My daughter lives in Perry, MI and is just beginning to have to deal with TN. She has been having unbearable episodes of stabbing pain sometime 7-8 per day. She does not have a family physician, but was able to get a referral to a neurologist from her oncologist, but he not available for a month. Her neurologist told her yesterday he can not help any more. He will not offer pain medication treatment or refer her to a pain management clinic. He told her to find a family doctor or go the emergency room. Every family doctor she calls says they can’t see her for 6 months. My daughter is calling me writhing in pain and I don’t know what to do. She has three beautiful children and is in so much pain, she can barely care for them. I purchased the book recommended on living with TN. Does anyone know of a “family” doctor in the Lansing area that has some experience with TN? I feel soooo helpless to help her and this was the only thing I could think of…Thanks so much in advance!!
Hi Lindsay’s Mom, my name is Tiffanie. You are amazing to help your daughter through this horrifying battle. I would be thrilled to give a positive reference to a Neurosurgeon in Trenton. Several other forum friends used him, that’s how I got his name. I don’t know how far she is from Trenton, but I flew from Florida to have a consult with this amazing TN Doc!! Dr Ken Casey !!! Call his office, see if they take your insurance, email him, send MRI images, have a consult. He is a Surgeon, but he has dedicated himself to finding a cure for TN/ATN/ spasms. He knows all the treatment options, isn’t just straight to the operating room table. He has been fighting TN for decades, is brilliant, and compassionate. It was amazing to sit in his office and get answers from a Doctor instead of shrugs and more scripts!! Feel free to contact me if there’s any questions that you have.
I am Type 1 TN for 6 years, ready to celebrate 1 year post MVD! No pain, no pills. It was a long, painful 5 years swallowing pills, and losing out on my life with my young kids.
Hugs to you for helping her get through this!
I second tiffanie… I flew from Missouri, got in in six weeks… But it can be less for just a consultation
Email, call, find hour way to dr casey!! Saved my life…no pain after 2.5 years!
I triple that recommendation . . . Dr. Casey is wonderful! He did my MVD last October and I am also pain free and med free after suffering with TN and it's meds for 10 months. Dr. Casey is so knowledgable and compassionate. He co-wrote the book "Striking Back" that was my bible during those months. I traveled from Indiana to see him.
I am responding to my own request....my 32 daughter is still in need of a "family doctor" in the Lansing (east side Perry). She has an appointment with Dr. Casey in Trenton in three weeks which is great, but at the moment she is in monumental pain. She has 4 young children to care an I am soooo very worried for her. She needs a family doctor who does not have 6 month waiting list and prescribes pain medication to help her get through until she sees Dr. Casey. We did go to an alternative medicine specialist who was a friend of mine and very familiar with TN and TMJ and she said that Lindsey's case was the worst she had ever seen! Lindsey does not have a family doctor and would need one even with the Dr. Casey appointment. She has Blue Cross Blue Shield. I called her yesterday and all she did was cry....today I saw this post on her Facebook page:
"Does anyone know of a good family doctor near me that doesn't have a 6 month wait for new patients? I just can't take this pain anymore. I am going to see a neurosurgeon in a couple of weeks, but for me being in so much pain that feels like an eternity. Plus I really need a great family doctor who I can go to for a referral. my stupid ex neurologist from msu told me i have to go see a family doctor for one. He told me I exceeded his medical expertise because i was not responding to the meds he was giving me, and then he stopped treating me. So he won't give me any referrals. Which is BS. I've been to urgent care and they turned me away. they said they could not help me. it's like they look at me because i'm so young they assume i'm just some drug seeker. when i'm NOT AT ALL. i'm a mom who just wants to get her life back. and because of what they see on the outside, and their assumptions they won't help me. i'm just tired of getting the dirty looks, and getting turned away. i have tried every at home remedy for my pain, aand nothing works anymore. it use to, but it's that bad that everything that use to work doesn't. i'm not me anymore. and i miss me..."
Thanks so much in advance for any help!
Blue cross should have a list for her by phone if you can do it with her/for her
in the meantime
I"M SURE that you could call Dr. Casey and ask him to prescribe
Lidocaine Patches for face
and/or
Lidocaine Mouthwash
Tell them she has NO doctor and is in AGONY
I'm sure dr. casey office can help ASAP
I had the same problems. I called my insurance company and told them to find me a doctor after searching and being denied by so many including drs in my network. The insurance company advised and gave me names of LP's. I got an appointment within a week with an LP. I had a video on my IPad of one of my many attacks. The LP, a lady, told me that she had a friend that was a neurologists and got me an appointment it took 3 weeks. I chose a lady because men seem to treat me differently. I'm a health nut. I rarely took any meds. Had not seen a doctor since 2002. I actually got to see Dr. Casey before I got an appointment with the neurologists. I was very satisfied with Dr. Casey's evaluation. He is direct. I'm not suing any Dr who messed me up, Dr. Casey asked me twice if I was suing the drs. When I told him no the second time he then told me what my injury was and what it was from. I had to find a neurologist or regular GP in my area that is willing to work with him under his direction because my case is very unusual. The neuro that I saw days after seeing Dr. Casey said he would work with Dr. Casey but I'm not sure that he has contacted him. The nuro didn't believe that I had seen Dr. Casey, he argued with me. The neuro wrote me a prescription - not facial patches that Dr. Casey told me about. The meds do NOTHING! Still in a lot of pain and having facial zaps, pulls, etc. Dr. Casey said it would take time to find the right meds because not everyone's body reacts the same to meds. and there are many different meds for this. It takes time. I understand her pain. Although I do not have small children, I can say that a support group is a must. Negativity is NOT WHAT SHE NEEDS! Any negative comments should not be said around her! Focus on the good. Be positive. I will say that when I took 1500mg of antibiotics a day my symptoms almost diminished. I wish I could stay on them forever but I know that is not an option. The pain is mentally, physically, and emotionally draining. It physically hurts me to talk which is very hard for people to understand. The weather is a HUGE factor in my pain as well as altitude. A regular GP is what Dr. Casey suggested. I haven't found one yet. It's ridiculous. If your daughter is not on this support group I suggest that she gets on here. Knowing that there are others is comforting as well as informative. I've had great advice from this site! Cleo is very knowledgeable. She needs to build a support group. I will be happy to be in that group. My FB name is Olivia Brooke Jones. Tell her to send me a request. I will be more than happy to listen, vent with, and give her info from my dealings with this. My trigeminal nerve damage was from a root canal. The endo said he went too far and then told me that the numb lip would clear up in a year. Every time I came off antibiotics I started having zaps, pulls etc. Was told it was infection and then put back on. I lost a total of 5 front teeth because of pain. Was told they were bad. Now the drs are saying I insisted them on pulling healthy teeth. I'm in constant pain, constant ear ringing, my left ear hearing comes and goes, I have facial twitches that scares people who see them, and five front teeth missing, an upper right lip that doesn't move when I talk, I have a lisp when I do talk, it hurts when I talk, and doctors who "don't want to get involved". Ugh.. The root canal was me trying to save a tooth that was injured from a grilled chicken wrap that had a foreign object in it. A chain restaurant, who admitted this had happened 3 times before me and once since me. "The company they get their chicken from quality isn't very good, I'm sorry." Direct quote from the manager. I've spent over 10,000 out of my pocket. They said they would pay per manager and owner. They have now turned it over to their insurance company and they are investigating it. Haven't seen any money yet and the bills keep coming in. Ugh!
Hello Southern Girl.....I am soo sorry I did not get back to you sooner. My daughter still is serious need of a family doctor. When you responded to my post, my daughter had an appointment with Dr. Casey the following week. I was hopefully this would begin to be the end of this horrid journey. Instead it has just gotten worse. Dr. Casey was fine and diagnosed her with Atypical TN (the rarest form and the one that reacts the least to medications and to surgery 40-60%). He said that he would not treat her until she found a family physician. I work up north for a social services agency and on 4/1/14, Michigan re-opened its Medicaid. Hundreds of thousands of people suddenly qualified for medical insurance and flooded an already doctor poor State. My daughter has 2 crisis problems: One she needs a family doctor. Every one she calls has a 6 week+ waiting list. She also needs to be referred to a pain clinic which will only take her with a referral from a family doctor ... so back to square one. She is in sooo much pain and I believe at her wit's end. She took pain killers after having and surviving cancer. She finally got an appointment with a doctor Monday and he literally threw her out of his office stating he would not treat anyone who had taken narcotic pain pills. The pills were prescribed to her for the pain she suffered with the robotic surgery she had. She told him she did not want him to prescribe pain pills and he would not listen. I was getting back to you to see if you had found a family physician and if so, if you would be willing to share his/her name. She did have a neurologist, but he also refused to see her last Spring. Any help would be much appreciated and I hope things have gotten better for you!!