Afternoon! I'm new to the site, it means so much to me to know that you really understand what TN/ATN really feels like. Through my search I've found others near where I live in Northern CA. I hope to have you all as friends. I have had ATN for 16yrs - I am a member at Kaiser Permanente in Sacramento/Folsom/Roseville area. I have Dr. Conrad Pappas as my neuro and since my pain once again has over powered my meds I am up to 2100mg of Gralise once a day and Norco 5/325 at 1-2 tablets as needed. I will be seeing a Neurosurgeon Dr. Huy Dhong (UCD) this afternoon. But most of what I am reading states MVD doesn't work on ATN. So I'm not sure about this, please if you have any experiences, knowledge or suggestions I'd love to hear from you. I need to learn more about the pro's & con's and my options. Hopefully there have been some new advances!
I'll update you all, later this evening. May you all have "MANY" pain free days!
Dear Jenna, I hope you find the answers you need. I am rather new here too, and am finding my way around. I see that you are with Kaiser. My insurance is also Kaiser Permanente, but in San Diego. I have seen a neurologist and she diagnosed me with “facial pain” and prescribed medication to take. I’m just not sure that she has a full understanding of my problem so I am awaiting another appointment for a second opinion with a different neuro. Do you have any advice as to how to navigate if I need further expertise? I am so new to all this and very frightened about the future. Over and over again, I have read that it is crucial to have doctors who are experienced specifically in TN. I see that you are going/ or went to UCD today. How did that go? Thank you, Jackie W.
hello TN family....Just checked in as I have been attacked with several health issues...which means my social calendar is consumed with doctors appts.lol
Jenna and Jackie, you ladies have my inspired with your entries...We may not have the answers but being connected and the large contact sources available certainly keeps our Interest and support... Be encouraged and take one day at a time. You are not alone. Blessings, Grandma Honey in Montana
Hi There, Just reading through your comments and I wanted to tell you to check the Doctors tab on your page for the recommended specialists in your area or close. I have Geniculate Neuralgia and travel 4 hours to my neurosurgeon of 1 year. She has high success with Gamma Knife for TN and tried it on me for my Geniculate (only 2nd GN patient) as she has success with her 1st GN with GK. Mine was cause by shingles so it didn't work but she has held my hand tight and we are trying new things. I have control with medication for the most part but am hoping to find a more permanent cure.
I am Laurel and would be happy to help you around if you need it. Feel free to check out my page and I hope you'll accept my friendship.
I have TN and ATN and had MVD in May 2013. I did have identified areas of compression on MRI so they felt the surgery would help. Additional areas of compression were found once they got in there as well. Unfortunately, though the pain was intermittently muted for a couple weeks after the surgery, soon after all the pain returned and it was not successful. I don't regret having the surgery because I would always wonder but it didn't have the ending I was hoping for. Feel free to message me if you have more questions about the surgery or anything else! -Laura
welcome to the site .You will find a wealth of information and caring people that understand your suffering .I am going to see a neurosurgeron in march myself at Vanderbilt. Crossing my fingers ...... And good luck with your neurosurgeon appointment
Hi Jenna I am also new. I have been reading it for along time, but have just recently signed in. I would get some more opinions about MVD treating ATN as you are doing. Stay away from the GK...Of that I am a strong advocate. Please see if you can get settled on an opioid w/o Tylenol because we are chronic not acute and you will eventually do some serious damage to your liver. Remember to always be your own advocate.Good luck to you on the sight. I am stumbling, getting lost, but keep typing!! All the best, eva
If you haven’t already done so, please read the link featured in the discussion "Everyone with TN should read this"
Excellent up to date information on all things TN.
I had MVD in April of last year for my predominantly Type 2 (atn) pain. Type 1 features were present as my pain progressed and became med resistant.
Although the stats are slightly lower for type 2 and MVD, it is a viable option.
MVD is the only surgical procedure for TN that does NOT further damage the nerve and the success rates and length of relief of pain are longer.
Choosing a procedure is a personal choice, a decision that you should come too after much research!!
There are no guarantees with ANY of the procedures.
My situation is unique in that I have bilateral TN, my decision to have MVD was because my pain was progressive and med resistant. I consulted with a few neurosurgeons AND researched for months both reading personal stories as well as research papers from around the world. This decision was not made lightly.
Although I had 3 significant compressions that were successfully decompressed and I received 4 months pain free my pain did increase again. Not enough is known why certain procedures work 100% for some and only a little for others.
In my case I believe the following statement I found in the Brain Oxford Journals applies…
" Failure of MVD to relieve symptoms is most common in patients with long-standing disease, in whom severe local depletion of oligodendrocytes and astrocytes may prevent effective remyelination after compressive surgery"
(TN pathology and pathogens)
That being said, I still consider my MVD successful. My TN is slightly better than it was pre-MVD.
I’m confident a true cause and a cure are on the horizon…this factored into my choice of MVD as I did not want to cause any more damage to my nerve then already exists from the TN. Again, my personal choice.
Am I optimistic? You betcha, I have to be…
(( hugs)) Mimi
Dear Jenna, Welcome to the greatest place to get information on this horiffic disease that we are all afflicted with. There are so many wonderful people on this site that are oh so willing to help one another even though we are total strangers.
Remember that each one of us is different (even though we suffer from the same thing) and what doesn't help one may help another. Also, many of us that are on here on a regulare basis have had failed procedures as the many who have had successful procedures have gone on livin' life. There are success stories on this site that you should also read as they are inspiring.
Read, read, read, ask ALOT of questions, and educate yourself. Don't just "settle" for a doctor for convenience - you ONLY want the BEST!