Cindy Lou offers good advice. A note taker and frequent family observer can save you untold grief by helping to recall both the doctor's comments and your own experience in the few minutes you have to interview. Likewise, the following questions for your interview are extracted from one of the Face Pain Info files that I wrote a few years ago for the site.
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There is an overriding motivation for pain patients to embrace an "activist" attitude with respect to doctors and medical treatment. People who become members of their own medical management teams actually do better and get better medical outcomes than those who are more passive or traditional in the doctor-patient relationship. Active, articulate patients get better care -- it's just that simple. If you feel physically or emotionally unable to sustain such an interactive relationship, then I'd strongly advise you to take a member of your family or a trusted friend with you to your medical appointments, to advocate for your interests and take accurate notes on what the doctor says and does.
Although your relationship with a doctor begins with recommendations you receive on his or her competence, it thereafter rapidly evolves after you first meet the doctor in his or her office. In such a first meeting, it is wise to regard the process as an interview, with the doctor as a job applicant. You're hiring professional help to sort out a nasty, terrifying, and complicated set of problems. You wouldn't hire a kindergarten teacher to instruct a University class in graduate physics, would you? So why would you hire an out-of-date or inappropriately trained general practitioner to deliver sophisticated diagnostic advice and a treatment plan? There are lots of things you need to know. Among those things are the following:
- Who trained you and how long ago? Have you had (or have you taught) recent training in a hospital setting? Continuing education? May I read your Curriculum Vitae? In what local hospitals are you accredited?
- How many facial pain patients do you see in an average month? Of these, how many are Trigeminal Neuralgia patients?
- For someone with my reported medical issues, what steps will you take to confirm a diagnosis and evaluate me as an individual? How can I help you?
- Do you encourage patients to keep and share with you a pain journal? Will you use patterns of pain reported in journals as an input to my pain management plan?
- If I am later having a pain crisis or severe breakthrough pain, will you be available for telephone consultation? Will I be able to talk to a triage nurse if you are engaged with other patients?
- [for neurosurgery] Which surgery (or surgeries) do you do most often for this kind of pain -- and how often do you do such procedures (a few times per year is not enough)?
- [for neurosurgery] Based on what you know about me, am I a good candidate for the treatments you most often provide? Explain why or why not. Do you have literature I can read?
- [for neurosurgery] Describe the procedure briefly. What equipment will you use? Who will assist you? How much will this surgery cost before and after insurance?
- [for neurosurgery] What is the likelihood this surgery will relieve my pain completely? Partially? For how long? How do you know? Can you refer me to on-line literature that confirms these statistics?
- [for neurosurgery] What are the possible side effects of surgery, and for someone like me how often do they occur?
- How will you follow the outcomes of my particular case over the next five years?
- I intend to be an active and participating member of my own medical treatment team. Are you comfortable with my participation? Are you willing to take time to explain to me your recommendations or to hear my concerns?
Not all physicians will answer these questions thoroughly or fully. Their time is limited, and some will not be inclined to accept cross-examination. The latter sort of doctor probably shouldn't be in practice, but that's a judgment you don't need to share with them. You need only to look for a better doctor if you feel you're not being heard or respected.
CindyLou said in part:
While Red says he reads a lot of medical literature, I've been around the block a few times and only speak from my own experiences. When you go to the neurologist, take a list of questions in a notebook. Write down his answers to your questions. Maybe even take someone with you -- sometimes other people hear things you may miss because you are overwhelmed, not to mention miserable.
Hi Jennifer,
I have ATN twice and both times it started in a tooth. I once sat in a dental office, balling and begging them to pull the tooth. The second time it came back I actually had a root canal on it for absolutely no reason. It didn't work obviously because it is not the tooth it is the nerves.
Many people have nerve damage happen from dental procedures and there is a whole school of thought that even minor dental work can trigger TN--like it is there just waiting. I was 29 the first time I got it.
I have had multiple imaging tests and they always come back normal. That doesn't necessarily mean there isn't a compression...sometimes they aren't seen until they go in for surgery but that, to me, is a very, very big risk. MVD and other invasive procedures do have a much lower success rate for Type 2 pain and they have left some sufferers in worse pain.
Sometimes a tricyclic anti-depressant and an anti-convulsant are needed together. Has that been tried? I am lucky that medication has provided some relief for me over the years. Both Amitripyline and Nortriptyline have been my life savers.
I understand what you are going through and how desperate you are for relief. I spent 6 months the first time and 4 months the second time in 24-7 dire agony with NO help at all.
Please do not have any dental procedures done to try to fix this. It is the nerve. If it is due to trauma there is a chance that it can heal. I have read that within two years there is a possibility that it can heal.
You are in the right place here. There are a lot of people with a lot of experience. Keep asking questions and keep searching for answers.
I don't know where you are located but if I were at a place where I ran out of options I would go to see Dr. Linskey in California. He is the best and is helping a lot of people.
Jane
Some people on here do find some relief with Klonopin. And NO you are not crazy. I had one single tooth that throbbed for a year!!!! I wanted to rip my face off. Burning is definitely a word that falls under Type 2 or Atypical TN. Burning, throbbing, pulling, twisting, pulsing, deep relentless pain. These are all words that come to mind. Mine was in that one tooth every day and then that pain would spread to neighbouring teeth, top and bottom, and eventually up into my jaw, cheek and ear.
And of course you are depressed! That pain drives a person to insanity!!!! Every single forsaken day. You are young too. And you are probably not functioning and so tense and full of anxiety. I have been there. It is why I am on these forums to help other people. There is nothing more isolating. And seeing all the different Drs and specialists and no one can help and they look at you like you are nuts. Well, you are not. You have what many of us here have.
Jennifer Muir said:
The kolonopin keeps the burning at bay. All of my bottom teeth don't hurt anymore for 95% of the time since its started its specifically the bottom pointy tooth to the left only. Do my symptoms sounds utterly crazy to you or have you heard of others with just one tooth causing pain? Do a lot of tn people have burning or is that extremely rare? She said nerve damage causes burning ....I'm just so confused by all of this. I've now been taking lexapro an antidepressant for the past three or so months BC I'm depressed. Who wouldn't be? So I don't know if I can try another or tri cyclics BC you can't mix two antidepressants ....its a win lose situation...can a neurologist do injections or would that have to be performed by a neurosurgeon? Thank you so much for all your help
Jennifer,
You do not need to experience neck pain for it to be a cause of your trigeminal neuralgia. You should investigate it at least before you subject yourself to a lifetime of meds or destructive procedures. If you have no neck pain I realise it might be difficult to understand the connection. From your gofund I believe you might have enough to at least explore the idea. Substantial evidence is debatable, although in my mind conclusive (and others), until the bodies concerned with head/face pain put it up as a differential, which according to the evidence can not be ignored, there is going to be little research. Tn sites, will be mentioning the neck as a cause and will happen I reckon in the next couple of months, following tnlivingwithtn.org as a mention. Don't narrow your options and like previously mentioned, skim read, if nothing more,
http://www.livingwithtn.org/page/cervogenic-model
On the subject of having someone with you at appointments I think essential, especially if you are understandably stressed and anxious, you can often only hear what you want to, or fits the solution you had in mind on entering the consult, another mind can add balance.
Regards
So how would I go about figuring out if its the neck?
That is the hard part, but then as the cause of TN is speculated, the surgeon performing a MVD doesn't bet his house it will help. Please read what was mentioned then you can decide whether it is worth pursuing, after all it is always your call. Possible pointers, though not conclusive, is the one already mentioned, in addition to your own possible aggravating/ relieving factors such as does posture alter your pain, positions of sleep, turning your neck left to right/ up or down/ side to side? a daily pattern of pain, does pressing on the muscles around the neck and base of your skull alter pain? Possibly not applicable in your case but previous neck problems or trauma? Dental procedures ( especially if they were non invasive) Other/ previous head or face pain complaints/pain? Family/ work stress? How did it start? The list goes on, and all of the above as said is not conclusive but possibly indicative, solely or collectively.
I really don't feel the individual should be deciding, but a medical professional, who at least considers the neck as a cause.