So, I was diagnosed with TN on November 11th of this year. I got started on gabapentin and for the most part, baring the one day of high barometric pressure that was HORRIBLE, my pain has been very well controlled.
Given the above, should I see a neurologist at this point? I don't really want surgery right now and I'm not sure what else a neurologist could do for me. When did you see the neurologist and what did they do for you?
Most go as soon as diagnosis…for MRI… to rule out MS and tumor. That is important step…however…you will not get a picture of compression unless you do fiesta MRI
if you have MVD surgery within first three years, AND with BEST MVD…TN…surgeon, is highest, best, percentage of long term remission.
So I would find a TN neurologist, that hat TN patients, understands it… And get your MRI.
That way as disease progresses , you will already have found a good one… Sometimes best are further than normal for travel time…you want the best!
Also tou can get from your GP, prescription , lidocaine patches for face, when things get bad, and can stay on lower meds.
I've had an MRI with contrast already, though not a FIESTA. I'd have to go to Johns Hopkins for that and am not sure my insurance would cover it since I've already had an MRI even though the FIESTA would possibly show the cause. I never heard about the MVD within 3 years statistic. Hmmm.....interesting.
Hi Student--
When I was diagnosed I called the Johns Hopkins tn clinic and they said my GP could prescribe all I needed and order the MRI- -- no need to see a neurologist unless the meds didn't work and I needed to look at surgical options. They said at that point my gp could refer me directly to their tn clinic and set up the appointment fairly quickly. Neurologist pretty much a waste of time and $$ if you are doing ok on the meds!! To set up a routine neurology appt. is nearly a year wait with their guy--guess he is pretty well-known- she said people fly in from all over the world to see him! Hope this helps!
See, you guys scare me! I also haven't been to a neuro because there is no way in God's green earth that I could have an MRI! ( fiesta or otherwise) . They put me in the little donut CATscan thingy and I freaked out. I think I have issues. :)
CATWOMAN
. How about OPEN MRI? For those who can’t get in regular one…google it…it’s non closterphobic…LOL no spelling today!
I sent my TN questionnaire into Hopkins two weeks ago, but I haven't heard anything yet. I think I might get the same response tacocat got. My neurologist put me on tegretol, but hasn't sent me for any blood tests. I also haven't had an MRI. Finding a TN neurologist isn't that easy. All the neurologists I called work with spinal cord problems. When I go online and put in TN, my area, and neurologist, the only thing that comes up is Johns Hopkins.
I would see a neurologist as soon as I could. When I was first diagnosed, I dragged my heels because the symptoms weren't that bad, but then I had an ER visit and an appointment with the neurologist the next day. I was on Neurontin and just started tegretol.
lol!!!! they can give you a sedative!! I thought i would freak out but it really wasn't bad--I just didn't open my eyes the whole time and counted the seconds/minutes..... I heard the open ones don't really work for TN diagnosis..they are not strong enough... the mri is really only to rule our brain tumors and ms -- a lot of time nothing shows up at all even if you have tn...
catwoman said:
See, you guys scare me! I also haven't been to a neuro because there is no way in God's green earth that I could have an MRI! ( fiesta or otherwise) . They put me in the little donut CATscan thingy and I freaked out. I think I have issues. :)
my two cents....when i switched GP's i pretty much insisted on seeing a neurologist. However, once i got there, he pretty much rolled his eyes at me and said "So what is it you want me to do for you?" (as i said my meds controll my pain most of the time.) It was a waste of my time, and he was pretty obvious that he thought i was wasting his. Not to mention the copay...
I'm not sure when you SHOULD see one...but i can say the one i saw didn't seem to think i needed to be seen my him since my meds were adequate most of the time.
~Mistee
Thanks for the replies! I guess I’ll hold off on seeing one until I think I have a need for one.
I have hints of claustrophobia but TN forced me to bring out the hard core survival instinct that whipped it aside. When this survival instinct kicks in it is like my brain goes to a different place. I was so desperate not being able to talk, eat or brush my teeth that when I was finally having my MRI I felt like I was in a giant mechanical whirring mothering machine. I really felt cared for, like the machine and all the human ingenuity that led up to this was trying to help me. Believe it or not it was a strange 45 minutes of gratitude. If you have claustrophobia using some mild sedatives would help. I would try out the sedatives before hand so that you understand the effect. I would not try not to build up a lot of drama about it for yourself or others. My sister who I love dearly the night before my MRI started going into the whole claustrophobia thing and I felt a little hurt. We need to be brave for each other. Whether it is medication, surgery, or MRI or trying some natural approach. Man this TN thing is a bear! It will take many of us all our courage and ingenuity.
One thought that I need to follow through with... is that when we are feeling good... really prepping ourselves with the help we may need further down the road. I think it was Mimi who was mentioning this that during her years of remission she learned mediation and actually became a Buddhist to prepare herself for when times get rough. It is easy when we are feeling well not to even want to think about the hard times. But feeling well is a very valuable time to get resources in place. So this is a reminder to me of some things I need to do! Thanks everyone.. sending peace and well-being. Tina
Thanks for the claustrophobia tips but we in Australia are completely behind when it comes to technology and I had never even heard of open MRIs!! I fear I would need something more than a mild sedative. Horse tranquilizer perhaps???
Hi studentNpain..I assume your meds were prescribed by a Primary Care Doctor. How did they arrive at the diagnosis?..I would see a Neurologist soon. It is a good idea to establish a relationship even if it means infrequent visits. Since my initial visit to Neuro, an MRI and effective pain control 4 years ago, I haven't needed to see the Neurologist. However, I have a medical record which provides helpful info (included with the PrimCare referral) for any subsequent visit.
Yup, my PCP is awesome. Pain started on a Monday, I saw her that Thursday and was put on antibiotics for a sinus infection, which I did have by the way. Over the weekend the pain was not improving, went back Monday and had x-rays which were normal and was put on gabapentin that day. Next day had an MRI with contrast which was also normal.
I feel very lucky that she believed the type and severity of pain I was having and I was treated so quickly. I was also ready to go to the dentist!
I don't even know what I would say to a neurologist. Other than barometric pressure changes, the pain is basically controlled 100%.
Tina,
Regarding claustrophobia, you are so right. When you experience extreme pain, you can snap out of the things that once seemed so impossible to overcome.
Also, being proactive in teaching ourselves how to handle pain in advance is an excellent idea. During my attack I tried googling “how to use your mind to control pain” I was hurting too much to get very far, and then I think someone here listed some great resources. I need to work on that. Since I am so newly dx’ed, I am concerned about traveling and how to handle an attack as intense as the last. I think we all need a good plan of action. The brain is so powerful. We need to tap into every non-invasive technique to bring us relief. br/>
msbluebells said:
I have hints of claustrophobia but TN forced me to bring out the hard core survival instinct that whipped it aside. When this survival instinct kicks in it is like my brain goes to a different place. I was so desperate not being able to talk, eat or brush my teeth that when I was finally having my MRI I felt like I was in a giant mechanical whirring mothering machine. I really felt cared for, like the machine and all the human ingenuity that led up to this was trying to help me. Believe it or not it was a strange 45 minutes of gratitude. If you have claustrophobia using some mild sedatives would help. I would try out the sedatives before hand so that you understand the effect. I would not try not to build up a lot of drama about it for yourself or others. My sister who I love dearly the night before my MRI started going into the whole claustrophobia thing and I felt a little hurt. We need to be brave for each other. Whether it is medication, surgery, or MRI or trying some natural approach. Man this TN thing is a bear! It will take many of us all our courage and ingenuity.
One thought that I need to follow through with... is that when we are feeling good... really prepping ourselves with the help we may need further down the road. I think it was Mimi who was mentioning this that during her years of remission she learned mediation and actually became a Buddhist to prepare herself for when times get rough. It is easy when we are feeling well not to even want to think about the hard times. But feeling well is a very valuable time to get resources in place. So this is a reminder to me of some things I need to do! Thanks everyone.. sending peace and well-being. Tina
You should definitely consult with a neurologist, as he/she could be a great help with a medicinal approach to combating the pain and further help make sure the drugs you are prescribed are doing no harm to the body. This should be monitored regularly with periodic blood work. The neurologist would regularly monitor the effects of prescribed drugs on your cognitive and reflex skills as well as assess what you relate as side effects. Their approach should not be to jump into surgery as the first-line solution. One other suggestion would be to make sure the neurologist chosen has some direct demonstrable experience with TN!
I've had bad experience attempting to self-medicate and don't recommend it if there are other resources.
Hope this helps. Best luck and warm blessings. -- Priscilla
You should definitely consult with a neurologist, as he/she could be a great help with a medicinal approach to combating the pain and further help make sure the drugs you prescribed are doing no harm to the body. This should be monitored regularly with periodic blood work. The neurologist would regularly monitor the effects of prescribed drugs on your cognitive and reflex skills as well as assess what you relate as side effects. Their approach should not be to jump into surgery as the first-line solution. One other suggestion would be to make sure the neurologist chosen has some direct demonstrable experience with TN!
I've had bad experience attempting to self-medicate and don't recommend it if there are other resources.
Hope this helps. Best luck and warm blessings. -- Priscilla
TACO - You may be lucky with your GP. Mine utterly failed to diagnose the TN but did order MRI (no results); sent me to an expensive Facial Pain specialist who also failed to diagnose. I made acquaintance luckily with a neurosurgeon who diagnosed TN on a pin-point and mentioned the likely drugs to treat it, warning they would only be effective for a certain time period.
Next I visited a local neurologist (but he had no real direct experience with TN) and he monitored treatment with Tegritol which worked for a couple years then stopped working. Next was Cymbalta + Tegretol. Same thing: worked for a couple years. As I mentioned in another post, it's really important to monitor the effects of these drugs. Depending on your constitution and the dosage Tegretol can seriously affect the liver. Other drugs adversely affect the body's sodium balance.
Have a care, be well and PAIN FREE! -- Priscilla
When I went to the neurologist, he confirmed the diagnosis of TN and also checked for signs of Multiple Sclerosis. He also sent me for an MRI to see if there were any visible problems in my brain.
I'm hearing a lot about the neurologist doing an MRI, diagnosing, and taking care of meds. I've already had an MRI and been diagnosed. The medication I am on does not require lab testing not does it interfere with many systems in the body as it is excreted basically unchanged in the urine, I'm on gabapentin.
I'm just not sure a neurologist can do much for me at this point and don't have a lot of extra money to spend, especially if I'm not going to get something out of it.