Many of you know that I have been producing a spreadsheet of doctors who have successfully treated or diagnosed our members.I am presently working on an update. I think I have picked up all of the more recently mentioned doctors.
I will post it in about 2 weeks.
I have BIG CONCERN ABOUT THIS SPREADSHEET AND --I FEEL A NEED TO EXPRESS IT.
We are all in a lot of pain or we would not be on this forum. Because of our pain, we are naturally looking for whatever option we can find to eliminate the pain. We have to all be very aware that surgery is thought to be successful only 50% of the time.We all know that surgery is at this time the only possible permanent solution, but a surgery that works on one member may not work on one of us. Some surgeons do external some only intra oral. Some of us believe that external is the best way to go, a lot of us have chosen intra oral. In fact, more of the doctors willing to do surgery opt for the intra oral surgery. Some of us find that intra oral has not been wholly successful and look for someone to re do the surgery and believe external will be the way to go. We have received hope from the successes that some doctors have had on our members and we think that these doctors will provide the miracle that we want. However, I have realized that even our Rock Star doctors are not always successful. Some of our members are worse off after surgery and do not want to sound negative and especially do not want to comment negatively in public. I must say that all our doctors are human, like us they have bad days, react badly in a consult or just have a personality conflict with us. There have been some disappointing surgeries.
I am saying this because I feel a little responsible when a surgery goes awry or a doctor on the list that I produce performs an unsuccessful surgery. Please be cautious, do your homework, some of us have been privately in contact with members who have had issues and that is okay. I encourage you to all be wary of surgery no matter how successful the surgery has been on others. I believe that ultimately most of us will choose surgery, but sadly some of us will not be happy. This makes me feel very sad. This syndrome involves our intracranial nerves and no one knows better than we about the pain that we feel. It is real and it can be treacherous. Lots of us have found a lot of relief and the rest of us want that relief, but I still urge you to all use the spreadsheet as a starting point.
If you find a new doctor that is not on the list and you have a successful surgery, by all means mention that doctor. Our choices are few, but yours may be the one that has the right amount of compassion, knowledge and experience to give us honest opinions.
Once you have found a doctor on the list, please do not just assume that the doctor listed will be a miracle for you. Check with members who have mentioned your doctor. You can put the Doctor's name in the advanced search box at the top of the discussions window and you will find the times the name is mentioned. From there you can message the members and get information from the members. If you contact a doctor, you may find that he no longer does Eagles surgery or that he is moving or has moved to another location.
Also, remember that nerves are often misleading. We may have surgery, have no pain, but after the nerve heals the pain comes back or the opposite. We may have nerve pain until the nerve heals. In both cases, the healing process takes up to a year. So we hope you all stay with us for a year or two after surgery to keep us updated.
THE SPREAD SHEET IS JUST A STARTING POINT FOR YOUR SEARCH, NOT A GUARANTEE TO HEALING THOUGH I SURELY WISH IT WERE AND I SINCERELY HOPE WE ALL FIND RELIEF. I TOO STILL HAVE SOME ISSUES. MY DOCTOR IS NOT LISTED BUT MY INTRA ORAL SURGERY DID BRING ME RELIEF AND I MAY CHOOSE TO LIVE THE WAY I AM. THERE ARE WEEKS THAT I AM SURE THAT I WANT A REDO. I AM ON THE FENCE MYSELF.
I hope that I have offended no one and that our moderators approve of my message. Until we have the completed doctor recommendation link, I will try to keep our spreadsheet updated. Thank you all for your support and I hope we all take time to thank Ben and Scott and our moderators and the IT guys that work with us and for us.