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Lumbar Puncture

I recently underwent an exploratory lumbar puncture, and I wanted to share my experiences and talk about why my neurologist and I opted for this somewhat risky procedure. I’ll talk about some of the reasons to undergo exploratory lumbar punctures and how they are performed. I include the guidelines and procedures both you and your doctor will likely be following before during and after the procedure. This way you’ll be prepared and cool as a cucumber the day you or your loved one undergoes this procedure, also known as a spinal tap.

As a sufferer of intractable migraine for over a decade, this is a procedure I have long wanted performed, but been equally afraid to undergo, so I never pushed for it with my old neurologists, who didn’t seem to be taking it at all seriously. It took me a long time to decide the procedure was for me. After finally getting my migraines under control just this past year and realizing it did nothing for the terrible pressure in my head, it had me wondering if more needed to be done than just finding the right migraine medication(s). This ever growing pressure, which became almost unbearable this summer, was accompanied by sharp pain in my head that was positional, intermittent vision and hearing loss, non-stop tinnitus, and a strong pulse in my ears that had the power to turn my tinnitus into the never ending *beeeeep beeeeep beeeeep* of an alarm clock; and the on/off switch seemed to be connected to standing or straining.

Then I had the worst dystonic attack I’ve ever had and things only got worse from there. That’s when my head pain specialist and I knew it was finally time. If I’m being honest, it was probably way past time. You can read more about it here: Why Vacations Don’t Exist for People with MCAS.

Enough about me. Let’s learn more about CSF, lumbar puncture and find out what to expect if you need to undergo the procedure.

The Role of Cerebrospinal Fluid

When my doctor started talking about performing a lumbar puncture for signs of high pressure known as intracranial hypertension, I did what I always do, research everything I could find on the procedure, from what to expect during and after the procedure, what type of conditions can be diagnosed using LP and what exactly cerebrospinal fluid is, along with how its analysis can be interpreted. Join me in learning more about this procedure now.

Cerebrospinal fluid is defined as a “clear watery fluid which fills the space between the arachnoid membrane and the pia mater.” Essentially, it’s the liquid that fills your spinal canal and surrounds your brain and spine. CSF serves several important functions in the central nervous system. CSF cushions the brain and spinal cord against shock. It provides a barrier. It helps to maintain pressure at a constant level inside the skull. Finally, CSF delivers nutrients to the brain and carries waste products away into the bloodstream. CSF is protected and separated from our blood by the blood-brain barrier. There is about 100-150ml of CSF in the normal adult human body. It is primarily made up of water and is alkaline. CSF is continually produced, predominately by the brain’s ventricles, and is entirely replaced every 6 to 8 hours.

An increase in the volume of blood or brain tissue results in a corresponding decrease in the fluid. Conversely, if there is a decrease in the volume of matter within the cranium, as occurs in atrophy of the brain, the CSF compensates with an increase in volume.

Cerebrospinal Fluid-Britannica Science

What is a Lumbar Puncture?

A lumbar puncture (LP) is often performed to check for the presence of bacterial, viral and fungal infections, excessive intracranial pressure, a cerebrospinal fluid (CSF) leak, cancers of the brain or spine, subarachnoid hemorrhage (bleeding on the brain), or to aid in the diagnosis of other neurological conditions such as Guillain-Barre syndrome and multiple sclerosis or a mitochondrial disease. LPs can also be performed for injection of chemotherapy or other medications into the spinal canal, as directed by your physician. They can be performed on an emergency basis, such as in the case of injury, or be prearranged, which is often the case with non-emergent exploratory procedures.

A physician usually performs the procedure, however even a well trained nurse practitioner can administer a spinal tap. My own procedure was performed by a nurse practitioner in training who was supervised by a neurologist; he did a fantastic job.

To perform a lumbar puncture, a thin, hollow needle is inserted into the spinal canal. If pressure is a concern, then your neurologist will request a reading of opening and closing pressures. Mine was 14.5 to begin, a middle of the range number that could be too high for some and just right for others. My closing pressures were a 9.5, after they had removed two small vials of CSF to be sent to the lab for testing.

Is Lumbar Puncture Safe?

Spinal taps have a reputation for being a high risk procedure, likely due to early failures during the development of the procedure back in late 19th century. This was in part due to the lack of imaging at the time. Today the procedure is much safer, with the advent of imaging technology, prospective and retrospective study have informed the development of clinical features that are associated with low risks and complications.

In trained hands, Lumbar Puncture is a straightforward procedure with few complications. According to The Health and Social Care Information Centre for England, there were 55,427 episodes of hospital care that included a diagnostic Lumbar Puncture in 2011-12, 0.53% of all hospital consultant episodes, which in Northern Ireland’s health system, with 600,000 admissions annually, would equate to about 8 diagnostic Lumbar Punctures per day.

“Diagnostic Lumbar Procedure,” NBCI

Preparing for a Lumbar Puncture

Before administering a lumbar puncture for your symptoms, your doctor may perform additional testing. These can include MRI, CT and blood tests which check for your ability to clot, as well as your kidney function.

Prior to having a LP, your medications will be reviewed, along with any recent illness, medical conditions or allergies. If you think you may be pregnant, you also need to alert your team right away so the necessary precautions can be taken. You may be asked to discontinue the use of any drugs which may thin the blood, from NSAIDs (advil, aleve, toradol, etc.) to heart medications such as Warfarin (Coumadin®), Pradaxa®, Heparin®, Lovenox®, or clopidogrel (Plavix®). Generally speaking, you can expect to be off of these medications anywhere from 3-7 days prior to your procedure to ensure good post-operative clotting of the needle puncture.

In addition to reviewing any and all medications taken, including supplements, any allergies also need to be discussed and you should provide a complete list to your surgical team so they can help to ensure your safety. This was a long list for me and my surgical team went so far and to cover every substance I would come into contact with the day of my surgery and again, just before their use to ensure no mistakes were made. I found this incredibly reassuring and would love to see more surgeons employ these tactics.

On the day of the procedure, you will be asked to refrain from eating and drinking for a period of time prior to your procedure. If only a local is used, as was the case for me, you can eat up to two hours prior to your procedure. If twilight sleep or sedation is employed, you may need to discontinue foods by midnight on the night before your procedure.

Finally, you will need to be accompanied by an adult who can drive you home and stay with you for at least 24 hours after your procedure. You may be given a gown for your procedure or your clothing may be draped in order to protect it and create a sterile field.

If the procedure is to be performed on a child, parents may be allowed to accompany them during the procedure.

How a Spinal Tap is Performed

Image by David Mark from Pixabay

Most scheduled LPs are out patient procedures and you can usually go home within 30-60 minutes of completion. A LP is performed with the use of fluoroscopy. In fluoroscopy, an x-ray is taken and then converted into a digital image your physician can see on screen. This helps them to be very precise when placing the needle in the spinal canal, reducing the danger of injury to the spinal cord.

At the beginning of the procedure, an IV may be placed in the arm or hand to administer the sedative, if one is given. You will likely be asked to lay on your stomach and may be asked to position your arms above your head with your face to the doctor so you can easily communicate. If you have difficulty with this position due to spine issues or other disability, ask the team to help you get into a position you’re comfortable in. It is very important to be able to lay still during the procedure, so you must be comfortable.

Once in position, the patient will be draped with sterile cloth and the surgical field will be sterilized with a preparatory solution, such as Betadine. A local anesthetic will be administered, which may feel like a pinch or sting.

The x-ray is taken and appears on the fluoroscopy monitor to guide your doctor. Once she or he has located the correct spot, they will begin the insertion of the needle and may occasionally take other x-rays to determine the depth of the needle is correct. There are several layers to get through, and while you shouldn’t feel pain, you may feel the needle access each layer of tissue and feel a pop as it goes through the final layer. It’s best to keep this in mind, so you remain calm and still despite these strange sensations. According to Doherty and Forbes:

The Lumbar Puncture needle pierces in order: skin, subcutaneous tissue, supraspinous ligament, interspinous ligament, ligamentum flavum, epidural space containing the internal vertebral venous plexus, dura, arachnoid, and finally the subarachnoid space.

Consent should include the risk of Post-Lumbar Puncture Headache (PLPH), which has a published incidence of 32%. Other risks to discuss include failure to obtain CSF, localised bruising, bleeding and local discomfort at the injection site. Iatrogenic meningitis and nerve root injury are exceptionally rare.

“Diagnostic Lumbar Procedure,” NBCI

This is important, not only because you can feel the needle break through some of these layers, but also because the puncture of ligaments can cause some soreness and back pain in the days following the procedure and people with collagen disorders should probably consider the need for extra healing time due to our deficiency and slow healing times.

Once the needle is inserted, you may be helped to reposition yourself to your side, taking the fetal position. The fetal position is the proper position for which spinal taps are usually performed when entering from the lumbar region of the spine.

If opening pressures are requested, as in the event of suspected CSF leak or IIH, the doctor will call out these numbers to the nurse for documentation and may or may not be commented upon. Then the appropriate amount of CSF fluid will be removed for testing.

During the procedure, you will be asked to monitor how you feel and whether or not your symptoms are changing as your fluid is collected. I didn’t feel any real difference during the procedure, however by the time I left the facility 30 minutes later, my headache was completely resolved, I was no longer light sensitive and my vision cleared as if the ward I was on had gone from dismal and dreary to full sun; a sun I could now look toward without intense pain. This indicated to the team that my pressures were indeed too high for my particular physiology. Once an adequate amount is removed for testing, the needle is removed, a band-aid is applied and you are asked to lay on your back to allow gravity to help with the work of closing the wound.

Post Procedure Expectations

Your team will likely check on you a couple of times while you recover in post-op. They will ask you questions about your symptoms and ensure everything is fine before sending you home. While it is important that you lay flat in your bed for a period after your procedure (usually 24 hours), you can simply tip the seat back in your car for the ride home.

Be sure to follow the recommendations of your care team to facilitate healing and avoid infection, which could be very serious. For this reason, it’s also very important to keep your team informed about any new symptoms or changes you experience after your procedure, both to ensure your safety should complications arise and in the event that further testing or procedures are indicated to take care of any problems which may arise.

It is important that the patient lay flat both to facilitate healing and to help avoid a spinal headache, which can happen if too much CSF is removed or continues to leak. Each day beyond the 24 hour period, you should attempt to be up and about. If no headache occurs, you’re generally free to go on about your life, with the exception of swimming and bathing (showering is okay). However if a spinal headache begins, the only solution is to lay in bed for another day. This process is repeated over the next two days. If on the 4th day you rise and experience a headache, a blood patch may be necessary.

A blood patch requires a second lumbar puncture in which your own blood is used to bring the pressure back up and to help facilitate clotting.

Barring any initial complications which might indicate the need for a blood patch, some patients may experience a spike in intracranial pressure within a few weeks after the procedure which would indicate an overproduction of CSF. In this case, another lumbar puncture will be performed to bring the pressure back down and a stent may be inserted to maintain drainage.

CSF Testing and Analysis

There are many tests that can be performed on CSF. Which tests your doctor orders depend largely on your symptoms and the outcomes of other diagnostic testing. Tests range include the observation of its physical characteristics (pressure, color, viscosity, turbidity), chemical tests to analyze the composition and content of fluid (immunoglobulins, proteins, LD, CRP and others), microscopic examination of red blood cells, white blood cells and cytology, and infectious and parasitic tests. For a complete list with detail, go here.

My CSF Analysis:

Because my doctor and I were most concerned about intracranial hypertension due to my specific symptoms, most of my tests were directed at this problem, with a few extras to rule out other possibilities. These are the tests he ran:

Rather than showing you the negative ones, I’ll include images of the surgeon’s notes, along with those which were abnormal.

This test indicates my blood-brain barrier is slightly impaired. This could explain why my “brain fog” has continued to grow, as everything that’s come up in my search on the subject points to either Alzheimer’s Disease or multi-infarct dementia (MID). I don’t find this overly surprising as my grandmother had Alzheimer’s and my mother was showing definite signs as early as 50. It seems I must beat them to every diagnosis. I will likely write more on this subject as it’s entirely too vast and somewhat off-topic, but obviously I need to explore this further.

The high protein levels in my CSF may indicate there’s brain injury (possibly due to a mild chiari malformation that hasn’t been caught on a supine MRI, but could also be a sign of a tumor, bleeding, or nerve inflammation. This needs to be explored further.

Next Steps

As you can see, more exploration is necessary based on my test results. It will likely be a while before I have an official diagnosis in light of these tests. My doctor started by putting me on a diuretic, which will likely interfere with my POTS and have to be withdrawn. If my pressure climb again, I may need a repeat procedure and a stent placed. Until I meet with him in mid- September, I will not know for sure if he is diagnosing me with intracranial hypertension, but it seems highly likely. At this point, he would have no choice but to label it as idiopathic since no source has yet been discovered.

For many people with EDS, the cause is often related to craniocervical instability (CCI) and/or Chiari malformation (CM), though sometimes a tear in our delicate soft tissues is indicated as the cause of a CSF Leak. Interestingly, CSF leak is often what causes Intracranial hypertension. While I have struggled with symptoms of these problems for years, I need a qualified neurosurgeon who understands and can order proper flexion and extension MRI’s to either confirm or rule out CCI or CM. As much as I love and appreciate my head pain specialist, it’s beyond his realm of expertise.

CCI, CM, CSF leaks and IIH are all topics we have yet to explore on the Zebra Pit. They are topics I plan to cover in the coming months. Of these conditions, which do you think we should cover first? Are you affected by any of these conditions? We’d love to hear your experiences with lumbar puncture and diagnosis! Let us know about it in the comments.

As always, thanks so much for joining us! I hope you found this post educational and interesting. I hope you’ll share it with others who might also find it useful.

Resources and Further Reading

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When my doctor started talking about performing a lumbar puncture for signs of high pressure known as intracranial hypertension, I did what I always do, research everything I could find on the procedure, from what to expect during and after the procedure, what type of conditions can be diagnosed using LP and what exactly cerebrospinal fluid is, along with how its analysis can be interpreted. Join me in learning more about this procedure now.
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The Vacation Aftermath

Pictured above: a portion of the Mackinac Bridge taken by David Curtis from St. Ignace. We had to travel it twice. It’s 5 miles long and the world’s 5th longest suspension bridge. Have I mentioned I have a bridge phobia?

As I write this, I’m waiting for the alarm clock beside my husband to tell me it’s time to get out of bed and prepare for my first lumbar puncture (spinal tap). I took a late appointment, so I should have known I’d sleep no later than 4 in the morning. In reality, I’m doing pretty good if I manage to make it to 4. That’s why I went to sleep at 8pm, an hour earlier  than my usual bedtime. People laugh about my toddler bedtime, but it keeps me from coming apart at the seams. Join me in my distraction; Part two of my vacation saga, also known as the aftermath.

Vacation brought to an abrupt halt, I lay in bed the whole weekend while my husband did the grueling 24 hour drive in less than 36 hours roundtrip. I was not eating bon-bons. I was resting and sleeping and doing my best to stay occupied, mostly through social media:

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Feeling a bit better today, but it's going to take time to recover. In this video, I mention dystonia, so I'm also supplying some additional information about it. Neither me or my husband thought to capture my episodes on film, but it's now a goal, as I really need my doctors to see what I'm experiencing, as it's yet one more problem that doesn't show up on tests. I'll share it if we can get one, but I'm certainly not going to try to make it happen. The photo of the woman in crisis? That's how my body contorts. My dystonia started out as an occasional tic in the head and neck region. Then it began to cause tremors. Then I started having full on seizures that centered mostly in my solar plexus, head and neck. Then my arms joined in. Now I am just one big circus of jerks and paroxysms when it happens. When they come on, it feels like a POTSie faint; things start going numb, my vision darkens and I begin to shake. I get a terrible and sudden migraine, almost always with auras. Unlike POTS, it doesn't clear up when I lay down. I just have to ride it out. 3 days later, I still feel like I was beaten with a baseball bat over every inch. I'm still getting migraines daily and every time I stand for longer than a few minutes, I can feel another attack start to build. At least 57% of EDSers have some form of dystonia. I am by no means alone. I suspect, rather than it being another genetic thing, it's more likely undiagnosed craniocervical instability and/or chiari. My symptoms always increase with time spent on my feet, particularly the neurological symptoms. We don't have the funds to get me to a doctor who could actually dx it and there are few options for treatment even if we could. #ehlersdanlossyndrome #edsawareness #mcas #potssyndrome #trifectazebra #flareup #dystonia #dystonictremor #dystonicstorm #comorbidity

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When David arrived home Sunday evening, we quickly fell asleep and stayed in bed until my doctors appointment, the next day.

We made our way into the doctor’s office Monday afternoon, David playing porter and nursemaid and me in my used, ill-fitting wheelchair. Dr. B is an incredibly compassionate and caring person with a keen mind. He lost his mother to cancer as a young man, a fact he may not share with everyone, but I see it as a motivating factor to his choice of career and level of compassion. Often, I think he treats his patients with the same loving care he wanted her to receive.

He’s the perfect combination of intelligence, curiosity and concern. He listens. He thinks. He’s not always the best at follow-through, but if I have to drop an extra email or call to get things done with him, I am willing. He’s my dream doctor in every other way. He’s even a pleasure to look at. Pinch me.

We go over the dystonic crisis, a play by play. I show him the article and photograph. “David said I looked exactly like her.” He nods his confirmation.

A woman in dystonic Crisis Seizes on a gurney, from Cognitive and Psychopathological Aspects of Ehlers-Danlos Syndrome

We discussed my last workup and I present him with the results. My neurological records in my “hospital bag” go with me every appointment now.

Dr. B decides he doesn’t want to handle this alone. “We have a world renowned head specialist. Let’s utilize him. I’ll talk with him and give you a call.”

We decided since I already have a standing script for baclofen 3x a day, as needed, that I should try taking it regularly it to see if it prevented future attacks. After all, I’d been taking it regularly to ween myself from Topomax and wouldn’t you know I discontinued it just a couple of weeks before.

While waiting for the doctor to call back with insights from his discussion, I continued to shoot videos of the progression of my flare, which was clearing up a bit faster than normal because of an unusual supplement I found that helps with the symptoms of dysautonomia, called Parasym Plus.

Unfortunately, while the Parasym Plus and other things I was doing to help pull me out of my flare was helping with just about everything except for the pressure in my head, which seemed to be growing to monstrous proportions.

A week goes by and I hear nothing. I call as agreed, to remind Dr. B and let him know I’ve had 2 more very brief and mild attacks of dystonia and my head pressure is unchanged. He informs me they’ve been playing office tag and he’ll try again. I decide to call Dr. M, world renowned head specialist and schedule an appointment myself. I am late for my checkup after all and I have less to do than my busy practitioner. They get me in within two weeks, almost unheard of.

And then what I thought was my IC began acting up:

Only it turns out it wasn’t my IC, but of course I don’t know that until the pain is completely out of control and when I wipe, the toilet paper comes away red with blood. Instead of calling the doctor and going in yet again, I decide to use the amoxicillin script the dentist gave me after my last pulled tooth that I never used and add some high dose vitamin C on for good measure.

I hear back from Dr. B a few days later and he tells me they want to stay the course with the baclofen for now and maybe I should go back to Topomax. In my head, I’m screaming, No! My mouth chooses to explain the hell I’ve finally escaped by weaning off of it, sounding much saner than I feel.

“It’s fine,” I end with. “I decided to go ahead and make an appointment since I was due for a checkup anyway. I’ll get it all worked out with him.”

More Bad Tidings at the Dentist

Before my appointment with Dr. M, I have to get through some more dental work. I’m angry about this dental work, as I get regular checkups and cleanings every 6 months and yet, I switch dentists and mysteriously I’ve developed three cavities all at once? What was my old dentist waiting for? For them to get bad enough that I’d have to pull that tooth to? What in the hell was my old dentist doing? Huffing laughing gas and drawing cartoons on my xrays? This isn’t the first problem I’ve had with my old dentist. After this latest, I’m strongly considering suing him.

My mouth is a crumbling jigsaw puzzle and I have no need for help from lazy or incompetent dentists to lose my teeth. On my right side, I have the very first molars on top and bottom, but the molars that belong next to them are long gone. On my left, I have only the top molars. Somehow I’ve managed to keep the rest, but it’s a battle I’ve been fighting for over a decade. When you have hypermobile teeth, gum disease is practically inevitable. Throw in my cracking, collagen deficient teeth and a 33 year love affair with cigarettes, and you have my mouth. When Dr. A drills my lower right molar for repair, he finds the decay has gone all the way to the root. The one tooth I depend on most to chew.

Dr. A stops to explain the situation and explains that they’ll pack it with some sort of material and put the filling over it, but there’s a chance that the nerve won’t tolerate it. In that case, all they can do is a root canal or extraction.I explain it will have to be an extraction, but hope against hope it will be okay because it’s all I have left to chew within the sides and Dr. A just explained to me why dentures would be torture for me.

On increasing neurological symptoms with high pressure head pain in one of a few very bad weeks for this trifecta zebra with EDS, MCAS, POTS, Dystonia, migraine, brain fog and more.

No such luck. The pain in this tooth is already way worse than the other tooth they fixed, but I’m determined to give it a chance, so I stick with it, eating (mostly unapproved) soft foods and going hungry far more often than I like. The pain starts waking me at night, despite copious use of advil and I cry every time I have to eat, drink or breathe through my mouth.

A week’s gone by. I phone the dentist to cry uncle. I explain everything to the receptionist, who in turn tells me Dr. A is on vacation and he left orders for me, but they’re for an endodontist.

“I can’t afford an endo. I have to do extraction.”

She tells me she can’t do anything. I have to have a referral, but only the doctor can write it. When I become upset, she tells me it’s “not her fault” and I should go to an urgent dental care. I hang up on her and her bad advice, telling myself I will apologize at my next visit for being rude.

There isn’t an urgent dentist for 35 miles and I can’t fathom what they’ll do for me since I’ve already been told it has to be extracted surgically, so I ignore the receptionist’s advice and call Dr. S, who handled my last extraction. The receptionist tells me neither Dr. S or my insurance require a referral, but Dr. S can’t consult until the 22nd, 3 weeks from now. I take the appointment anyway.

The Head Pain Specialist

A few days later at Dr. M’s, I stupidly walk into the elevator bank without my mask on and get hit with a wall of body spray so thick, I can hardly finish my breath. Slapping my mask on immediately, I’m an oxygen deprived mass of hives, urticaria and welts by the time I reach the doctor’s office:

Dr. M comes in not looking or behaving much like himself and I inquire about his health. “A cold,” he says and I balk momentarily, deciding he’s probably not a bad judge of whether or not he’s contagious, but regret having pulled my mask down.

We discuss my dystonic crisis and I tell him I was in a huge flare at the time.

“What type of flare?”

This causes me to pause and consider my answer. “MCAS, I guess, though it got everything going. I tried to take a long weekend to the upper peninsula.” I said, feeling the blood warm my face as he chuckled at my foolishness.

“Went well for you, didn’t it?”

“Yes, grand,” I laughed, squinting at the pain it caused. I filled him in with the highlights.

“What concerns me, is that I haven’t had one of these attacks in over a year and this one was just so long and brutal. The baclofen is doing its job, it seems, but I have other concerns. The pressure in my head is intense and only seems to keep growing. I get awful shooting pain straight from the top of my head sometimes when I’m upright, while others it hurts in the back or front, above my eyes, which frankly feel like they’re going to burst. Dr. B checked my ears and said they were clear, but they hurt. It feels like they’re going to burst sometimes and my hearing gets muffled and my vision goes blurry or dark.”

“So it’s getting worse?”

“Apparently so.”

“You know the resolution is probably a spinal tap. We’ve been discussing that. Is it time?”

“I think it’s time,” I responded, reluctant, yet resolute.

We discussed what we were hoping to achieve, risks and possible outcomes and I left his office with orders in hand, hardly believing I’d agreed to another risky operation.

Now that the pressure in my head is so great, I cannot be on my feet without being overwhelmed by dizziness and shooting pain. In fact, feeling lightheaded and fuzzy has become a permanent state that’s unrelieved in any position. Even sitting up isn’t possible and every time I begin working, I pay dearly because although I’m still working in a recliner, it’s my husband’s and it’s harder to stay in that partially reclined sweet spot that works so well for my head.

In addition, I’ve developed a pattern that looks suspiciously like sundowner’s despite being on Parasym Plus; by late afternoon my husband often has to tell me the same thing multiple times. I reshare things on social media because I have no recall of having shared them the first time. This could be in part that I’m not sleeping because of the pain, but the pattern is new and concerning.

When I scheduled my LP, the scheduler naturally told me no NSAIDS for 3 days prior. This wasn’t a big deal to me until I thought about the fact that I will be having my LP while this broken tooth is still in my head. A broken tooth that causes me the most pain when I’m flat on my back.

For my LP, I have to lay on my back, not moving except to go to the bathroom for at least 48 hours. It’s only 24 hours, typically but we zebras heal slow. Even an hour on my back has me writhing in pain and cursing my own existence. I’m not sure how I will make it through.

I went to the dentist, under the guise of filling the 3rd bad tooth:

Sharp instruments or no, we couldn’t come up with anything I could tolerate that Dr. A can prescribe. I have anaphylaxis with codeine and everything but hydromorphone and Demerol turn me into a spectacular fountain of bodily ick from every orifice. “I’m so sorry I can’t solve for tomorrow,” he said, “and it won’t last, but I could numb your jaw right now so you can at least get some rest.”

I took him up on his offer and cashed it in on a good night’s sleep.
When the procedure is through and I have come out on the other side of healing, I will write the post which describes it all from finish to end. Today, on the morning of my surgery, for which I must wait on pins and needles, I cannot dwell on them.

Exactly two weeks after the appointment with the head pain specialist, I am full to bursting with information on the lumbar puncture procedure, having read everything I could get my hands on and asking everyone I know to ask how they experienced what I’m about to. I’ve even written my goodbyes, just in case.

My angiogram caused great fear in me and I was convinced letting them strap me to that chair would be my last act. I don’t quite have that fear this time, but my feelings haven’t changed much. I am convinced that in a country where 250 people a day die to medical error, that I am forever one procedure away from death if my eroding soft tissues don’t kill me first.

Somehow I’ve made my peace with it. I don’t relish leaving this world behind, but I don’t really fear it, either, except that it is unknown to me. I simply cannot fathom existing in this pain-filled life any longer than I have to be. If I go, do not cry for me, but rejoice for me that my pain has ended.

Update: Yes, yes, you can call me a drama queen now that I’ve had my first uneventful LP. My next post on lumbar punctures, csf leaks and intracranial hypertension, including the details of my own experiences and new diagnoses, will be the topic of one of my upcoming posts, but I still have a ways to go before I know how my own story turns out. Just know the procedure went well and I’ll be sharing more soon. As always, thanks for reading, supporting and commenting!

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There's nothing quite like a high pressure headache due to IIH, Chiari Malformation and/or CSF leak, unless you add to it one of the most excruciating dental problems there are, a nice MCAS flare, and oh yes, let's throw in a UTI (bladder infection) while we're at it. Why not? I'm zebra strong and this is just another month in the life of a trifecta zebra with EDS, MCAS, POTS, Dystonia, Migraine, Fibromyalgia, ME/CFS, gastroparesis and others.