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.

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.

Pertinent details:

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?
posted by mynameisluka to Health & Fitness (19 answers total) 4 users marked this as a favorite
I think that both of the surgical interventions sound like good choices. I don't know about the risks for your personal condition, but we do lots of (relatively) risky things like driving cars and not exercising enough, and the like, so if you think that these would result in real relief, then I would seriously consider them
posted by mercredi at 11:23 AM on June 22, 2014 [8 favorites]

I am not a doctor and suffer no comparable illnesses, but if you're canvassing for opinions I would absolutely go for the microvascular decompression. It's medical science's way of kicking trigeminal butt, and it sounds like your trigeminal nerve is in need of some serious kicking! Do it now, take care of it once and for all whatever it may take, and when you recover it sounds like you should be ready to face the rest of your life without this illness limiting your options.

Like mercredi says - there are so many things in life more dangerous than surgery that we do every day, the risk involved in getting ready for a life free from this particular pain sounds more than worth it.
posted by harujion at 11:30 AM on June 22, 2014 [9 favorites]

Is it crazy to even consider getting surgical interventions just so I can have a baby if I'm okay adopting?

I think it will be less confusing if you frame this as "surgical intervention to treat a disease known as the suicide disease in order to stabilize your life." And put the baby stuff on hold until this is figured out.

A lot of people see non-emergency surgery as somehow elective or avoidable or extreme or like "just pain" isn't a good enough reason. But sometimes it really is your best option. Get a second opinion if you're really not sure.
posted by bleep at 11:30 AM on June 22, 2014 [20 favorites]

Would you consider any of the invasive options if you didn't want a baby (or already had one)? It's not just doing it FOR this one big life event, after all, it's doing it for yourself, for the rest of your life, so that you don't have to suffer with chronic pain.
posted by elizardbits at 11:32 AM on June 22, 2014 [3 favorites]

My husband is suffering from the same thing for the last eleven years. As an experienced physical therapist, he is quite knowledgeable about neuropathic disorders, and has looked into all kinds of treatments. It's a nasty condition, and it worsens in winter.
He reluctantly did try the drug, but for a rather short time - it didn't work for him, and he did not want to up the dosage. He has tried acupuncture, with some success (placebo or real, it seemed to somewhat help for some time) and these days when he's at home, he gets some temporary relief by wearing a hair clamp on his ear, on the side where the pain is.
Anyway, he believes that microvascular decrompression is your best bet, if it has been diagnosed that it is your nerve root that is indeed being pressured (by an aneurysm or somesuch), and if you can afford the procedure.
Good luck and if you do go through with it, let us know how it went?
posted by helion at 11:43 AM on June 22, 2014 [2 favorites]

I'm not a doctor, but I researched this for an acquantance who has the same disease. I don't see listed as one of your surgery options the surgery where they put a tiny pieace of teflon between the vein and the nerve so they don't touch. Supposedly this surgery is very effective, BUT it's more effective the sooner it's tried. I"m not sure why your doctors haven't listed that as an option -- presumably because it's only available at some hospitals? -- but if you haven't already researched this option, you might at least look into it before making a final decision.
posted by If only I had a penguin... at 11:48 AM on June 22, 2014

Response by poster: That's the microvascular decompression procedure, penguin.
posted by mynameisluka at 11:49 AM on June 22, 2014

One fix up there is permanent, and doesn't mean you're on semi-ineffective and apparently dangerous drugs. I would personally be looking at that one alone to start with, and trying to balance the benefits against the downsides, which means you have a yes/no decision versus a 'which of these four things' one.

Assuming you're in the US I guess the factors are likely success, cost and potential risks (both for sticking with what you're doing and with decompression), and so you need to be asking the questions that fill in the blanks around that.

And I think you should be making this judgement regardless of any baby, to be honest; it adds to the downside of being on drugs but it seems that there are many other downsides to that, too, and unless the pros and cons are almost perfectly equal, that one extra consideration won't affect the result.
posted by How much is that froggie in the window at 11:49 AM on June 22, 2014 [5 favorites]

I would think that child bearing would be a consideration for radiation therapy. What are the potential complications of that therapy, is radiation sickness a possibility at all, and what are the effects on your hormones, eggs and other things? How does the amount of radiation compare to say an x-ray or CT?

The downside of sticking plates in your skull is you can never have an MRI again. What does that mean for looking into potential issues in the future? I bet lots of CT scans and contrast dyes.

Radiation exposure should be a consideration for any therapy as I assume they will be irradiating your head at regular intervals via CT for diagnostic and monitoring purposes. I would ask what effects, if any, this could have on your reproductive system. Remember hormones are controlled in the brain. Also ask about contrast dyes and their potential effects on liver, kidneys, etc.

I don't mean to go all tin foil hat on radiation but x-rays and such are procedures they tend to avoid on pregnant women for a reason.
posted by crazycanuck at 12:26 PM on June 22, 2014

My husband recently got what sounds like a similar, but I think a bit less invasive skull surgery. Here were some of the questions we asked specifically regarding the surgery itself:

* How many times have you performed this procedure? (We were shopping for the best doc at this point)
* What will the short-term recovery be like? How long will I be in the hospital? How long will I be out of work?
* What are the long-term risks and can you characterize the likelihood of those risks? Can something be done to mitigate or alleviate the most likely ones? We pushed hard at this question. If the doctor has performed a lot of this kind of surgery (and if at all possible, you really want to find a doctor who has...) they should have personal experience with the more common side effects. Stroke and death are scary-sounding side effects, but they are also usually very rare or the surgery would not be approved. The doctor should be able to provide specific numbers as to how often that has happened when they, specifically, were performing surgery.
* How long will the surgery itself likely take?
* Can you characterize the cure rate? (Push for a documented statistic here, not something vague like "very high")

You should also meet with a radiologist to discuss gamma knife radiation. The questions to ask would be pretty similar. My husband had a different kind of radiation with much worse short-term and long-term effects so our questions were more tailored to that, vs. to single-dose targeted radiation like gamma-knife.

One final note: Keep in mind that picking one option doesn't necessarily mean that you can't try something else down the line. This would also be something to discuss - is there some preferred sequencing (like do the surgery as early as possible for best effect, and if it fails try gamma knife; or maybe do one of the short-term options while you have your kid, then move back to medication). Maybe this isn't actually possible, but a doctor experienced with your condition should know.

OK, this is actually my final piece of advice: If at all possible, I would urge you to have your partner or another close friend or family member come to these information-gathering and treatment preparation appointments, especially if you are in pain and/or fatigued. It can help a lot to have someone who is both clear-headed and "on your side" when dealing with medical staff to ask questions and take notes. Usually my husband and I would sit down the night before an appointment and brainstorm a list of questions/concerns (like you're doing here). Then I could remind him if he forgot some symptom or question he wanted to discuss.

The downside of sticking plates in your skull is you can never have an MRI again.

Extremely unlikely. My husband now has titanium screws in his forehead and he's going to have more MRIs than he can possibly stand. Titanium is not magnetic, and in general implant designers are now conscious of MRI and other imaging limitations.
posted by muddgirl at 12:40 PM on June 22, 2014 [13 favorites]

Speaking as someone in constant pain, but not nearly as bad as you: go for the last one.

I think the gamma-knife treatment wearing off when your kid is 2-3 would really stink.
posted by flimflam at 12:46 PM on June 22, 2014

I had invasive abdominal surgery. The time in hospital sucked. The recovery sucked. The 6" scar across my ribs sucks. Would I do it again? In a heartbeat. Other members of my family have had surgery for various things, and again, they've said it was totally worth it.

Surgery is always a risk - people die every year from general anaesthesia alone. So you need to be prepared for that if you go that road. But it really does pale in comparison to the risks we take every day just living our lives.

That you're facing a lifetime of severe pain really sucks, and you have my sympathy. I don't envy you this decision in the slightest. Were I in your shoes though? I'd have surgery. You've your whole life to live, children notwithstanding. That you've pointed out twice that it's dubbed the suicide disease makes me think you're rather freaked out about it too, which is entirely understandable!

muddgirl is right that you want to dig into the details with competent doctors, and find a good surgeon you feel comfortable with. I'm in no way competent to advise which is the better surgical choice, either radiation or the decompression. From personal experience of invasive surgery though - the scariest bit is when you're going under. And then you wake up in a recovery bed, with various bandages, and the worst is already over. The option that gives the best odds of long term relief seems the better bet to me, but again, I'm no doctor.

I wish you luck. And if you possibly can, lean on your family and your partner for comfort and support - you deserve it. Don't be afraid to speak to a therapist if you're feeling emotionally overwhelmed. And seek advice from qualified specialists. Ask them 'if you were me, what option would you personally choose?'

But ultimately, the decision is yours, and you should pick the option you feel most comfortable with. It's your body, and your life, and only you can truly know your own heart.
posted by ArkhanJG at 1:30 PM on June 22, 2014 [3 favorites]

You've already gotten a great deal of good advice, so I'm just chiming in for the support and for something I noticed in your description of the microvascular decompression, that it's the most effective treatment aside from medication. Given that the medication, essentially poison at this point, isn't working for you, I think you have your treatment option. As for advice about interacting with your caregivers and asking questions, so much good advice above.

Surgery is scary. Brain surgery is super scary. But this is a common procedure that will literally change your life. If I were in your position, I'd go with the surgery.

(The descriptions of everything else all were so blatantly no for one reason or another. This is the only permanent solution. Stupid nerve. So sorry for you. Be well.)
posted by danabanana at 1:36 PM on June 22, 2014 [2 favorites]

My grandmother suffered from this condition for decades. She had some success minimizing the flare-ups via diet, but for the most part my grandfather played science experiment with her tegretol dosages and she lived in perpetual fear of a flare-up. She had some medical issues later which may or may not have been exacerbated by the years upon years of medication.

She was offered a surgery at one point that would have likely offered permanent (or nearly so) relief and she declined it because there was a chance half of her face could become paralyzed. Looking back on the situation with the perspective of hindsight, I am sad for her that she made this choice. When I think about how much pain she suffered---how even the fear of pain that often never even materialized led her to limit her life to the extent she did, and then led to side effects later as the medication built up in her body over decades---a minor and mostly cosmetic side effect of a surgery that could have ended the pain forever seems a small price to pay to me.
posted by JoannaC at 2:33 PM on June 22, 2014

I am someone with an (admittedly mild) case of TN who's managed it via megadoses of powdered magnesium. You might also look into mirror therapy.

Regarding surgical methods, maybe ask in more TN-specific communities as the success of surgery can be heavily dependent on the surgeon and individual patient. Chronic pain is a tricky thing that is not always tied to actual physical problems with our nervous system (i.e. damaged nerves, compressed nerves, etc), and thus surgical solutions are not always permanent.
posted by Anonymous at 2:47 PM on June 22, 2014

Adopting with a serious chronic illness that leaves you unable to parent during a flare-up is going to limit your adoption possibilities. Some agencies will screen you out and it may be difficult to get a doctor to sign off on your health if you have debilitating episodes of pain. If you know for sure you are going to adopt, talk to an adoption agency, the local state adoption or an adoption lawyer about the requirements now because that could be a significant factor to consider. You may need to consider the surgery in order to be a suitable candidate to adopt as well.
posted by viggorlijah at 8:09 PM on June 22, 2014 [3 favorites]

I'm 33 as well, though childfree. I'm allergic to tegretol (that was unfun!) and I've been on escalating doses of Topamax for 4 years, since my first attack (I lost 3 teeth before they realized it was TN).

The topamax has stopped working and I am slowly coming around to MVD, because, well, my pain doctor says that he sees a lot of TN patients in his office as a result of painful numbness after gamma knife surgery (the other kinds of radio surgery, which only last about 6 months, are less risky but each time has a greater risk of permanently spreading the nerve pain). There's also some good relief with spinal cord stimulation (which is not invasive, believe it or not!) and I may do that first, insurance company willing.

What's making me have the surgery: as my pain is less manageable with medication (for years topamax had it under control), it is now spreading. My neurologist and pain doctor say that TN has the tendency to spread to other nerve branches if left untreated. As far as I know, MVD totally cures TN instantly - I don't know the success of spinal cord stimulation or the various nerve blunting procedures. I have gotten nerve blocks and large amounts (300-400 units) of botox in my face, which helped some. See the biggest expert you can - I saw the people at the Mayo Clinic.
posted by sweltering at 8:30 PM on June 22, 2014 [1 favorite]

My mother in law has trigeminal neuralgia, which was treated by two gamma knife procedures. The first procedure was not successful, it was repeated and now she has been symptom free for years.

I'm a couple years older than you but in your position, I think that I would go with what has the best outcome over the longest period, even if it does involve surgery.
posted by crankylex at 7:27 AM on June 23, 2014

Surgery seems totally justified and sensible in this scenario.
posted by WeekendJen at 12:29 PM on June 23, 2014 [1 favorite]

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