Well I saw a new Neurologist this past week who after three Dr.s have all said they believe I am suffering with TN, I see this Neuroloist who first of all makes me feel like a total idiot and tells me I am not understanding what kind of pain I am experiencing. I work in the health care field and have researched all kinds of facial pain ailments. He tells me he is sure it is just a headache with the occassional sharp pains, and I probably have never experienced a true headache in my life. When I told him all of the research I have done on TN and the people I have talked to he tells me I COULDNT have TN because I am not over the age of 50. I explained that lots of people I have talked to are younger than 50 his response to me was “They have been misdiagnosed”. He changed my meds to a headache pill and said if it doesnt work to then stop it in a week and start on Carbamezapine because it works the best for TN. So lots of crossed signals going on. He has ordered a MRI to happen in the next 3 weeks and said… you know it wont show TN so dont get your hopes up… AS IF I really wanted it to be TN. I left the office mad, upset, and totally confused by the whole thing
Hi Shelly,
omg that is so sad that the doctor can say things like that before a test has been done i was also told i was to young and it was all in my head and i said i know what pain is it also made me mad and upset i didnt see a doctor or nuro for a long time i had lost faith and felt hurt,the last thing i would want to do is fake it hahaha it takes up to much time.At last i found a nice doctor that understands me and tests hav shown i have TN i think some doctors need help themself lol i hope u hang in there takecare.
Mina xx
Thanks Mina, I am very thankful that I have a wonderful family Dr. that I trust totally. She couldnt believe it. I went off Gabapentin this past sat. and started a headache pill sunday and as of today off it because I have the worst headache ever and the TN is totally flared up. So tonight I have started Carbamazepine as my family Dr. is convinced it is TN as the pain was better on Gabapentin and worse since been off it. Just hoping the new pills start working quick and the headache goes away. Still waiting for my MRI and CT Scan.
Oh my gosh… how frustrating. I’m so sorry you have had to deal with an insensitive dr. on top of the TN. If you don’t feel comfortable with this neurosurgeon, you need to find a new one. It is your body and your brain. You need compassion and respect when you are going through this. There is absolutely nothing wrong with changing dr’s. I’m on my second diagnosis of TN, in 2 years. I had MVD on the left side and now have TN on the right side. Please speak with your family dr., whom you seem to trust, and make sure they know about your problem with the surgeon. It is very important to be confident in your surgeon and have some mutual respect for each other. This person may be opening up your skull and working on your brain stem, so there is nothing that says you have to stay with one surgeon. There are many out there and you don’t have to just settle for the first one you see. Best of luck to you. Let me know how your doing. And, by the way, I’m not 50 either.
Cyndi
Shelley Jay said:
Thanks Mina, I am very thankful that I have a wonderful family Dr. that I trust totally. She couldnt believe it. I went off Gabapentin this past sat. and started a headache pill sunday and as of today off it because I have the worst headache ever and the TN is totally flared up. So tonight I have started Carbamazepine as my family Dr. is convinced it is TN as the pain was better on Gabapentin and worse since been off it. Just hoping the new pills start working quick and the headache goes away. Still waiting for my MRI and CT Scan.
I had a neurologist who sounds just like this flake. Just because they’re “specialists” doesn’t mean they know all about every disorder. I was told also that I couldn’t have TN because I was too young. When I had a severe allergic reaction to Tegretol (blisters in my mouth and nose, swollen tongue and high fever) he told me to keep taking it. I did not follow his advice, which probably saved my life. I changed doctors. The next neurologist put me on Topamax, and increased the dosage every week until I was at the maximum level allowed. This affected my memory so adversely that I couldn’t remember how to drive a car, couldn’t read and had bizarre hallucinations. I did lose a lot of weight, but I don’t remember anything from that time period. Oh, and I was still in pain. After 6 years of misery, I finally begged my GP to get me an appointment with the neurosurgery department in San Diego. I have an HMO, so everything has to go through the proper channels. I had to wait 3 months to see the doctors I wanted for this surgery, but it was worth it. They wondered why it took so long for me to be referred for surgery. HA. I wouldn’t have been referred unless I begged! I now have an appointment for MVD surgery to take place on June 16th, my son’s 18th birthday. I hope he doesn’t mind too much. I figure we can have something more to celebrate on that date if all goes well! Oh, my MRI never showed anything out of the ordinary, but these surgeons (who have done MANY MVD’s) said that is typical. They said my symptoms are classic TN, and feel confident that they can help me. Please find another doctor who understands this disease. I hate for anyone to go through unnecessary years of hell because of some pompous jerk who doesn’t believe you know your own body! YOU are your own specialist when it comes to pain. Trust your intuition and intelligence and know that there are good docs out there! Good luck and stay strong.
Thank you Cynthia and Suzanne, I have talked to my family DR. and once I have my MRI I will not have to see this asshole every again. She will refer me to someone else. I am researching Neruo Dr.s on the island that I live hoping not to have to go to the mainland for treatment, but if that is what is meant to be then so be it. I am very thankful for this wonderful group… you never feel alone in the day to day struggles here. Thank you to everyone. Wishing for pain free days for all of us. Hugs
Suzanne Marriott said:
I had a neurologist who sounds just like this flake. Just because they’re “specialists” doesn’t mean they know all about every disorder. I was told also that I couldn’t have TN because I was too young. When I had a severe allergic reaction to Tegretol (blisters in my mouth and nose, swollen tongue and high fever) he told me to keep taking it. I did not follow his advice, which probably saved my life. I changed doctors. The next neurologist put me on Topamax, and increased the dosage every week until I was at the maximum level allowed. This affected my memory so adversely that I couldn’t remember how to drive a car, couldn’t read and had bizarre hallucinations. I did lose a lot of weight, but I don’t remember anything from that time period. Oh, and I was still in pain. After 6 years of misery, I finally begged my GP to get me an appointment with the neurosurgery department in San Diego. I have an HMO, so everything has to go through the proper channels. I had to wait 3 months to see the doctors I wanted for this surgery, but it was worth it. They wondered why it took so long for me to be referred for surgery. HA. I wouldn’t have been referred unless I begged! I now have an appointment for MVD surgery to take place on June 16th, my son’s 18th birthday. I hope he doesn’t mind too much. I figure we can have something more to celebrate on that date if all goes well! Oh, my MRI never showed anything out of the ordinary, but these surgeons (who have done MANY MVD’s) said that is typical. They said my symptoms are classic TN, and feel confident that they can help me. Please find another doctor who understands this disease. I hate for anyone to go through unnecessary years of hell because of some pompous jerk who doesn’t believe you know your own body! YOU are your own specialist when it comes to pain. Trust your intuition and intelligence and know that there are good docs out there! Good luck and stay strong.
Shelley,
It is too bad that the doctor doesn’t understand your pain. Pain is pain. Change doctors. If the seizure meds work, then it is TN. If you have a negative MRI, still see a neurosurgeon. Then you will know all of your options. At least he ordered the MRI. I myself have wondered if my pain is as bad as another person’s pain. When I first got TN, I hurt. But it got much worse through the progression of the course. I hope your TN does not. And if it doesn’t don’t let that stop you from seeing a neurosurgeon. I wished I had done that earlier. But I didn’t because the medicine worked.
Liz