By Kenneth F. Casey, MD
So, your face hurts. And it has happened a couple of times. You consult Dr. Google and their colleagues to see what is going on, but you are not sure. You go to see your family doctor. After careful history taking and a brief exam, your family doctor sends you to see an ear, nose, and throat (ENT) doctor, or maybe a dental professional. Each one of these professionals gives you a partial diagnosis and some treatments to follow, but the pain is still there. You return to your family doctor, and because there were no structural problems seen in the sinuses or in the jaw or teeth, they decide to send you to a neurology pain specialist, who gives you another diagnosis. Sometimes it is a variation on the different face pain diagnoses. Medicines are prescribed. Sometimes even injections. But the pain persists. Now you are sent to a surgical pain specialist with a scalpel – the neurosurgeon. Scary, right? And now, another diagnosis and sometimes a recommendation for surgery – but what surgery? Dr. Google and their colleagues do not seem to agree with your specialist. What to do now?
Patients often ask me about second opinions. When you go from your family doctor to a different specialist, and finally to a neurosurgeon, those are all second opinions. Unfortunately, people think of a second opinion as questioning the first doctor or specialist. Often in neurological issues, the diagnosis is not clear, or it is not fully recognized. It can take time for all the symptoms to evolve to produce a clear answer. So, you have already had several “second opinions.” Patients and families often would ask me at meetings – should they get a second opinion? Most well-trained neurosurgeons welcome the question, and the answer is YES. Why?
An accurate diagnosis is the cornerstone of any treatment plan. A patient who receives treatment for an illness they do not have will not likely get better; in fact, they might get worse, either as a result of their disease or from side effects of their medical treatment. That is why confirmation of a diagnosis is crucial.
Yet, such confirmation is not commonplace. About 1 in 20 American adult patients seeking outpatient care are misdiagnosed, according to a 2014 study published in BMJ Quality and Safety. 70-80% of Americans “feel confident in the accuracy of their doctor’s advice, and do not feel the need to check for a second opinion or do additional research” (2010, 2015).
One reason for poor treatment response is an incorrect diagnosis. Neuropathic facial pain is not “one size fits all.” Getting a correct diagnosis can save you from unnecessary treatments that do not help your pain. One step is to use the self-diagnostic site “TGN: A Public Platform” to solidify your story. The incidence of trigeminal neuralgia, or how many people are newly diagnosed each year, is thought to be 4.3 people per 100,000. Other neuropathic facial pain conditions are also rare. Some people have more than one type of pain, either concurrently (at the same time) or subsequently (one follows the other).
One reason for a poor treatment response is that the causative diagnosis was incorrect. ENT surgeons may diagnose a sinus condition when it is not present. Dentists may consider trigeminal neuropathic pain to be treatable by invasive dental surgery when it should not be. Differentiating between the various types of facial pains and mechanisms associated with neuropathies can sometimes be confusing, especially if the symptoms are complex and do not fall into any one specific category. Over the years, the terms used for trigeminal neuralgia have changed, and one doctor will apply these terms differently than another. The cause of classical TN is typically nerve compression by a vessel, usually the superior cerebellar artery, on the trigeminal nerve root as it leaves the brain stem. However, in some cases, compressions may not be found. Your description of your pain may not match your diagnosis. You may have an underlying disease causing your pain. A large portion of patients have continuous pain between attacks. Most facial pain is not neuropathic, so a systematic approach to its diagnosis is essential. Non-neuropathic conditions that should be considered in the differential diagnosis include myofascial pain, temporomandibular joint disorder (TMD), dental disease (cavities or gum disease), cracked teeth (with exposed nerve roots), infections including sinusitis, and migraine headache.
Surgical second opinions are consultations sought by patients when they want another expert’s evaluation of their medical condition and treatment plan before undergoing surgery. These opinions can provide patients with valuable insights, reassurance, and potential alternative options. Since your primary doctor has already used this path, there should be no hesitation for you to continue to follow it.
Here are some key points to consider regarding surgical second opinions:
1. Expertise and perspective: Obtaining a second opinion allows you to benefit from the expertise and experience of another qualified surgeon. Different surgeons may have varying approaches, techniques, and opinions on the best course of treatment, providing you with a broader perspective.
2. Confirmation of diagnosis: A second opinion can help confirm the accuracy of your initial diagnosis. Misdiagnoses can occur, and it’s important to ensure that your condition has been correctly identified before proceeding with surgery.
3. Treatment alternatives: A second opinion may present alternative treatment options that you were not previously aware of. These can include less invasive procedures, different surgical techniques, or even non-surgical alternatives. Exploring all available options can help you make a more informed decision about your treatment.
4. Reassurance and peace of mind: Surgery is a significant decision, and seeking a second opinion can provide reassurance that you are making the right choice. It can help alleviate doubts, provide additional information, and increase your confidence in the recommended treatment plan.
5. Complex or high-risk cases: Second opinions are particularly beneficial in complex or highrisk surgical cases. These cases often require specialized expertise or a multidisciplinary approach. Consulting multiple experts can help you understand the risks involved, potential outcomes, and whether there are any additional precautions or considerations to be taken.
6. Communication and collaboration: Second opinions can promote communication and collaboration between healthcare providers. With your consent, the second opinion surgeon can review your medical records and consult with your primary surgeon, leading to a more comprehensive and coordinated approach to your care.
To seek a surgical second opinion, you can start by discussing it with your primary healthcare provider or surgeon. They can provide referrals to other specialists or institutions known for their expertise in the specific area of surgery you require. Additionally, some insurance plans may cover the cost of a second opinion, but it is essential to check with your provider beforehand.
Remember, obtaining a second opinion does not necessarily mean you have to switch surgeons. It is meant to enhance your understanding and confidence in your treatment plan, ultimately empowering you to make the most informed decision about your healthcare.
Now you have different options, from different doctors, some in the same specialty – what do you do?
That is not an easy answer. In the arena of facial pain, you can rely on the reputation of the specialists. You can also rely on the word of mouth from other patients. That is the benefit of support groups.
But in the end, it comes down to what you feel and think about that last specialist. Your sense of trust and the way that specialist treated your story is ultimately how we all decide to move ahead with care. It is not a perfect system, but it is the best we have right now. Always questioning and seeking more information from specialists is absolutely the right path.