Niki Naeve

About a Blood Patch

All this reminds me that our lives are like seeds you harvest for a future garden. Once you’ve veered off the most direct path, the opportunities to correct that trajectory are almost without limit. 

I lay on the couch like a sloth while Colin stirs pots, shakes spice bottles, and bangs plates around in the kitchen.

Using momentum from my short walk outside, I managed to do some prep work toward the dinner goal, cutting up a bell pepper, some sweet onion and andouille sausage for the jambalaya, setting out all the necessary spices, then I had to tag team him and go horizontal before having the energy to sit up and eat.

Of course, my Visible app is yelling at me.  At 6pm, I have exceeded my assigned “pace points” for the day.  I am somehow surprised how well it seems to know me.  I feel exhausted, and if I look back on the day it doesn’t feel like I should be.  I made rice crispy squares and the stuff didn’t stick together like it should.  So, it went a little awry, is all.  I’d tried the mixer to save energy and that may have been a tactical error…there are rice crispies and globs of combined almond and peanut butter, along with the last of our maple syrup, all over the kitchen. 

That said, I’m tired of being horizontal.  Three straight days of it last weekend – proscribed post blood patch – were enough to last me for a while.  I’m tired of trying to interact visually with the world from flat on my back.  I got a crazy pair of glasses with little triangular extensions which allow you to see down while looking forward, but they’re bulky and uncomfortable, especially with my own glasses underneath. Still, it was a handy change of pace when my neck was tired of trying to watch TV or check email, and I was tired of being alone with my thoughts.

The blood patch, itself, went fine, as such things go.  I was the seventh of eight patients to have one at CU last Friday.  The nurse found a vein to extract blood from my arm without a hitch, (silent but vigorous thanks for that.) Colin and I were given the spiel about no BLT (bending, lifting or twisting) for at least six weeks post procedure, consents were signed, and finally (I admit I asked for this more than once) I was given some Valium.

I’m not sure what I was most worried about.  I was sure the vein wouldn’t perform, but it gave all the blood required (I think about 2 tablespoon) without a second or third poke.  I was positive my bladder wouldn’t hold out for me to be absolutely flat for an hour after the procedure, (and had worn a diaper just in case, though apparently they also have a Purewick system in place,) but it decided to cooperate, for once.  Probably due to the Valium.

I was worried about pain during the procedure.  It wasn’t nearly the gut-wrenching scenario I’d used to entertained  my mind.  I was shown to the CT/procedure room, and a nurse placed three pillows on the sliding table at waist level, and a forth for under my head. 

I tried a couple ways to arrange the pillows, then my inner massage therapist decided to vent about how my neck would be cranked over, one way or another, and they needed a proper face cradle in there.  At which point the nurse produced just that.  It was a bit of an awkward affair, in that the foam inner lining came across and mostly covered my mouth (a hint to stay quiet, perhaps?) but also specifically designed to prevent claustrophobia, with, of all things, a mirror attached to the back. 

So there I was, face down on the table, looking at myself in real time, experiencing the procedure.  Not sure I love that, I thought, but it is nice and spacious in here.  I can breathe, and I don’t have to crank my neck over to one side while whatever pain is to come, comes. 

Since I was already primed and ready, I barely felt the blood coming out of my arm.  Since blood draws are so much painful drama for me, that was a relief.

The doctor (I’d learn later this was not done by the doctor I thought was doing it; he was observing…) placed dots on my back and I went in and out of the scanner a couple times.  Then lidocaine went in two spots: L3-4 and T11-12.

Those with MALS may be interested to know what happened next.  Despite my anxiety about what was about to occur back there, seconds later I noticed a relaxed, happy gurgling going on in my upper right quadrant.  I almost giggled.  It’s like we just repeated the Celiac Plexus Block, (a diagnostic test for MALS in which lidocaine or Marcaine is injected near the Celiac Plexus, diagnostic for MALS,) I thought. 

That was unexpected.  As far as I know, a Celiac Plexus block would normally happen around T12, so they were definitely in the neighborhood.  Incidentally, a simple snack of nuts and chocolate on the way home tasted way better than it should – like a gustatory burst of technicolor.  Same with dinner, and as a bonus I had zero pain after eating for the rest of the day.  That’s a rare occurrence, especially with dinner.

This is exactly what happened after the Celiac Plexus Block.  Though it isn’t in any way why I came in for a Blood Patch, it is a comfort to know we may have, in some way, repeated the Block with consistent results, and confirmation that MALS surgery is likely a good move for me.  Since I’m scheduled for that in June…well, very good to know.

It has also given me second thoughts about removing my gallbladder with that surgery, which was the plan.  I have a theory that there is a chance, however small, that once we release the Celiac Artery from chronic irritation of the MALS anatomy and strip back the Celiac Plexus, maybe, just mayyybe…my gallbladder, (which is barely working now,) will pick up the phone.  But I digress.

My next worry was how the next part would feel.  This is why they want you awake for a Blood Patch – so if they hit anything vital, you’ll scream, I guess. 

Now for the needles in the back.  I was told to let them know about anything I feel; my legs gave me away before my mouth would work.  I could feel the needle inching past the place where the lidocaine had numbed me, and instinctively my lower legs made little kicks.  The doctor gently reminded me to stay as still as possible and tell him when I was feeling pain.  I did my best to comply.

This happened a couple times, but was not in any way excruciating.  Pain is as much about anticipation as the actual event.  When the L3-4 spot was injected, it did seem  to refer strongly to my left Sacroiliac Joint. So when that fired up, he moved up to the T11-12 spot, and went back and forth as the lidocaine sunk deeper and I could tolerate the taking in, gradually, of more of my own blood.

Then it was done.  This team is very quick, which is so incredibly appreciated.  So deft, so unflappable, and so quick.  Whatever happens, I have confidence this procedure was done by an experienced team who knows what they’re doing, so I won’t question the results as I might if I’d seen someone with less experience. 

As instructed, I tipped the car seat back as far as it would go, and Colin drove me home. 

Now, it was time for the next worry – the dreaded RIH – Rebound Intracranial Hypertention.  There’s a decent chance of this – apparently about 27% of BP patients experience it.  On the mild side, it’s a headache which should be worse when lying down (I say should – more on that later.)  On the severe side, it’s an incredibly painful migraine-like pain, which comes with uncontrollable vomiting. 

In case of any of these scenarios, I’m grateful I’ve been sent home with Diamox, a diuretic, and some anti-nausea medication.  (Colin picked it up at the hospital pharmacy for me, just in case it started on the way home.)  They send people home with a full 250mg prescription these days; I’d been warned to start with a quarter pill if I take any.  Diamox will cause you to have to use the bathroom more frequently, and can cause things like tingling in your hands and feet, blurred vision, and confusion.  I’ll avoid it, if I can. 

Surprisingly, Dandelion tea was also mentioned by this Western-trained medical team, as a lighter alternative to the Diamox, without the nastier side effects.  I like that my neurologist is prescribing an herbal tea.

If I do experience RIH, will I be able to maintain my 72 hours horizontal, as directed?  Or will those short breaks I’m allowed, for necessities like the bathroom and eating, gradually become longer and longer breaks, until I’m no longer compliant?

Once ensconced safely on the couch at home, my three-day horizontal life commenced.  I did use some heat, ice and Tylenol for the lower back area, where the injection site was kind of ouchie.  But it was not intolerable, by far.

You’re allowed to lie on your back, sides, or on your tummy, and since I still have the special cushion I used to use for my pregnant massage clients, I have a lovely face-down respite available, as well, which happens to be one of my favorite ways to be positioned in the world.  It’s always a welcome positional release for my neck and back, as well as an opening opportunity for the abdominal compressions.

The back soreness was pretty much gone by the next day, when I noticed two things which surprised me:  One, my upper right quadrant was still moving around more than its usual state of semi-paralysis. Two, I seemed to develop a headache very soon after getting up for my brief trips to the bathroom or to eat. 

And that headache was right where an RIH headache should be – behind my eyes, in the upper, front portion of my face.  Puzzling, as a high pressure headache should be worse when you’re horizontal.  But whatever.  You know me. An original.

The happy gurgling mostly settled as the day wore on, and both my SI joints were pretty sore by the end of that day…but I did also sort of fall out of the hammock.  Yes, it was such a lovely first day of spring on Saturday I simply HAD to get outside.  I imagined swinging there would be a perfect way to be outside while compliant with my horizontal life. So I thought. 

Apparently the hammock did not survive its 4^th or 5^th year baking in the sun and crisping up in the bitter cold outside, intact.  As I started to get out, it split, right down the middle.  My butt poked through and bounced on the hard flagstones below.  Thankfully, part of me was still hung up in the rest of the nylon fabric, so I don’t think I hit hard.  Still, it might confuse reasons for some low back pain.

The back of my neck was also kind of sore.  I was unclear if that was procedure-related, or the result of trying to interact with the world visually whilst on my back.  Late that afternoon, a hack for that arrived in the mail, recommended by another CSF Leaker:  Lazy Glasses. https://www.amazon.com/dp/B01MXF4QXP?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1

These clever optical inventions have built-in Prisms, which allow you to see down while looking forward.  So, you can lie down and watch the television, or sit up and see what you’re knitting on your lap.  Brilliant, but not the most comfortable.  They’re pretty bulky.  I added distance glasses underneath to watch TV and readers to work on my laptop, which added to the bunk.  Still, a welcome change to the horizontal life.

You may also notice another of my favorite things in the photo: my Elastogel cranial cap.  I use a variety of these flexible gel packs, which are covered in a silky, soft material and can be used heated or cold.  I swear I don’t get kickbacks, but I brag about them all the time.  https://www.elastogels.com/product/elasto-gel-hot-cold-therapy-cranial-cap/?srsltid=AfmBOornyLgcEikUWMB4p-pOmd6iV8OjjGBEdhleHCmtG-AL-EYbjF4N

Another handy tool (I had one around from my TC surgery) is a grabber tool like this one, which makes fun squeaky sounds when you squeeze it.  I enjoy chasing Colin around with it, threatening to pull him around by a belt loop or pinch his butt.  Seriously, though, it has kept me from having to reach down to the floor many times.  https://www.amazon.com/dp/B07WRG21LX?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1&th=1

The next two days were much the same with the head pain.  I’d notice if I was up for a minute or two, my head would hurt and I’d get lightheaded.  If I didn’t go down, next my chest would hurt.  If I still stubbornly remained upright, next my stomach would get upset. 

I developed some pain in my very low back and suboccipital area, but nothing overwhelming.  In fact, due to my flat life and lack of activity, my overall pain levels were actually much lower than usual.  Still, I was holding my breath.  Will I get the dreaded RIH?  When will it come?  What will it feel like?

By the end of the 3rd day, I had pain on both flanks.  The next morning, my first day of uprightness since the procedure, that pain remained.  Ever the scientist, I threw a Lidocaine patch on one side and some of my homemade marijuana balm on the other.  They both felt better by the end of the day.

After 1-2 hours upright at my desk or in any chair, I was done, even with my legs up on a stool.  It wasn’t a terrible headache, but present, and I was exhausted.  I realized the adjustment to uprightness was going to take a little while.

In the next few days, my symptoms were confounded by the fact that my chest hurt. Once or twice a year I get this “chest thing,” which involves feeling like an elephant is standing on my chest, mindbending fatigue and, of course, a headache.  I’d had a cold about two and a half weeks before the blood patch, and arrived a little phlegmy.  My lungs, possibly on the mend my then, perhaps didn’t appreciate being forced horizontal for three days.  It’s all confusion.

The one thing I’m clear on – and I’m never clear about anything – is the headache comes on with being vertical.  It’s better when I return to bed. 

So, is this headache low pressure, high pressure, or…other?  Exacerbated POTS?  The “chest thing”?  I start using my inhaler, meanwhile making calls to the people to get the steroids I usually need to get out of this.

Over the following week, under the “No BLT” directive, familiar since I’d had the same limitations after for Tethered Cord surgery, I once again became an expert at picking things up with my feet.  Truly, it seems when you’re on No BLT restrictions, you automatically drop 100% more things on the floor than you did before. 

I contact the blood patch nurse and ask her opinion.  She’s not sure about all the stuff, but she does reassure me that I’m not feeling anything terribly out of the box, and probably out of the woods for the possibility of RIH.  Thank goodness.   I finally exhale in relief. (Spoiler alert – I think I hit a full-on episode of RIH more than three months later, three weeks after MALS surgery…but that is another story!)

The sixth day after the patch, I woke up feeling especially tired.  I managed my way to Physical Therapy and we discussed the confusion of the preceding days’ symptoms as well as practical techniques for complying with No BLT when Colin is out of town, such as going down on one knee if I need to get down to the floor.  As for the rest,  we arrived at no particular conclusion.

Later that afternoon, I collapsed on the couch, more than my usual level of exhausted.  I just felt ill.  My stomach and chest hurt, I was very lightheaded, and now, finally, a headache worth mentioning.  Could the Trelegy inhaler be causing any of this?  I made two cups of tea, one dandelion for the possibility this was finally the dreaded RIH, one ginger for my tummy.  I sat on the couch with heat on my belly and an ice pack on my head, sipping carefully at both teas, afraid to make anything worse.

The following day I woke with a bit of a headache.  Maybe this is RIH?  But no, it is still worse when upright.  My P.T. says high pressure can manifest itself that way, but I’d be the first person she’s seen with that particular variation.  Leave it to me to be the oddball.

I drank some Dandelion tea, for real this time, fully committed to the experiment.  The headache did abate somewhat.  It doesn’t feel expansion-y, like people say a high CSF pressure headache rightly should, more like just – pain.  But the fact that the tea helps is more evidence in favor of it being high pressure. 

I want to know, because if I’m in high pressure we can be more convinced the procedure worked and the patched clots are holding.  And this will strongly direct my next steps.  If I go into high pressure and stay there, my ENT wants to do a jugular decompression like we did on the right side, but this time on the left.  If I stay in low pressure, he just wants to repair a CSF leak behind my right eyebrow.  So it’s important to know. 

To confound the issue, we get our first big thunderstorm of the season over the weekend, and spring allergens lurk everywhere.  A sinus headache is very hard to distinguish from one caused by a change in barometric pressure.  That headache is hard to distinguish from one cause by high CSF pressure.  Still unclear about the nature of the head pain and feeling a bit swimmy, I go about my days as best I can. 

Throughout the week, the pattern continued; when upright, I first get a headache, then breathless, (though the chest pain subsided.)  Then finally, if I don’t go down, stomach upset.  Similar to my day-to-day pattern, only more delineated, more clear.  More extreme.

The ”No BLT” thing just feels silly, though I know intellectually it’s not.  The idea is the blood patch is getting stronger and we don’t want to do anything to disturb it, like any healing wound.  But I don’t feel any reason for it, somatically.  Like when I’ve done this before, it’s been after a surgery, when I can intuitively feel in my body I’ve been recently sliced and diced. It makes perfect sense to my brain that I should be limiting motion.  This – it feels really princess-y to ask Colin to unload dishes from the bottom rack of the dishwasher when I’m perfectly capable, myself.

I hate being dependent like this. It goes against everything I pride myself on – independence, self-sufficiency, accomplishment. But it’s also a reminder of certain truths.

I think, as human beings, we are biologically programmed to become depressed and lose the will to live when we find ourselves dependent upon others for basic tasks.  Evolutionarily, it once made sense.  In a hunter-gatherer world, someone who can’t bend, lift or twist would slow down the tribe.

But we also have to acknowledge that our “tribe” may not want us gone.  As hard as it is to convince our primal brain that we have a purpose, the ones who love us probably actually want to help us rest and recover.  It gives them a sense of purpose, of belonging, and they are part of a loving ensemble, which includes you, by choice.

And chances are, you’ve helped someone in need before. Or will do. Didn’t that feel good?

So, let us try to consider acceptance of help as an act of generosity and love, as those around us wish for their actions to be woven into our physical and mental healing, and not our self-lashing or self-loathing.

Since becoming a homeowner and beginner gardener a few years ago, I’ve become a seed hoarder.  A week after the Blood Patch, as I stand at the kitchen sink scooping oodles of plump seeds out of a gorgeous, terracotta Kabocha squash, I’m reminded that the universe gives us an almost comic number of opportunities to fail, then get it right again.

Nine days post blood patch, I’m still a woozy, tired, and prone to headaches when I’m upright.  The neurology nurse says it often takes about thirty days for the CSF pressure to regulate itself.  So, I’m settling in for the uncertainty.  Given that the entire system is muddled with the other vascular compressions, I’m not expecting it to settle right away.

Whatever happens, there are plans in place.  If “A” happens I’ll do “X” and if “B” happens I’ll do “Y.”  None of these decisions comes with any guarantee it’s the best one for my body.  All I can do is make the best decisions I can with the information I have, and move forward. 

All this reminds me that our lives are like seeds you harvest for a future garden.  Once you’ve veered off the most direct path, the opportunities to correct that trajectory are almost without limit. 

Update:  In the following months, I’ve had what feel like a few gains.  One, I feel a little more upright time has been at my bidding.  Two, I had one of my immunologist’s vampire-like blood draws – 24 tubes- and managed to fill all those tubes with a single poke.  One.  Uno.  That has never happened before!

Which leads me to, three: I believe these gains are due to a baseline higher blood pressure than it has been.  I wish I’d measured it regularly right before being patched, but my post-patch readings have been certainly (though modestly) higher than the average of the ones I have from the more distant past.

I’ll lose all that, at least temporarily, after my MALS surgery.   (I know because I’m writing this two weeks post MALS surgery.)   More on that next post…