Dear Tiffany,
Thank you for sending the link to your story. Yes, perseverance is key in finding what will, or will not work of each of us suffering with this life-changing condition. I am disheartened to read that this did not pay off for you in the case of undergoing MCS.
Whenever I read about the procedure, I thought of the mechanics of how it works and, even before reading your story, had fears of possible complications such as what you experienced.
I mentioned my interest in MCS to my Pain Management Specialist upon my last appointment, as like you, as a Type II patient, it has been deemed that the usual procedures, both surgical and non-surgical, would, in all probability, be of no use.
I have discussed this option with my very close friends and family, well, and now with those here at LwTN, and do believe that I should try to stick it out on medications that I would rather not be taking, in order to raise my two girls into adulthood. My youngest is 8.
I have tried, I do believe, every offering of medication generally considered effective to the Trigeminal Neuralgia patient within the last several years. The only relief I have known has been through opiate therapy, which is why I began the group her, in order to try to de-stigmatize the use of these medication for those whom they DO help. I am thankful that they are of help to me. Unfortunately, I've read of far too many cases where nothing helps.
I think we all know, though, what the problem is with the continuous usage of opiods. It is a staircase, a game of relief vs. tolerance. I feel like my pain is racing with my tolerance to every new medication, at times. I live with the fear, month to month, that something will happen, laws will change, etc. and I will no longer be able to be prescribed the meds that, at this point, allow me to be a mother.
With the last prescription, at first, I had such success, I thought I would be able to return to the workplace. However, tolerance once again caught up with me and the pain became such I have doubts about being employable. Right now, I believe my children need me anyway, and I've the means to stay home, but I miss having a career. Also, my family would be so much the better in the long run for me working now. I would be able to do things like help with buying cars, paying for college, not to mention saving for retirement.
My life has not been one which was adorned with achievements from a young age, as yours was. I marvel at all you were able to accomplish to be so young. I, on the other hand, married young and pulled myself up by my bootstraps and was able to bring my impoverished family into a nice home with lots of amenities by my mid-twenties. It is no great feat, but it took perseverance, and a lot of hard work/long hours. I feel I have so much to offer the world. My dreams, like the dreams of many others here, have been cut short.
The thought of MCS is an enticing one. However, after reading your story, I know that I cannot put my life with my daughters at risk, even if it is a very small risk. Their father was killed in a vehicle accident in 2006. I am all that they have, really. They are heavily dependent upon me.
Well, I have made this reply very wordy, as I have become a bit overwhelmed by emotion. I do apologize for that. I am tempted to delete and begin again, but I will let it stand. As I have stated time after time whenever I do this, I type faster than I talk.
Yes, for anyone reading this, who is an ATN patient, I think you would find Tiffany's story of great interest. Here is the that link again, http://www.facingfacialpain.org/index.php?option=com_content&vi... .
Once again, I appreciate your response, as well as the others. You are the first person, besides our Moderator, Rick Smith, who has undergone this procedure. I have not yet asked Rick about his outcome as I would first like to give him the chance to know what that may be.
All the best,
Stef
Tiffany S. said:
Stef - I did. My story was written about at length on the Facial Pain Research Foundation's website. Here's the link. The info about my MCS is toward the bottom. http://www.facingfacialpain.org/index.php?option=com_content&vi... I have Type 2. I would caveat my story by noting that my experience was highly unusual - the chance of infection is only about 3%. There have been others that have had excellent success with MCS - I did too for that matter. I just wish I had been able to keep mine.
Tiffany