Talk with Me - do you have something complex happening with you?

I want to send a shout of of gratitude and thanks for everyone who has been part of my healing process. ♥️ many of my kind friends here have been enormously supportive, and many others (outside of Stacklandia) have cared for me at home, ferrying me to MD appt, getting medicines, kept me company, done all the errands, plus traveling with me to care for me while I’m in process down in California. It’s a huge gift to me, and one I could not live without. I will pay forward these kindnesses.

Invisible Illness is always complicated. Is there something you too have going on that you’d like to talk about? To have a friend understand? To find a way to ask people for what you need? I’ll help if I am able to, with words, compassion and witnessing for you

All these space images come from NASA- this one kinda looks like a heart to me.

A dear friend, and a couple other pals have recently asked me what’s up with needing to have multiple surgeries and patches, and why they haven’t been able to “fix” it yet. It’s complicated. (as you’ll see if you read along)

I realized I might never have been clear about what’s happening with my health. I’ve cut this story as short as possible, but it’s still a very long post. I hope that all of you can see why I’ve had to give up driving, almost all hobbies, reading books, cooking great meals and must lay flat 90% of every day. It’s been quite the journey, and it’s not over yet.

Almost five years ago, June 4,2020, a doctor made a couple mistakes while placing a pre surgical epidural, and accidentally poked at least three holes in my thoracic “dura”

The dura is a fascinating part of our bodies, and has an enormous job to do, all unseen. Dura means “strong mother”. And indeed it has to be.

The metaphor I’d like to share for the duration is that of a three foot section of garden hose, sealed on both ends into a continuous loop. The dura wraps around the spinal cord, and protects it, as well as around the brain to buffer it as we move. The fluid (cerebral Spinal fluid - CSF) within the dura (example:hose) needs to always be at a consistent pressure to properly protect the spine and the brain. It acts like a shock absorber. This closed loop within our body is replenished three to four times per day (opinions vary among doctors as to how many times). The CSF buffers, cleanses out the various wastes and byproducts.

When a hole is poked, it springs a leak. And if you imagine the garden hose again, when laying flat, it leaks out to the level where the fluid is below the leaking hole, then it stays that way until the hose is moved. If the garden hose with a leak is now held upright, it drains out until it’s below the leaking hole. (Note: not good at all, in fact, terrible, rotten, nasty, and insidious)

When the CSF is leaking out of a hole, many problems happen.

• the brain hits up against the skull and this hurts (a lot)

• Migraine scale headaches happen at the back of the head, only eased by hours of laying flat so that the CSF can replenish to a higher level (but still isn’t enough)

• Many symptoms: nausea, vomiting, falling, dizziness, passing out,lightning bolt headaches, numbness in arms and legs, blurred vision (from the brain pressing in the optic nerve, which can cause permanent damage) and brain fog / confusion.

I have had all these symptoms for the majority of the last five years. The only “at home” option is to remain laying flat, with no bending, lifting more than five pounds nor twisting… and none of that care heals the dura, simply reduces symptoms.

The body automatically tries to produce the amount of CSF to maintain the needed shock absorber pressure. It’s impossible for it to produce enough while there is still a leak. Symptoms continue to worsen the longer there is a leak, because the leaks tend to get larger.

At first the MDs provided me with blood and fibrin patches. I had three blood patches (which use my own blood) and six fibrin patches (these are kinda like epoxy in that it’s a glue mixed with coagulating blood factors from other donors.) The patches are risky, and need to be done under skilled guidance. Too much and it can collapse the spinal column. Allergic reactions to the analogous blood is also a risk.

The patches act like a bandaid of sorts (or a piece of duct tape if we return to the garden hose metaphor) to seal the hole. Under the patch, the dura takes a while to heal. Sometimes more than one patch is needed to allow the dura time to heal. And other times, the dura continues to leak no matter what.

In many cases, the hole / damage to the dura is too extensive for the dura to heal on its own with only a patch. Blood patches are reabsorbed by the body at about 4 weeks, fibrin patches last about six weeks. If the dura hasn’t healed beneath them, then the leak starts again.

Surgical intervention is a serious business, and requires a highly skilled neurosurgeon. Damage to the spinal column is high risk. I am fortunate to have the best neurosurgeon, known internationally for his work over the last 20 years in the specialty of repairing CSF leaks. He is located in Los Angeles Ca.

Just to interject here, and answer an oft asked question, no there are no MDs in Washington State nor Oregon who are yet as skilled or trained enough in this condition, there is too high a risk for me to work with locals who are in training. It is a rare condition, affecting 1 in 100,000 people.

I have had three spinal surgeries at Cedars Sinai in Los Angeles thus far in addition to all the patches over the last five years.

The first was 11/2023, where the neurosurgeon wrapped a large portion of my thoracic dura with “duraseal “ and fibrin glue. It’s a permanent part of my spine now, in the metaphor I was using, imagine wrapping a large piece of rubber and glue over the original leaky hole in the hose. After this surgery, was the longest time I stopped leaking (2 months) then my dura blew another hole.

This second hole leaked directly into a vein (not into the muscle tissue as previously ) and thus was hard to find. It’s called a “venous fistula”.

There are only a few tests that can locate these leaks, and only three hospitals in the entire US who have the machines capable enough to detect them. (Mayo Clinic, Duke University and Cedars Sinai)

For me this has meant multiple trips to San Francisco and Los Angeles for urgent medical care and surgery. Medicare and my supplemental insurance has covered the surgeries and medicines, while I have paid out of pocket for the flights, hotels, food, Ubers, and medical transports.

My neurosurgeon went in on March 31, 2024 and cut another place open above my spinal column(this one slightly higher than where the first surgery was in my thoracic spine) and clamped off the venous fistula with an aneurysm clamp, which sealed it! I lasted about 6 weeks this time, and then I had another new leak occur.

With this third leak, the neurosurgeon suggested my anesthesiologist in San Francisco at Stanford University, attempt a fibrin patch to try and seal it, although they were not certain where the leak was, they had educated estimates. I went back to SF for that fibrin patch. It didn’t help at all. I continued to leak.

I ended up having to wait (as does everyone with this condition) for months to get back on the test machines schedule and surgical schedules. By now, I’ve been leaking for the third time since mid May 2024, and very unhealthy (5 months). I have only been able to lay flat all this time, being upright for about fifteen minutes before fainting or intense head pain and all the other symptoms occur.

I went back (October 30 2024) to Cedars Sinai for the complex tests (done under full anesthesia, where they stop my breathing several times in order to obtain clear images) and the radiologists located the second venous fistula. The venous fistula was located at the bottom of my cervical spine (C7-T1) this is an even more high risk location due to all the nerves in the neck and the risk of accidentally severing them in surgery. The real risk is quadrapeligia.

In an attempt to avoid surgery in this risky location, the neurosurgeon and radiologist offered me an “embolization”. This is also done under full anesthesia. First they go in with an MRi and do a “vein mapping” with contrast under anesthesia, then the next day, they insert microscopic tools up thru the vein system to reach the leaky dura place within that vein, as you can imagine it’s super complex. They inject it with onyx glue, which now also is a permanent part of my body, and is opaque so X-rays and MRIs and CT scans cannot see thru it.

I grew even more ill after this procedure for three weeks. My body did not respond well to the onyx. my leak was partially sealed for only about ten days. I alternated between low pressure (when leaking CSF) and rebound high pressure (after the leak is sealed and the body is overproducing CSF) for another two weeks. By now it’s Dec 2024.

I got back on the schedule for more complex tests, at the end of January (which is when the LA fires happened.) Thru serendipity, I ended up rescheduling my surgery to March 2025, which turned out as a blessing since I wasn’t there during the fires. The poor city was devastated and most surgeries were delayed by months.

My last trip, March 30-April 4 2025, was for surgery to repair the missed venous fistula from November the prior year. The tests were again difficult, and they couldn’t exactly locate the leaky dura place due to the opaque onyx in that area. The leak (the same one from October ‘24) was hidden from the exams.

Thank goodness, my neurosurgeon is fabulous, and he trusted himself to find it. They operated on April 2,2025 at the cervical spine and he clamped it off with another aneurysm clamp.

Again I was sealed for two weeks, and only in deep pain from the cervical spine surgery. Yet, in mid April, I went back into low pressure, with all the symptoms back again and me being able to only be upright for 15 minutes at a time.

My neurosurgeon has now requested that I go back to Stanford to get another fibrin patch, and hopefully they can find the correct place and seal this new leak, but they are guessing at the location (based upon 20 years of research in this field) this option is best since it is less invasive (tho still done under anesthesia). Hopefully I can avoid another spinal surgery. After all of these procedures, patches, tests aNd surgeries, I have to lay flat as much as possible for three days, only getting up to use the bathroom.

I’m currently scheduled to fly to SF mid June. Until then, it’s 15 minutes at a time upright, followed by hours of laying flat.

Those who have visited me know that I can push myself (not a good choice, but still I do at times) to be upright longer, but I pay the price with very bad symptom reactions, and the need to lay flat twice as long before the migraine strength headache lowers to a tolerable level. It usually causes a flare up that lasts for days.

Thank you for everyone who has been helping me on this journey…

I could not have done it without you.

You truly don’t know how much you need people to love on you, check in on you, let you cry on their shoulders, travel with you and do errands for you until your world is stripped out from under your feet

My heart is ever so grateful to all who have invested their time and love to care for me.

So where am I today?

Pain management has been a serious challenge. I am allergic to all opioids, and synthetic opioids and codeines. During my April trip, I discovered I am also allergic (anaphylaxis as with the others) to hydromorphone.

It took a local pain clinic to find a pain medicine I am able to tolerate, and I’m grateful.

While I fully trust and respect the incredible team of MDs who care for me, I cannot say with any degree of certainty that this will be the last medical procedure / surgery I have.

There is a small group of the people whom I have met who also have this condition, who have had multiple leaks and venous fistulas such as mine. Some have chosen to take a break from treatment, and live their lives while remaining flat. They are waiting medical research to catch up with how to fix this condition.

Others, like me, are pressing on, and they have had 13-20 patches, and five to ten surgeries.

I am doing whatever I am able to in order to have a life once again.

And I’m not ready to give up yet.

“Together” is a compilation of thoughts by Teyani Whitman. All posts are free, along with the first half of my book Staying Together. For every three monthly paid subscriptions of $5, I will donate $5 to the nonprofit, The Ocean Cleanup. Thank you for supporting both me and the amazing work of saving our oceans and rivers.