My Boyfriend has an appointment with his neurologist on Wednesday. I know I need to ask about meds and how many patients he’s had with TN (I’m thinking not many…) and now that I’m more educated about TN, I am going to ask to see the MRI again.
Are there any other questions you would suggest we ask?
Hi Jackie,
My neuro also does not have many patients. I believe he said he had 8 or 10 but only about 5 active. That means either the patients found another neuro or they are doing well. I’m not sure what to tell you about medications. I see you are online. Maybe we can talk. I take 3600 mg of neurontin, tylenol 3 and 150 mg of trileptal. I am doing well with little pain that is mostly controlled. I had MVD surgery in Apr 09. I have had TN for about 5 years.
Liz K.
Thanks Ro~
They have actually been really good about communicating with me. He has me listed on all of his paperwork as next of kin… they don’t even hesitate… or haven’t yet, anyway. 
I am optomistic about his appointment tomorrow… if just to have a better understanding where things stand… and hopefully a change in meds to help alleviate some of his pain.
Ro ~ said:
Hi Jacki,
I’d like to think if the neurologist your boyfriend has, would refer him to another neurologist or surgeon if he/she didn’t feel qualified.
One thing my gp said to me was be careful of how we speak to specialists, the ego may get bruised.
if I may suggest, go to this link within the group and refer to the list of questions to ask or keep in mind. It depends on what stage your boyfriend is at with TN and what the tests show. By chance do you know the medical definitions and medications? the effects? Do you know the type he has? and so on.
Please don’t be offended but with you being a girlfriend and not family, they may not answer your questions. You may want to sit down with your boyfriend and make a list of questions for him to give to the Neurologist. One thing that you may want to go over is if he had any head injuries or tramas.
Sometimes tests are limited and there are many dif tests. Some tests don’t show the true or complete cause until they operate… on the flip side, some can go with medications and not need surgery.
Medications should come with an explaination of effects / side effects and what to expect.
At the end of each office visit, a patient should be
able to answer the following questions:
• Where do I go for tests, medicine, and
appointments?
• How should I take my medicine?
• When do I take it?
• What will it do?
• How do I know it is working?
• Whom do I call if I have questions?
Other instructions may include:
• What to do. How to do it. When to do it.
• When do I need to be seen again?
• Do I have another appointment? If so, what
is the date and time of the appointment?
• Are there phone numbers to call?
This sounds basic, but as a SG Leader you would be
surprised what people do and do not know. Help
your doctor help you.
Well the appointment went well. I was much more comfortable after talking to the neurologist again. He seemed impressed that I knew my stuff. Thanks everyone!
He is weaning David off of the Gabapentin and has increased his Tegretol (400 mg 3x a day). He also gave him samples of Cymbalta IF the pain is not controlled by just the Tegretol. I asked about Trileptal and he said that is definitely an option… but I believe Lyrica is the next step.
He’s seems to be having more pain, but I am assuming with the changes in medications it will take a few days for everything to readjust.
Jackie
So the increase in Tegretol has seemed to help a bit. He reduced his Gabapentin down to 2 a day on Sunday. He still had enough pain yesterday he felt he needed to start the Cymbalta (30 mg)… he’s been nauseated, had chills, and was awake from 1-4 this a.m. all which seem to be common side effects… I hope these decrease with time. Any suggestions how long we should wait to contact his Dr. about adding Lyrica if the pain continues?