVM and thought that did the trick,but i soon got slammed with a terrible onset of TN.I was all set to have another cyber knife from the same doc,a cancer specialist actually in Ft.Worth,Dr.Park.He recommended treating the nerve itself,the main branch,for the pain.Meds weren't working any longer!Suddenly i get a call from Dr.Park himself telling me that his cyber knife procedure had been shut down!Something about a mistake someone made(not his office he made clear) and investigations were going on ect...I went to another Neuro in Ft.Worth that clearly and bluntly didn't want to get near me and my situation.I was totally frustrated,angry and having extreme pain.His other recommendation was in Dallas which i wanted to avoid,but i'm so happy i went to Dr.Desoloms.He looked at all my past tests, MRI's, Angiograms, and other information.I went through Presbyterian hospital as a out patient.I was able to rent a room there the night before so it made it quite easy.I could immediately tell the difference,but whenever i would try to cut my med,the pain rushed back.Finally after 9 weeks i was pain free and no med.Even though Cyber knife has a spotty track record for the pain returning.Im so glad i did it and try to enjoy each pain free day.One other option you might look at is the PS.Perifial (sp?) Stimulator.Check out the T.N. site here for some more info on it.That will be my next arrow should i need it.Thanks for sharing and good luck!
Thank you for suggesting the other treatment. I want to be fully prepared for my appointment in January and be able to discuss all the options available to me.
I know that I need more help in managing the TN. It has been five years of agonising pain and now I feel like I'm getting to the end of my tether with it. Last week I had to go to A and E for pain relief.
I'm so glad that you are pain free at the moment. That must be a fantastic feeling that only someone who has suffered with this would understand. It is the unpredictability of the attacks that I find hardest dealing with.
Thanks again, and kind regards,
Jo,Yes,i do feel blessed to be free of the TN pain and the meds.But mine has always retreated completely and then come back stronger than ever.So,im still walking on eggshells and kind of flinching with a gust of wind or when the shower hits my face.Triggers like that that im sure you can relate to.I don't know if the PS is offered in the UK,it's quite new here and mainly used for back pain.But the pain specialist told my gp that his success rate was 100% with it.Good luck,i will say a prayer for you.Let me know your progress please.Don