Which treatment option should I choose?
June 22, 2014 11:05 AM Subscribe
I have trigeminal neuralgia, aka "the suicide disease." Good times! I've been given four treatment options: lifelong heavy-duty medication, having a needle stuck into my face with a few months' relief, CyberKnife radiology, or microvascular decompression surgery. Which should I choose? How do I even approach this decision? Difficulty level: I want to get pregnant, but I don't know when.
posted by mynameisluka to Health & Fitness (19 answers total) 3 users marked this as a favorite
I'm in the middle of a flare, so I'm not thinking particularly cogently, and whenever I think about this, I get super upset and stressed.
I have trigeminal neuralgia, an oh-so-fun condition nicknamed "the suicide disease" for its stabbing, unpredictable, debilitating pain. It was managed through medicine until I tried to go off the medication, which prompted a flair and even MORE medicine. I am currently taking 600 mg of Tegretol a day and the condition is not fully controlled. It interferes with eating, sleep, and quality of life.
I'm a 33-year-old woman. Me and my partner have been together for 10 years, and we've recently decided that we want to have a baby. For a number of financial reasons, now is a horrible time, but I'd like to have a baby by the time I'm 36 or so. I'm also very okay with the idea of adoption, but something about "letting" this condition dictate my family planning choices is very not okay with me. I'm not in a position to adopt at the moment due to my financial circumstances, and we haven't been able to decide when we want a baby.
My partner is supportive and helpful, but he kind of freaked when he got the information below.
When I had my consultation with the neurosurgeon, he gave me the following four options:
Medicine. The medication I'm on (Tegretol) is a very non-benign anti-convulsant. It's cheap, but it interacts with 235235235235 other drugs, has a tendency to lose its efficacy for TN patients over time, and is counterindicated for pregnant and breastfeeding women.
Percutaneous injection. In this procedure, which sounds straight out of the 1890s, a needle is inserted into the cheek and back into the area of the trigeminal nerve. Alcohol is injected to essentially further damage the nerve and keep it from firing all wonky. However, the procedure is not permanent and pain can recur in as little as a few weeks.
Cyberknife radiation. In this procedure, the trigeminal nerve is damaged by hundreds of very focused beams of radiation which keep the nerve from firing all wonky. The procedure is not permanent, but can give up to five years of relief, if it works and there are no complications like misfiring and stroke.
Microvascular decompression. This procedure does not destroy the nerve at all; rather, the blood vessel and the nerve are separated so that the nerve no longer misfires. Though this is the most effective treatment aside from medication, it's also the most invasive—they cut the skin 3-4 inches behind the ear, drill a hole in your skull, and patch the whole thing up with a titanium plate. However, the surgeon characterized the risks as on par with the radiation treatment.
How on earth do I make this decision? What should I consider as I think about this? Is it crazy to even consider getting surgical interventions just so I can have a baby if I'm okay adopting? What questions should I be asking?