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Spinal CSF Leak: The First Blood Patch

Spinal CSF Leak: The First Blood Patch

September 27, 2021 ribbonrx Comments 3 comments

It was a warm summer morning when I arrived at the pain management center. I was there to have an epidural blood patch for a suspected spinal CSF leak. If the blood patch worked, it would be more or less diagnostic of a spinal CSF leak. My MRI imaging was read as normal, so in the eyes of my doctors, I needed this patch to work to prove I had a leak.

CW: Blood, needles, detailed description of medical procedure

What is a Blood Patch?

Also known as an epidural blood patch, this procedure involves injecting a patient’s own blood into the epidural space in the spine. This space is located just outside the dura mater, which is a tough, fibrous membrane that keeps cerebrospinal fluid (CSF) contained. This fluid flows around the brain and spinal cord and cushions, or floats, the brain in the head. When there is a hole in the dura, CSF fluid leaks out, causing the brain to sag in the head, resulting in numerous symptoms and sometimes causing complete debilitation. Holes in the dura can be caused by lumbar punctures, accidental punctures during placement of an epidural needle, spinal surgery, or spontaneous leaks. (My leak is spontaneous.)

How Does a Blood Patch Work?

Post Patch Restrictions

When blood is injected into the epidural space, there is an immediate volume displacement¹ where the dura is squeezed by the presence of the blood. This pushes the CSF up into the brain and lifts the brain. Patients may experience an immediate relief of symptoms due to this effect. (This is by far not an occurrence in every case.)

As a secondary mechanism, the blood patch will (hopefully) seal the hole in the dura, somewhat like putting a bandage over a hole in a rubber hose. This effect is often delayed; however, variability is substantial.

Unfortunately, blood patches don’t always work. For spontaneous leaks, studies have shown² that a blood patch is 30% effective. Failure may be due to not enough blood being injected (studies have shown³ that high volume patches above 20 mL are most successful). The patch may be blind, or non-targeted, if the leak site is unknown; the blood may not reach the leak. There could be other factors as well, including not being careful enough to protect the patch once it’s placed. It’s important to pay attention to certain restrictions in movement following a blood patch.

Preparing for the Blood Patch

Preparing for my blood patch
In pre-op preparing for my first blood patch

I didn’t have to wait long in the procedure waiting room before a nurse called me back to the prepping area. Thank goodness; I was full of nerves and just wanted to get this show on the road!

My nurse had difficulty getting my IV in; I was so dehydrated from having to fast for the procedure that my veins weren’t cooperating. When the anesthesia fellow, Dr. P, came in, he took a stab at it. After using a heat pack to get my veins to dilate, he was able to get an IV in my right hand. The team wanted to have my entire left arm available for use due to the amount of blood needed for the procedure.

Once the IV was finally in, I signed consent and the attending anesthesiologist, Dr. S, came in. He explained the procedure in more detail. Both doctors were very nice, so I was comfortable with the thought of them doing my blood patch. Even though Dr. P was a fellow, this was a week before his graduation to attending physician, so I wasn’t worried!

The Blood Patch

I rolled into the procedure room a few minutes later. I was surprised to see about half a dozen people in there, all in surgical gear and lead aprons. Besides Dr. S and Dr. P, there was the x-ray tech, a resident observing, at least 3 nurses, and another nurse being oriented on how to prep patients for procedures. She got me positioned face down on the table, provided a nice squishy pillow for my head, and positioned my arms above my head. Another nurse put EKG leads on my back and put an oxygen probe on my finger. Dr. P asked for someone to get a pillow to put under my hips; he said, “She has a skinny waist.” A nurse then said to me, “We don’t hear that in here very often!”

Once all the preparation was done, the team performed the time out. A nurse gave me 1 mg of Versed, which I don’t think really did anything, but it was a nice thought. I was a little anxious, but otherwise felt ok.

The Procedure

Dr. P injected some local anesthetic into my lower back, which was honestly the worst part of the entire procedure. (I recall thinking the same thing while getting my epidural while I was in labor). I think it’s because you can feel the prick of the needle, as opposed to a dull pressure.

Photo by Anna Shvets from Pexels

Once the anesthetic took effect, Dr. P slathered my back three times with a copious amount of antiseptic. Then, without any fuss, he inserted the giant epidural needle (seriously, they’re huge) at the L4-L5 level of my spine while a nurse rubbed my leg. It wasn’t too bad at all, just some pressure.

After Dr. P inserted the needle, x-rays were done to ensure the needle was in the epidural space and hadn’t punctured the dura (which would have caused even more problems!) Once that was confirmed, Dr. S got to work on my left arm, slathering my entire arm with antiseptic, searching for a spot to place an IV to get the blood for the patch. He tried my forearm first, where he was able to get some blood, but not enough. Then he went to my elbow and hit a great spot there!

Dr. S pulled out 10 mL of blood, which went directly from my arm though tubing and into the epidural syringe in order to maintain sterility. Dr. P injected the blood into the epidural space very slowly to avoid pain and too much pressure. He asked me how much pressure I felt and I told him I didn’t feel anything. The docs seemed surprised at this, but decided to inject 5 mL more. I hardly felt any pressure, but they decided to stop there.

I had 15 mL of my own blood taken from my arm and injected back into my body into a space where blood is never supposed to be. Weird.

The Recovery

Home after my first blood patch
Home after the blood patch, looking like a pincushion!

After I was unhooked from everything and log-rolled back onto the gurney, I rolled into recovery. I lay flat for half an hour and then my nurse gradually sat me up. The docs came to check on me several times and seemed concerned when I told them I still had a headache. To appease them, I fibbed a little and said that I was feeling better than when I came in. They seemed happy with that. But that demonstrates the old-school thinking that all blood patches should completely fix a leak immediately.

Once they set me free, a nurse wheeled me downstairs and David picked me up in the van. Bean was very happy to see Mommy as well!

The Patch Fails

I spent 72 hours after the patch laying flat in bed, which is recommended by specialty centers that treat spinal CSF leaks. (This hospital gave me completely irrelevant post-patch instructions. See above for proper instructions.) I also followed the rules of no BLT (bending, lifting, or twisting the spine), which I planned to do for eight weeks.

At first, I felt no better and even a little worse as the inflammatory healing process began. But after a few days, I suddenly had no pain on the right side of my head. A few days later, no pain on the left side. After 10 days, on the morning of July 4th, I suddenly felt better than I had since before my leak started last December. I had no pain. I had a remarkable amount of energy. The patch worked! It was like a miracle!

Sadly, after 5 days of feeling amazing, the pain crept back in. It continued to worsen and within a few days, I realized the unfortunate truth: the patch had failed after exactly two weeks. Why? I don’t know. It just did. I knew there was a strong possibility this could happen, but that didn’t make it at all easy to cope with.

What could I do now? Ask for a second patch? Get my records ready to send to a specialty center and hope they could fix me? I wasn’t sure.

All I knew was that I was right back to square one.

💛ribbonrx

References:

Featured photo by Sourav Mishra on Pexels. Text added by author.

1: Mokri B. Spontaneous low pressure, low CSF volume headaches: spontaneous CSF leaks. Headache. 2013;53(7):1034–53.

2: Sencakova D, Mokri B, McClelland, RL. The efficacy of epidural blood patch in spontaneous CSF leaks. Neurology. Nov 2001;57(10):1921-1923. [article behind paywall]

3: Jr-Wei Wu, Shu-Shya Hseu, Jong-Ling Fuh, Jiing-Feng Lirng, Yen-Feng Wang, Wei-Ta Chen, Shih-Pin Chen, Shuu-Jiun Wang. Factors predicting response to the first epidural blood patch in spontaneous intracranial hypotension. Brain. Feb 2017;140(2):344-352.

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Gray for the brain, Purple for CSF Leak, Stripes for EDS
Chronic illness, chronic pain, CSF leak, epidural blood patch, invisible illness, SIH, Spinal CSF leak, Spontaneous Intracranial Hypotension

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3 thoughts on “Spinal CSF Leak: The First Blood Patch”

  1. Sophie says:
    January 1, 2022 at 9:42 pm

    I have read three of your wonderful articles. I would love to know what your plan is now after the failed blood patch and how you’re going? At least the fact that the patch worked fit that two weeks is diagnosis enough of a leak! Best wishes to you

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    1. ribbonrx says:
      January 5, 2022 at 1:35 pm

      Hello Sophie! Thank you for taking the time to read my blog! It means a lot to me. 🙂 I ended up having a second patch in August which didn’t work at all. Next week, I will be traveling to Mayo Clinic to see the CSF leak specialists and have testing done in the hopes of locating the leak so it can be fixed. I plan to write at least one post about the experience, so stay tuned!

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  2. Natalie Georgina Haynes says:
    January 12, 2022 at 1:46 pm

    Please could you describe your symptoms of the leak? I and my neuro believe I may have one! Thanks and take care, Natalie.

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