How to find physician experts and patient support for troubling neurological conditions.
Question: I previously had surgery for a cranial cerebral spinal fluid leak (CSF leak). I've since had two lumbar punctures (spinal taps) to measure brain pressure. I really don't have problems with tests, but I don't like having these punctures. My doctor has said that this is the best way, and I do trust him, but do you know of any other ways to measure brain pressure that aren't so invasive?
Leslie: As you know, I'm not a physician and so I’m not going to diagnose or prescribe. But what I can tell you is that if you go into the research literature on PubMed, or even just type some search phrases into Google, such as “minimally invasive or non-invasive ways to measure intracranial pressure,” or “non-invasive assessment of intracranial pressure” you're going to find that there are other ways to do it. Whether those ways are best for your specific presentation are going to be for you and your doctor to determine.
But if your neurosurgeon isn’t willing to consider other methods, and you feel like she or he is generally dismissive of your opinion on this, you might want to think about going to another neurosurgeon in a major academic medical center, someone who has expertise in measuring brain pressure. Just go for a consultation and ask what they think. Spinal punctures are painful. They're risky. So your intuition is exactly right. And if there are technologies that will allow you to get the same or almost as good a measurement, you want to at least know what those options are.
Another resource that may of help to you is the Spinal CSF Leak Foundation. If you haven't already discovered this wonderful organization, it provides the latest news on your condition as well as ways to connect with other patients. Cedars-Sinai Hospital in Los Angeles has a CSF Leak Program and its website is also full of helpful information and guidance for patients at all stages of diagnosis and treatment.
Question: In 2009, I suffered a massive stroke that completely changed my life. To most people, I look fine, but I can't do what I used to do mentally. My most recent challenge is that I was diagnosed with obstructive sleep apnea and I’m having trouble sleeping with the mask on. It’s really hard to get someone to help me because everyone in health care is always so busy. I used to be a very smart and proactive person regarding my healthcare. Everything has changed after the stroke. Where should I turn?
Leslie: I’m so sorry, and I know that those can be two very burdensome diagnoses. You're certainly engaged in a tough battle, but it sounds like you have the courage to do it. My suggestion is actually simple and straightforward: This is the kind of situation where you should be receiving treatment at a major academic medical center, if you're not already.
That means researching the websites of the most respected institutions in the biggest cities near you, and finding one with a neurology department that has a program devoted to stroke. Make an appointment, and ask them to bring in their sleep apnea experts for your consultation, so that you get an integrated set of recommendations from two or more physicians practicing medicine in the same institution. Ask them to collaborate with you.
And as they make their recommendations, if you're up to it, you can vet them yourself by gathering additional information online. For example, you can check out the resources at the National Stroke Association. There's also the American Sleep Apnea Association, which has up-to-date information and resources for local support groups that may be able to give you some solid advice and guidance.
I know you feel like no one wants to help you, but believe me, the specialists who dedicate their lives to your exact conditions want to help. And you can find them at the major medical centers. For conditions like yours, which can be really life-constraining in so many different ways, it's worth making the drive if you have to, because it can potentially make an enormous difference in your life. If you don't have the energy—and, my gosh, I get that, I know how debilitating this can be—you've got a loved one, a friend, a neighbor, someone who really cares about you. Find the courage to ask them to help you.
One of my favorite phrases is: "A sorrow shared is a sorrow halved." A lot of times it can be really tough to even talk to a relative or a friend and confess just how compromised your functional status is because of the stroke, how fatigued you are because of the sleep apnea. But when you find the right person and you share what's really going on, I guarantee you that you're going to feel a whole lot better, and your relationship with that person will be strengthened.
The National Stroke Association also has volunteers who are standing by at an 800-toll-free number, waiting to help patients with the challenges of life after a stroke. And they have support groups in your area, which is another way for you to find guidance, strength and energy. People who've been through these kinds of tough diagnoses really do want to help other people in their journey, and they're waiting for you to call.