The Importance of a Spinal Tap in HD Research

I traveled last month to the University of Wisconsin-Madison to participate in an observational research study called PREVENT-HD. I’ve written about the importance of participating in trials, and the purpose of the PREVENT-HD study is to develop tools to find and track subtle, but measurable, changes in behavioral, cognitive, and emotional responses that occur before the more visible symptoms of Huntington’s disease (HD) appear and the disease begins to affect a person’s daily life.

I arrived at the study visit and had a full day of tests and procedures, including a motor exam to measure body movements, and to check how I’d do with an MRI and a spinal tap, which is also known as a lumbar puncture (LP).

I documented my study visit on Twitter to help others understand what I was about to do, and I enjoyed seeing the positive comments from those people who had already participated and from those who are interested in getting involved. The top questions I read were, “Who do I contact to see if I qualify?” and about the spinal tap: Did it hurt? What was the pressure like? How long did it take? What was the recovery like?

I’m not a medical expert or a doctor, but I want to share a bit more about the LP. Please note that the experience was my experience alone, and anybody considering participating should consult with a medical professional first.

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According to Mayo Clinic, a spinal tap is performed in your lower back, in the lumbar region. During a lumbar puncture, a needle is inserted between two lumbar vertebrae to remove a sample of cerebrospinal fluid. This is the fluid that surrounds the brain and spinal cord to protect them from injury.

Spinal taps are important to the HD community for two reasons. The observational research study PREVENT, along with studies like CLARITY or SHEILD-HD, analyze the fluid pulled from the LP to track any biomarkers that may help to better understand HD progression. Participants in recent clinical trials also underwent spinal taps before they received medication.

My PREVENT lumbar puncture was scheduled for 7 a.m. on a Tuesday morning. The day before, I had to provide a blood sample to ensure that my body was healthy enough to undergo the procedure. I wasn’t allowed to eat or drink colored liquids after 10 p.m. Monday, until after the spinal tap.

I woke up at 6:30 a.m., and walked to the University of Wisconsin’s clinic. I was set up in a standard hospital room that was very comfortable. The nurse came in and confirmed all the basics and then tested my vitals. Everything was good to go and the nurse practitioner who was the on-site LP specialist answered all my questions and did a great job alleviating my concerns.

Once things got underway, I was asked to lie on my side and scrunch into a ball as much as I could. The location where the puncture would occur was circled and sanitized. For about 25 minutes, I laid in a ball while the staff asked me questions to keep me alert and distracted. There were two times when I felt discomfort. When the needle was inserted into my back it felt similar to when blood is being drawn. After the needle was inserted, I felt some slight pressure on my back, but no major discomfort. Once the needle was in, I had to lie in the same position on my side for about 20 minutes. I’m not sure if this time varies from person to person. I also felt mild discomfort when the needle was taken out, but it wasn’t painful.

Right after that, I was asked to flip on to my back and a timer was set for one hour. They brought me food and I was encouraged to eat and drink. While I was reclining, I was able to be on my computer, to make some phone calls, to do anything that I wanted to, really. I didn’t feel any negative symptoms, so after the hour was up, I was free to go. Before I left, I was advised to take it easy the rest of the day, to not do any strenuous exercise, and to drink lots of water. I got into my car and headed home.

I received a call the next day from the PREVENT team who wanted to make sure that I was feeling OK and not experiencing any side effects. I wasn’t, so it was a short two-minute call.

Lumbar punctures aren’t for everyone, but they are very important for HD research, and I hope I’ve been able to shed some light on the procedure. Anyone interested in participating in a clinical or observational trial should speak with their nearest Huntington’s Study Group clinical trial site or HDSA Center of Excellence to see if they qualify.

If any readers need assistance navigating the trial options, I encourage them to reach out to me. I am happy to help. Please share in the comments below.

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.