I knew back in 1999 that I have a meningioma (benign brain tumor base of brain in the pons area). In 2005 I had Gamma Knife to stop the tumor growth or shrink it...the Gamma knife was successful. In 2008 I started with TN. Since December 2013 I am in constant pain, as for today...worse pain 10+ all of the time, unable to eat or talk. I spoke with the neurosurgeon last year, June 2013, who indicated surgery would not be my best option, and he would not do surgery. Last week, March 19, 2014, I contacted him again explaining that meds weren't working and the unrelenting 10+ TN pain. He sounded more confident in doing the surgery and recommened it as soon as I was ready. The 'lucky' part...I have a brain tumor that he might be able to remove stopping the TN pain. Should I look at this as a 'positive' since there is a probable cause? There is a 75% rate that the pain will be stopped, leaving 25% chance the pain is still here or worse. I ask 'what then'...he responds "then we need to deal with that if the time come". I don't really know what that entails though I'm sure he must have 'back-up' plan. This neurosurgeon is the 'premiere' one in the U.S. All my other doctors agreed. Now what? I can't tolerate/function/live with this TN anymore without ANY relief. My 17 year old son is in his Junior year of high school, looking at and preparing to visit colleges (with me) this summer. I don't know if waiting will is going to be a choice...a catch 22. Either way I might not be here for him...literally. My boyfriend is trying to be supportive but admits to considering breaking up because of my 'illness' never knowing what to expect...I wasn't this bad until December 2013, we started dating October 2012. I understand him which is the sorry/sad part. My son has had enough of not having a mother and coming home to this everyday. I know only I can make this decision but FEAR and UNCERTAINTY puts me in an emotional phsycological downward spiral of ...I don't know...all I know is that as I write this I can't even speak to him due to the intense pain. If I attempt to push through the pain I go into a 'down on the ground' pain that won't stop. I don't know, the inability to eat, drink, speak...
btw…I do trust this neurosurgeon, which doesn’t come across in this posting. I’ve had other opinions, etc. He is a wonderful person and world renowned as the one of the ‘best of the best.’
It is a tough situation, Prudence, and definitely hard to see the "lucky" part right now, but I hope that indeed you will have good fortune and be pain-free some day. Normally, I would recommend getting a second opinion before going ahead with surgery, but I can imagine that waiting for one would be difficult under the circumstances. I wish you the best, whatever you decide!
Your situation is somewhat like mine was.I had ,not a tumor,but a AVM causing the pain.Had cyberknife to stop the AVM but TN came back hard and worse than ever.I had gammaknife to treat the TN last July.Got my fingers crossed it lasts.So far so good.I've often thought i was lucky because a burst AVM is a stroke that often causes death.If not for TN,i never would have known until it was possibly too late.Go for the surgery.Best to you.
With your quality of life, I don't see that you have an option. You will be trying this with a view to improving your life for everyone's sake. Personally, I believe it's a risk worth taking BUT ONLY if YOU can face the possibility of its risks. You must answer that yourself. Best wishes. Can you chat some more to the professionals for any reassurance?
Prudence said:
btw...I do trust this neurosurgeon, which doesn't come across in this posting. I've had other opinions, etc. He is a wonderful person and world renowned as the one of the 'best of the best.'
Prudence, it is already so hard for you. Your pain sounds so intense; your journey so arduous. Take the surgery. Yes there is risk, but there is also hope. Focus on the hope. Good luck!
I believe its only a decision you can make,really take all the advice you can get and then weigh all the pros and cons, I too know pain as most of us do,but we all want a pain free life, if only we all knew the answer,
Oh wow, on the positive side, your Suregeon is optimistic, that is a plus. You have a great option. A Doc who is knowledgeable . You are in a good place!! Now for the men in your life to support you!! Regular MVD Surgery is only considered 70-80% effective. But it’s the best option that TN’ers have.
I will cross my fingers for you!! I am 9 months post-MVD, pain and pill free. Each day is a gift! 5 years of type 1tn pain, caused by 2 compressions.
I wish you strength, health, and pain free days!!
At least the tumor was benign. Right after my MVD I was in recovery from a brain surgery and a man was across from me recovering from his recent surgery. His doc came in and told him, with his sons standing around him, that he could not get all the cancer because of the way it had spread and that he put markers in for a gamma knife to follow. All of a sudden life came into context. I know that I am blessed. My heart goes out to you and I hope they can help you soon. There is gene research behind done as we speak that hopes for a cure within 7 years. That’s a long time with this but, at least it’s a light at the end of the tunnel. Unless you’ve had this disorder you can’t understand how much it affects your life. I agree about not pushing through the pain. After a jolt or two I am quiet for a minute and I don’t want to move because of what happens when I do. People ask if you are Okay and don’t understand the silence? You have understanding friends here. Wishing you the best, hang in there.
John
Hi Prudence, I read this over several times and each time I came away with the same conclusion from reading your words-- that YOU have decided what is best for YOU right now. I am so sorry for your pain, many of us understand exactly how you feel. Take care and try not to let yourself spiral down any farther. We do care and you are not alone.
I am truly sorry to hear you do not have a strong strong support group at home. I to went thru this with my family until I sat with them right before my surgery and had them read up on trigeminal neuralgia. My pain was soo bad until I changed neurologist and found out the meds I was on was cancelling out each other. My new neurologist changed my meds and almost immediately I was able to brush my teeth and eat and drink water. He adjusted my tegretol and took away my dilantin which was cancelling my tegretol to help with my pain. He saved my life. I did have MVD surgery done but unfortunately it did not work. But, my family has become so much more supportive after realizing how much I was suffering. I hope after your surgery they will see how brave you are. Good luck with your surgery.
Dear Prudence, my beloved mother had a similar tumour. She had surgery and was blessed with over 5 years of GRAND health! It was completely worth it, she always said. Not all of her tumour was reachable, and after 5 years the tiny bit which was left began to grow... and finally, took her from us. If yours is indeed operable, DO IT. Do not waste a moment...... my prayers are with you.
Dear Prudence, I had MVD on Feb 17th. Prior to my decision to have surgery I worried about and questioned whether or not it would help me. The more I thought about it I kept coming back to knowing that, for me, MVD was my best hope for relief. When I realized and accepted that I became at peace with the decision. Even though my pain is not all gone I am substantially better and getting better. I have been completely off of Trileptal for a week. If I had it to do over again, I would do it without hesitation. I believe I made the best decision for my family and myself. I am fortunate that I don't have any other medical conditions that would make the op more risky. I too have sturggled with the affect my TN has had on my family. As others have written, I think it will be very helpful to your loved ones if they read some personal stories of other TN patients. They can read about the techicalities but reading about real life for other people w/ TN might help your loved ones have a better understanding of what you are living with. My husband has been supportive all of these years but it really wasn't until the few weeks before and since my surgery that he has come close to grasping how my life has been.
It is great that you have so much confidence in your surgeon. Be sure that he knows how much you are struggling with your decision so he can help you make the best choice for yourself. You are having such a hard time right now maybe it would help to write a note rather than speak.
Hi Prudence,
Wow, what a story.. My heart goes out to you. May I ask who this neurosurgeon is? It sounds like you are in horrible, horrible, intense pain that I cannot even fathom. My first thought was get a second opinion , like others mentioned but then you stated, you have done that and he is the best of the best. Personally, I would have no question unanswered, I would want specifics, for instance, when the dr. stated, "there is a 25% chance the pain is still here or worse" and you asked "what then?" an answer of "we need to deal with that when the time comes" would not be enough for me personally, I would want a more specific answer... But I am typing this with only a level 3 pain right now... If I had extreme pain like you, I would probably say,,,,, Yes, do whatever you want...when can I jump on that table.?. Like so many others stated , this is Your decision, and nobody can make this extremely important decision for you. I will say a prayer for you that you make the right decision :)
Have the surgery now now NOW! You desperately need it, without it it sounds as if you don’t have a life anyway you poor thing - be brave and take the step, remember God loves YOU and he’ll be with you every step of the way, think of how amazing your life could be again without this pain and focus on that. Be strong for your family and loved ones. Good luck! Let us know how you get on. God bless you.
No, none of us are lucky, or we wouldn't be here. That said, the positives in your life still far outweigh the pain, but the pain is literally "in your face" so it's tough to keep perspective. I've battled this terror since 2001 with 5 different meds and 2 different surgeries, and I personally was euphoric on the morning of each surgery. l was like, well, being GONE can't be much worse than THIS, so bring it on. Roll the dice. And the truth is, even though the number of people who have complications from surgery can't be dismissed, it is nonetheless SMALL, especially nowadays. And a recent closer look at our community shows that the number of us who "off" ourselves is also very small... What that means, just like the book "Striking Back" says, is that the vast majority of us DO get a handle on this. Regarding surgery: Remember that all data on success rates and complications for the various surgeries is from the PAST. I too was "refractory to medicine" and I had an MVD in 2007 which worked 100% for 13 months, but then the pain came back, and I was devastated, but the new pain was in triggered, single-shock fashion, instead of unprovoked electric machine-gun fire. And guess what... Post surgery, Tegretol worked! (Moslty). Each surgery, whether it works or not, sort of "shakes things up." Turns out that this not uncommon: A surgery might fail to cure the pain, but can frequently make meds work. Who knew? Yay! Later, in 2013, when things grew back to intolerable, I tried Gamma Knife, and it lessened my terror by say, 60% - And I'm thrilled! I'll TAKE it! And I enjoy being the toughest person I know. I enjoy not caring about being hungry, or caught in a downpour. I enjoy the fact that when I stub my toe, or smash my shins, or burn myself - It doesn't even interrupt my sentence. And the people around me freak out and ask "Doesn't that HURT!?" And I say, well, definitely, but on MY scale, things are different. Anyway, whether it's meds or surgery, or waiting for remission, or waiting for the next modern drug, please keep hope! If your relationship with your boyfriend is turning out not to be strong enough to cope with your terror, then in my opinion, it's not a reflection on you nor him, but simply the revelation that your total package and his total package were not a match. In closing, we all have our little things we've developed over the years that either work, or have been timed so as we think they work, and here are mine: Stay in warmth, avoid stressful situations (even to the point where, if that forces you to let go of something/someone you loved in your non-TN life, well, that's the cost of doing business), stay hydrated, try to identify and avoid any trigger foods, get plenty of rest, preocupy yourself (physical stuff works best for me), and seek out things that make you laugh, and be willing and active in your trial and error process with drugs and surgeries. Statistically speaking, you can only do that for so long before something will dramatically take the edge off. And you need to enjoy every moment you're not in pain to the fullest, and totally forget the fact that it's probably coming back. Don't let the pain ruin BOTH times. Best of luck to you.
I total agree
I'm kind of curious as to what changed the surgeon's mind. In any case, I've got TN2 and I can only wish that there exists a procedure that might stop the pain. You've apparently got a top surgeon and your other doctors are all on-board. If I were in your position, I'd be scared, like you, but I'd like to think that I would act out of hope -- you know, the yellow thing with feathers:) Keep us up to date on your decision. Be strong.