Hi. It’s nice to find a group dealing with the same issues I am. My name is Nicole and I am 35 with 3 children. Here’s my story along with a few questions that I am hoping y’all could help me along with.
I started noticing pain deep down,what I thought was my ear, about a year ago. I thought it was due to some stresses that my life had been currently giving me. My 12 yr old daughter had just undergone surgery and had been in the hospital 3 times. So I wrote the pain off until it started to get worse. I went in to see my family doctor and he sent me to the ENT, everything normal, then sent to the dentist, x-rays normal, then sent me to the oral surgeon since I had some TMJ, everything ruled out, then physical therapy, which was very painful, then finally to the neurologist. It has been very frustrating. He diagnosed me with TN and I started on Gabapentin with steroids and muscle relaxers, it didn’t work so then he tried tegretol and it didn’t work. The pain kept getting worse and to top it off the Tegretol gave me excruciating migraines. So then he tried Gabapentin mixed with oxcarbazepine and 3 more drugs I can’t spell. I’m a walking zombie and none of it is helping my pain. I feel like my left ear is going to explode. It hurts to brush my hair. I put ice packs on the left side of my face. Nothing helps. Dr even had to admit me in the hospital because the pain was so severe. I had even been on morphine and it didn’t touch the pain. Now he has recommended me to a neurosurgeon. I will be seeing him next week. Problem is this diagnosis is not real commonly known in my area. I would like to know if anyone could recommend a surgeon that specializes in TN. I am willing to go wherever. Secondly any input on procedures that can be done. Surgery is my last option but I think I am the point of not having a choice. I have tried so much. I am literally bed ridden. This isn’t me. I am a successful business woman and very involved withy kids and I am not able to even get up out of bed right now. I haven’t for two months. Pain never goes away and they keep changing my meds so my body never gets use to any of it. Any help or stories of your situation helps. I am desperate. I am emotional and a huge mess right now. I just want my life back and this pain to be gone. It is so excruciating and my pain is constant. It never goes away. It is always about a 5 on the charts and sometimes it goes off the charts. I lay crying prayin for it to be relieved.
Thank you for taking time to let me tell my story. I have read some of yalls post and I see everyone suffers so much. If I can’t beat this then I know I am going to need as much support as I can get. I have read the failures of these procedure along with the successes. It all scares me greatly in knowing what decision to make.
I flew from Missouri - to have surgery with Dr Ken Casey in Trenton MI.
He learned under inventor of MVD and has done thousands
Communitcate by email first - does many out of towners - then see your neurologist for physical check up after and email scar photos to Dr. Casey and your personal progress report.
If you have TN1 - odds are slightly better for you for MVD - if this is the surgery you are pursuing. I researched for a year, because I hated the meds, before I made my decision. I found every video, remcommendation, everything I could read on the site of the surgeon.....very personable which helps when you are terrified.
The more knowledge you have - the better off you are. Many go to Hopkins or Mayo - but those take way longer to get on the table.
Nicole I'm so sorry to hear about what you're going through but know that you're not alone. If you have type 1 TN I cannot speak highly enough about the Johns Hopkins neurosurgery program and Dr. Lim in particular who did my MVD surgery back in November. I started seeing him for consultations back in May of last year and finally gathered up the courage to schedule the surgery in September. Two months later I was on the operating table. It was scary but I would do it again in a heartbeat. There are risks that you need to weigh but any good neurosurgeon would cover all of that with you.
I had the micro vascular decompression surgery done at Virginia Mason Hospital in Seattle, Washington. It was successful, but I still have pain that medications help with. At least now, the pain is mostly under control and my life is better. Dr.'s name is Faroki. He is in my opinion, excellent. You will get better. There is help available for your problem. Hugs, but not near your pain. I " ear" your pain too. Oh, when ER doctors try to help ease it, all that did for me was not help. When a neurologist became involved with my care, help began to happen. I am three years into this condition. I try now not to be helpless, but right now you are, and I am glad to hear you have help and understanding. Hold on…it will get better.
Bless your heart! I think we all could tell you a story of how this devil has taken so much from us - how we have tried new meds or treatments...We TRULY understand when no one else does or even could. My family is SO very supportive; I am blessed - but sometimes they just don't 'get it' that Momma "just can't right now". I am still working (I teach high school) and it helps so much to have the support this sight gives! ...some days, I'm just WAITING to go to bed so I don't 'feel' for a while. There has to be an answer for you!! Don't give up - I do believe the Lord IS in the business of answering prayers and we will surely be praying for you!!
Nicole, Oh my sweet friend, I know how low you are probably feeling. At times when the pain is so severe, we can't think straight. I am hoping that others on this site may have the pain in your area. It is strange that nothing is touching the pain. But, as you read, you can see that everyone has a certain RX that works for them. I will pray for you. You aren't alone, even though it may feel as though you are. You definately need to go to a TN specialist. I think that most neurologists don't have enough patients to help those with TN. At least that is just my findings. As Red mentioned, see if someone on the list is in your area. Wishing you relief, and a big hug if it doesn't hurt.
Sorry to hear you have been through the ringer! I just wanted to tell you I had also tried various medications that left me a zombie and had their side effects too. In 2008 I went to kaiser Redwood city (1-650-299-2290 ) CA and saw a wonderful neuro surgeon named Dr. Allen D. Efron. He discussed possible MVD surgery and also informed me of the cyberknife surgery procedure. After long consideration of my options, I chose to have cyberknife surgery. He referred me to Dr. John Adler at Stanford medical center. In may of 2008 i had tn site treated with cyberknife. i still had pain for about 3 months after but was able to ween off meds. About 12 months later i experienced numbing on the right side of my head. I get a tingling pulling and often itchy sensation that is constant but no pain. I also sleep with my night guard mouth piece in this seems to help with tenseness on that side of face.
I really hope you find a path through this; I have no real insights or any silver bullets, but I do know that this site has been amazingly helpful. You won't see my name on very many discussions, because I mostly just read here, but I can tell you that you will find a ton of good research-based info, good anecdotal info, and plenty of resources to look for info on your own.
Bless your hearf for being such a trooper as you walk through the trial and error of medications. Don’t feel like it is time wasted because it is very important to know what does not work in your body. It would be a good idea to keep a notebook handy to jot down the level of pain yoiu’re having; what meds where taken; when; and finally, how you responded. Nik, it is almost like a replay of my life ten years ago March 23. I was jusf 37 years old, with three kids, nine, three and almost two. The pain came to visit one day in the form of the worst migraine ever…three days later, I got up out of bed, went back to work (in my home business), and bam! Ear stabbing with electrical shocks down my face upbruply stopping at the mid-line from my forehead down to my chin. (You can read my page for the rest of this story.) i jiust wanted to say that after the MVD performed by Dr Carson at Johns Hopkins, the harsh, second stage labor level of pain subsided after I woke up from surgery. If I had not burnt the nerve with radiation, not one, but two times, I don’t hesitate to say, I’d probably be pain free. Gamma Knife is great for older people w/ this disease because their nerve does not grow back. But in the younger crowd, many times the nerve grows back and it is damaged. GK seemed a safer option than to open my skull, but I had read too many horror stories on MVD by docs who simply were not sucessfful in MVD surgery. Please, take your time to really get this pain harnessed. Then you can think clearly with your hubby and loved ones on a strategy. We planned for the worst, and hoped for the best. Carol James is the PA flr Dr Carson and can be very helpful for information. Dr Carson heads up the pediatric neurosurgery dept. He makes an exception for adults with TN because of the severity of the pain we deal with daily. There is comfort in information about our problem. When the mri is done, they can be more acurate in dx. You will be in my prayers and if you’d like to msg me, please feel free to do so I am truly sorry that your having a rough time. This road is beyond hard sometimes, but there is a path to a thriving life, regardless of what type of health challenge comes to visit. I never knew the depths of love my hubby and children had (have) for me until I was broken. And, when that happened, I realized that I was breaking in the Master’s palm…He had a plan and it was a future and a. HOPE. This is what I can rest in, knowing He adores us and will show us a path that leads to pain relief.
Sincerely,
LyndaS
wrigley said:
I really hope you find a path through this; I have no real insights or any silver bullets, but I do know that this site has been amazingly helpful. You won’t see my name on very many discussions, because I mostly just read here, but I can tell you that you will find a ton of good research-based info, good anecdotal info, and plenty of resources to look for info on your own.
Wow! You're in my thoughts! I am just starting the frustrating journey, but you have been a hero and teacher of this crippling disease/disorder. Thank you for your story and please keep us updated.
Thank you everyone for so many encouraging words and great information. I know I have a long journey ahead. My pain is unrelenting and I’m praying for answers. It’s just so hard to know if I am going in the right direction. Everyone says well maybe you should try this or this but I’m exhausted not only physically and emotionally but financially. I don’t have insurance and no insurance will cover me now. It’s all so upsetting. I have never been sick or had any surgeries a day in my life until this hit me. I go see the neurosurgeon Minday and I’m anxious yet very nervous at the same time. I’m afraid he will tell me he can’t help me or that surgery is my only option. I live in Amarillo, Tx and this surgeon is known to be the best but not sure if he is familiar with MVD. I would have to travel over a thousand miles to John Hospkins or Mayo clinic. Dallas may have someone but I have failed to find out “who”. I know all of you suffer greatly too and I pray your pain is relieved just the same as mine. I don’t understand why God has me on this journey right now but I believe He has a purpose and a plan for me. Thank you all again for all the love and support! It truly has helped me through my days!
Nikki, our recommended doctors list (see menu above) includes a significant number of practitioners in Texas (See "find a doctor" in our menu). If the physician you are seeing for a possible MVD hasn't done at least 30 of them in the past year, then you should look for somebody who has gone through the learning curve. Some of the people in our list likely have. Likewise, if you'd like, I can put out a call for doctor referrals DIRECTLY by email to all of our members in Texas or within 200 miles of your location. Just let me know.
Red that would be great. I have looked at the list and researched most of them, not all of them yet, but most of them are not in Texas anymore. Any help would be greatly appreciated for a Neurosurgeon that specializes in TN. THANK YOU!
Richard A. “Red” Lawhern said:
Nikki, our recommended doctors list (see menu above) includes a significant number of practitioners in Texas (See “find a doctor” in our menu). If the physician you are seeing for a possible MVD hasn’t done at least 30 of them in the past year, then you should look for somebody who has gone through the learning curve. Some of the people in our list likely have. Likewise, if you’d like, I can put out a call for doctor referrals DIRECTLY by email to all of our members in Texas or within 200 miles of your location. Just let me know.