Today is my 2nd Anniversary of my MVD at UPMC. This was an awesome day because it marked the beginning of my new pain free life! I am feeling incredibly blessed. I stay active in this forum to give some hope to those suffering with this horrendous pain and because this group was so helpful to me immediately prior to my surgery and after with words of encouragement and tips on what to expect. I stand firm in my wish for surgery to be a more obtainable and encouraged treatment. Not everyone can be helped the way I was, but a huge percent can be. It sure beats the suffering and meds. I encourage everyone to at least go for a consult with a very skilled neurosurgeon who specializes in MVD. See where you stand and go from there. I was more than discouraged to do that and am just glad I finally had enough and took control of my own life. I hope you all have a great day:)
Congratulations, Laura! I am so happy you are pain free, and I wish the same to all of our members.
Thank you so much for your comments. My mother had Gamma Knife 1 1/2 years ago and now the pain has returned and it is very intense. We are currently in the process of looking for an experienced neurosurgeon. The doctors we've dealt with in our area don't even mention the possibility of MVD, but we are convinced MVD is her only chance at long term relief.
Great encouragement, Laura! I am coming up on my year anniversary in December and you’re right. There is nothing like being free from GPN pain! Thanks for staying involved and letting people know there IS an option.
Congrats!
So happy for you Laura- mine was May of this year after three years of a horrible existence to be able to speak, clean my teeth without I tense pain is indescribable. It was a scary operation but thank god successful in my case
Can any of you who have had successful MVD surgery suggest a surgeon and/or hospital? We are in Georgia and have dealt with the surgery center in Augusta Ga. No success there...so we are ready to travel.
Hello Laura. It success for you and your neurosurgeon. You have got your life back. I had MVD of glossopharyngeal nerve 18 months ago in Toronto. Did not work. I am having another one on November of this year 2014. I have pain on the back of the tongue, half of soft palate ( right side) and I feel like I am having pain in carotid artery which makes me weak in my legs and sometimes the whole body. Could you please describe your pain that you had. Except ear pain that you had from geniculate neuralgia. What was the pain caused by Glossopharyngeal nerve. IT is success to beat this condition so I congrat you.
Hello everyone,
My neurosurgeon was Dr Michael Horowitz who now practices out of Butler Memorial in Pittsburgh. I highly recommend him and encourage anyone who is interested in this surgery to track him down there. At the time of my surgery he was at UPMC, which is a fantastic hospital.
My pain was on my left side back of tongue, left tonsil area, and my left throat…kind of in the carotid area…actually in the beginning before diagnosis I was sure my carotid was rupturing.
Thanks so much Laura!! I'm going to look up Dr. Horowitz. I'm so happy for you that your surgery was a success and I wish you all the best. One of the hardest parts of this disease is that it is so rare, misunderstood and misdiagnosed! It's not a pain that can be treated with conventional pain meds and the "outside world" can't understand that. So thankful for forums like this where we can connect with each other.
pamcliff said:
Thanks so much Laura!! I'm going to look up Dr. Horowitz. I'm so happy for you that your surgery was a success and I wish you all the best. One of the hardest parts of this disease is that it is so rare, misunderstood and misdiagnosed! It's not a pain that can be treated with conventional pain meds and the "outside world" can't understand that. So thankful for forums like this where we can connect with each other.
Someone on this discussion asked for the surgeon who performed my MVD of this year. I seem to have lost that person. Here is the info requested. DR. MOJGAN HODAIE at TORONTO WESTERN HOSPITAL. TOEONTO ONTARIO CANADA. Good luck
Congratulations, Laura! I know what an amazing milestone this is. I had MVD a little over 5 years ago now and have been completely GPN pain-free all this time. My surgeon was Dr. Stephen Haines at the University of Minnesota Fairview Hospital, and I would recommend him as well. I remember being extremely frightened to undergo the surgery, but it was the only way to get back a life worth living. It was the best decision I've ever made. There is hope out there, and I wish everyone success in finding the right treatment for them.
CONGRATULATIONS LAURA!!!!!!!!!!
God Bless,
Sandy
Congrats, Laura
I will be having MVD at Emory University in Atlanta Nov. 7. I will post updates, but don't expect them right after. Friends, please say a prayer that day.
pamcliff said:
Can any of you who have had successful MVD surgery suggest a surgeon and/or hospital? We are in Georgia and have dealt with the surgery center in Augusta Ga. No success there...so we are ready to travel.
Best of luck with your surgery, Leah!
Best of luck Leah! I will definitely be praying for you that day...I've marked it on my calendar.
Can you tell me the name of your surgeon, or how you came to be referred to Emory?
Thanks!!
Please contact me at pchitwood07@yahoo.com, and I will give you more info.
Thank you for your prayers--now and in the future.
pamcliff said:
Best of luck Leah! I will definitely be praying for you that day...I've marked it on my calendar.
Can you tell me the name of your surgeon, or how you came to be referred to Emory?
Thanks!!
Hi hopeful....may I ask how long your waiting period was to see this doctor, and again how long was your wait after he first deemed that you required surgery, until it was performed?? I sent you a "friend request" but you have to do so in kind so we may speak with private messages. I am in London Ontario & in need of desperate help. All they want to do here is try to treat with meds gradually but my pain has broken through the current meds and is indescribable. Yet I will not see a neurosurgeon until late February, so any surgery if I'm lucky, next spring at the earliest. Thanks!
hopeful said:
Someone on this discussion asked for the surgeon who performed my MVD of this year. I seem to have lost that person. Here is the info requested. DR. MOJGAN HODAIE at TORONTO WESTERN HOSPITAL. TOEONTO ONTARIO CANADA. Good luck