Living with a spinal CSF leak: making your home more accessible

This post was last updated on May 9, 2024.

Living with an active spinal CSF leak has been a big challenge in many ways, including the struggle of living independently while being so restricted from in mobility and upright time. This piece goes into how I modified my apartment for my disabilities to make it more of an accessible home, something I also touched on at the ‘Bridging the Gap between Patients and Providers‘ conference that took place at the University of Colorado Anschutz Medical Campus. The talk goes into the mental aspect of living with a chronic spinal CSF leak — how I got to a place of acceptance, and how hard it was to do so — but also covers some of the items in this article.

For those who are interested, the full talk is here:

As I said in the talk, while the tools below are helpful for my living with a chronic spinal CSF leak, I also wish I had known about them when I was recovering from my epidural blood patches. They would have made recovery smoother, and less daunting. Some of thge recommendations below are also helpful for people with back injuries or chronic pain, people who are recovering from surgeries unrelated to spinal leaks, and more.

Accessibility tips and tools for living with a spinal CSF leak

Prior to looking for solutions to my living challenges, I needed time to accept the chronic nature of my leak and to process the big life changes that having one brought about. Only then was I ready to start thinking about home hacks or tools.

Ultimately, while I did not want to see it at the beginning, these home changes for my disabilities gave me more freedom and autonomy, not less. The added ease with which I could manage living in my apartment then gifted me more energy to use my ‘brain juice’ for my business and for managing other aspects of my life.

What you see below is all from my own reading, thinking, and experimenting. I did consult with an occupational therapist locally after I put these tools into place, but they did not have anything new to add. If anyone reading has additional solutions or thoughts, I welcome them!

The tools below are based on the trial and error of several years of active leaking. Lifting anything over 5 pounds, stretching my arm out too far, opening a heavy drawer, bending even slightly at the waist, and more all adversely affected my uptime and ability to function. I would lose any progress I made in getting more functional, and be back in bed close to full time. With these tools that help mitigate against traction, I have been able to slowly improve my function over time.

Some patients have more range of motion than I do, and some have less. Hopefully, what I’ve put in place to support my day-to-day needs can also help you with yours.

The basics

These are items that I use every day, and make a big difference to my ability to comfortably live in my apartment.

Please note that many of the links below are Amazon affiliate links, and this site is a participant in the Amazon Services LLC Associates Program. If you purchase a product on Amazon from a link on this site, I will receive a percentage of its price as an affiliate commission.

A: Sippy cup. I did use a Platypus bladder from a hiking backpack at the beginning of my leak, but unfortunately it got very slimy inside very quickly. It was difficult to clean, so I found a sippy cup the easiest option. This is a toddler-sized one, and it’s easy to use, clean, and keep available and drink upside down as needed.
Where to find it: USA link, or Canada link

B: Grabber device. Or, as I call it, a ‘clomper’. It picks up things from the floor, it picks up things from the higher shelves, and it’s useful both leaking long term and after a leak patch or repair to avoid bending or twisting. I will say that my agile ‘monkey toes’ also are a great option; I often pick things up that way.

For things that don’t fit between my toes, or if I risk a paper cut, using the grabber is the solution. There are many grabber devices online, and frankly most are garbage. You want one with rubberized claws at the bottom and a good grip for the handle. This is the same brand, Vive, as the step I’ll share below. With the exception of a folding option for when I leave the house for care, I’ve stuck to this brand since 2017. I have several of them around the house.
Where to find it: USA link. Not available on Canada Amazon.

C: Nightstands from IKEA. I have these to lift my ‘garbage station’ in the kitchen, and to make my air purifier (as shown here) accessible for me to turn it on or off. They provide great access where I can’t bend to reach and are sturdy and helpful.
Where to find it: USA link ($14.99 USD) and Canada link ($17.98 CAD)

D: Squishmallows. Yes, I have a whole Squishmallow family. You do not need to procure a family, but I found that different sizes of these plushies work best for me. I did use a pillow to hug after my patches to keep my back straight while I slept, but I didn’t find that it was very comfortable. These stuffed animals are very comfortable and can be used to prop up your shoulder, your hips, or whatever is causing you some problems in terms of mobilizing it when you’re trying to sleep. For people with fibromyalgia, EDS, or chronic pain of any kind: this is a great, simple tool to help you sleep better.
Where to find it: Available just about everywhere, from pharmacies to Costco to online shopping like Amazon or toy stores.

Make sure to choose the right size for you, though! Left is Wanda the watermelon, a 16″ size Squish and too wide for me to hug in my sleep without tugging at my leak site. In contrast, Claudia the beet (right) is 12″ size — this is the size most leak patients seem to favour.

A: Pipe insulation. Despite looking like a pool noodle, this is actually pipe insulation with a precut opening on one side, great for propping up things that are difficult to open. This is the panel for the heating in my unit, which is difficult for me to get to. I have it on each side of that hinged door to keep it slightly ajar. I also cut pieces off of it, and put them on both sides of my kitchen drawers; see below for this.
Where to find it: USA link, but it’s much cheaper at any hardware store (e.g. Home Depot)

B: Erasable whiteboard. I recommend getting a whiteboard for anyone with chronic care needs, as it centralizes any help needed and is simple to use. I have home care that comes in twice a week to do food prep, help with cleaning, as well as other tasks that I can’t do. I have a standing “to do” list on one side, a grocery list at the bottom, and on the other side, a list for anything that crops up between visits. Even when family come and visit, they go straight to the whiteboard to see if there is anything quick that is available that they can do to help. 
Where to find it: available with or without erasable markers on Amazon or any home store, hardware store, or craft store.

C: Adhesive hook. These are inexpensive and rental-friendly (my place is a rental), and I use them to hang up items or, as I did here, to hook anything I need access to from the plug, which is quite low in my place.
Where to find it: USA link, Canada link (at double the price to the USA, as usual) or local craft or hardware stores.

D: Softest eyemask known to man: I am including this because it’s so ridiculously soft, and it doesn’t break the bank. I use it in the summer months when it gets light early, which wakes me from sleep at dawn.
Where to find it: USA link, or Canada link

E: Side-sleeper earphones: I often listen to relaxing music before bed, but I sleep on my side. I found these $10 earphones that are made from silicone for the most part, so they don’t press against your ear or head when lying on them.
Where to find it: USA link. Canada has them at a strange range of $40 CAD to $16 CAD, so it’s best to monitor the price. I initially got them for $10 CAD.

Making the bathroom more accessible

The challenges for the bathroom were accessing the tub since it’s higher than I wanted it to be, and the sink. The sink is quite deep, and I could not safely use the handle or reach the water spout without leaning too much.

A: Standing shower caddy. My tub has no place for me to put shampoos or soap, but hanging over the shower head was too high to reach. This tension pole did the trick, and shelves are adjustable for where you’d like to put them.
Where to find it: USA link, or Canada link (again, a ridiculous price difference)

B: Step to get into the bathtub. I can’t lift my leg too high to get into this soaker tub, or it pulls at my lumbar leak site. So I got a step with non-slide material on top and underneath, so it’s sturdy. Same brand as some of the other items in here, Vive.
Where to find it: USA link, or Canada link

C: Faucet water extender. It was hard to find one of these that wasn’t a rubber duck or an elephant, as they are mostly made for kids who can’t yet reach where the water comes out. I did end up finding a brand that patented an adult version and opted to buy from them even though the knockoffs were cheaper. In addition to this, I use a cup to spit into when brushing my teeth, so I do not lean forward when doing so.
Where to find it: USA link, or Canada (2x the price of the US version, of course, sigh)

D: Faucet handle extender. I initially bought one of these for my kitchen sink, but as you’ll see below—it didn’t work well. Thankfully, it was great for the bathroom!
Where to find it: on their site, USA link only (they ship to Canada). If you prefer a version with an elephant though, you can get it in Canada.

E: Giraffe leg shaver. I bought this years ago after my 4th round of blood patching. It’s made for pregnant women who can’t see/access their legs to shave them but works well for people who have disabilities that prevent them from reaching their legs as well. I rarely use it these days, but when I do, it’s a great tool. You attach the razor at the bottom, and the purple part extends lengthwise, and angles downward if you’d like.
Where to find it: USA link, or Canada link

F: Lotion applicator. It is astounding to think that I haven’t been able to reach my toes in 6 years, but here we are. Being in Canada, winters are cold and very dry, so this lotion applicator is handy. It’s the same brand as my grabber devices (Vive brand) and comes with 4 of those white pads so you can apply oil or lotion to your legs without bending and replace the pads as needed.
Where to find it: USA link only, but they will ship this to Canada

Making the kitchen more accessible

The big challenge for the kitchen was how to access items I needed to eat. The freezer has a very heavy drawer underneath the fridge, and the fridge itself is very large and has heavy doors. When I first moved in, my leak was better, and I could open the fridge with adhesive handles that I bought (since it came with no handles at all).

These days, however, I need an extra solution as the doors are now too difficult for me. The solution was a mini freezer and fridge, as well as other kitchen tools that make things more accessible and easier to ensure no BLT (bending, lifting, or twisting). Hopefully, I’ll be able to access the bigger fridge eventually, like I did before my leak got worse in January 2022.

A: Stand-alone small fridge. Filled with items from the bigger fridge that I can’t open presently, stocked up when people visit / home care comes to the apartment. It has condiments (put into tinier squeeze bottles), apples, snacks, salads for the week, etc. The table, for those interested, is the IKEA MELLTORP tabletop and frame.
Where to find it: Walmart, Amazon, Canadian Tire, Home Depot — all of these stores have options for a 1.7ct fridge.

B: Light switch access. IKEA light switch for the hanging light, which we zig-zagged down from the ceiling so that it was accessible right at my waist level. Sharing because I loved how it looked, and it was a nice way to make something accessible and pretty. I used cable wall holders for this, available at any hardware store, or Amazon.

C: Coccyx pillow. I try not to sit without this pillow because the tailbone pain is too much when I don’t use it. There are options that don’t have a full closed circle (U-shaped cushions), but I fell through them because I’m child-sized, so I opted for this one upon the recommendation of another leak patient. I use the Aylio Deluxe Donut Cushion (what a name!), and they also have one with two tailbone holes called the Socket Seat. The Socket Seat will not work for petite patients, though—it is too wide. This cushion is unfortunately one of the more expensive ones, but I’ve had it for 6 years now, and it’s in great shape. I use this in the car as well, to support my tailbone and take pressure off my spine, in combination with a softer lumbar pillow to go behind my back on the seat.
Where to find it: USA link, or for the cheaper U-shaped one by the same company, here. or in Canada a U-shaped one (different brand).

D: Countertop freezer. Since I can’t access the freezer drawer in my unit, I got a freezer to sit on the counter so that I could get to food as needed. It’s a basic 1.1 cubic feet “hotel room-sized” freezer and has served me well though it gurgles creepily sometimes.
Where to find it: USA link (Honeywell brand, as Arctic King isn’t avail). For Canada, I got it at Walmart, but it’s not available anymore, and there’s no reasonably-priced alternative here either.

E: Countertop oven. I was gifted this Breville countertop oven from someone in Ottawa who isn’t using it any longer. It’s perfect and has convection settings, toast settings, and bake as well as reheat/warm. If you’re a leak patient, you need to test out some of the countertop ovens out there, since many have either doors that are too heavy to open, or doors that have no hinge mechanism (and will crash into the tabletop if it’s on a workbench like this).
Where to find it: USA link, or Canada

F: Bror Workbench. This IKEA workbench was the best solution for my kitchen, something that could withstand a lot of weight for the freezer/oven, but also have some storage I could access. Very happy with it!
Where to find it: They’ve only got the black/plywood version in stock these days: Canada IKEA and USA IKEA.

G: Canvas bins, large: These bins are the perfect place to store items I can’t put elsewhere, but also allow me to pull them out by the handle using my grabber device for access. They’re also quite nice to look at.
Where to find it: USA link, or Canada link

H: Nordic Ware 1/8th trays. These eighth trays are the perfect size to fit in the convection countertop oven, and two fit side by side if inserted vertically. This allows me to batch cook even in the tiny oven.
Where to find it: Nordic Ware 1/8th trays, also available at Walmart Canada and Amazon US.

I: Hanging nets for bags. I got these to separate plastic bags for garbage, and the thinner ones for fruit and vegetables. The set came with two nets and two adhesive hooks.
Where to find it: USA link, or Canada link

A: Little adhesive wheels + a great knife and utensil holder. I got this utensil plus knife block after trying a few different ones. I needed one that would hold my knives for easy access, but also have room for the main items I used for cooking, like spatula, spoons, kitchen scissors, etc. This was exactly what I needed, and though it’s large, it holds everything in one place and I don’t need go through drawers to find it. The only issue is that it weighs a ton once it’s full. So, I got adhesive wheels that go underneath it, and it now moves around happily and easily.
Where to find the wheels: USA link, or Canada link
Where to find the knife block/utensil holder: USA link (different brand) or the one I got in Canada

B: Sink faucet extender. None of the faucet extenders worked for my kitchen sink because of the weird angle that the sink turned on and swivelled. The solution? Nestling the faucet handle in between three sets of disposable chopsticks, with elastic bands to keep them tight around the handle, and duct tape to top it all off. Is it pretty? No. Does it work? Perfectly MacGuyvered. I call it a win.

C: Adhesive fridge handles. Why someone thought a fridge with no handles was a good idea, I do not know. But I needed them. So I got a set of adhesive handles from Amazon and was thankfully able to put them at perfect “Jodi height” for opening. (My mum marvelled that the fridge was perfect for short people like us, but alas, it was me.)
Where to find it: USA link only, but it shipped to Canada.

A: Drawer-stoppers. My drawers in the kitchen are of the modern variety where there’s a ‘catch’ as the drawer closes that pulls it all the way in. I can see how, for some people, this is a good thing as you never have to fully close a drawer. For me, it’s an issue because to open the drawer, there’s a good bit of resistance. It was fine with my more functional 2022 self, but not now that the leak fully reopened. 

Solution: cut up pieces of pipe insulator and pop them in the sides of the drawer so they don’t fully close. This does mean that they are slightly ajar at all times, which may be annoying to look at. But beggars can’t be choosers and at least I can use them safely.

B: Lightweight pots and pans. I looked for pots and pans that were lightweight but ceramic and found this GreenLife brand with soft-grip handles on sale. It also came with an adorable tiny single egg frying pan, as well as utensils that are in the giant knife block above. I’m very happy with them so far!
Where to find it: USA link, or Canada link

The expensive stuff: automatic patio door opener and electric blinds

I realize this is a privilege to be able to afford these two items. My business that I built for passive income so that I could eat around the world, was able to shift into a business that I can update from bed. I realize that’s not everyone, but I did want to highlight these two things that are expensive, but solutions I found to access the patio and be able to close blinds.

A: An automatic patio door opener. This device is called the AutoSlide. You must drill the track into the top of the patio door, and install the device onto the ceiling. Thanks to the care and help of my brother’s FIL, I was able to get this up and running with minimal issues; he installed it for me, and it was more complicated than the company led me to believe it would be! Grateful for the help, as this device is the only way that I can access my patio door, or open it for some air in the living room.

Mine is the ‘Elite’ version because my patio door was so heavy it needed a bigger motor. Their regular version can handle up to 12 pounds of drag force, whereas the Elite can handle up to 55 pounds of drag force. My door is 20 pounds of drag force; I bought a fish scale to test out how heavy it is. 
Where to find it: You can order from AutoSlide directly, though I purchased mine from a company called Gentleman Doors as they were located near someone who was coming to Canada to visit, and it could be picked up in person.

B: Electric blinds. The blinds in my unit have a pulley system where you need to crank them over and over to open and close them. This was fine in the bedroom, but in the longer/larger patio area, it was far too heavy for me to use. I got these electric blinds at Blinds to Go in Canada, and they run on a rechargeable battery that only needs to be charged once per year. As I hope to stay here for several years, they were a good investment in day-to-day living with a leak.

Making the living room more accessible

The biggest issue with my living room was a couch that I could use. A bench cushion is what I wanted — a cushion with no breaks between it — and a couch high enough to easily get on and out of. Unfortunately, most bench cushion couches are built quite low to the ground, so I had to find a solution for me to use it safely.

A: Bench seat sofas. These kinds of sofas are trendy these days, and there are options from the budget (IKEA option here) to expensive (Crate and Barrel bench seat sofas here), and lots in between.

B: Couch risers. As mentioned, the bench cushion sofa I have (a friend gave it to me; it’s an old IKEA sofa) was way too low. The solution: I found these risers on Amazon. I stacked two of them on each leg of the couch, and presto—I have a couch I can use. On my sofa, the legs are actually shaped like fairly large Ls. If you need to raise your couch, a smaller riser may work for you; this was the only one that fit the L for me. You will be able to find ones that are a lot more delicate if the legs of your couch are smaller.
Where to find it: USA link, or Canada link

Making the home office more accessible

My home office is a windowless den that I put a standing desk and shelving in. Putting together a system for working when my leak allowed was important since I still run my business from (mostly) bed. This is my setup.

A: IKEA Kallax bookshelf. I placed it vertically so I can easily access two rows.

B: ALEX storage shelves. I found this navy ALEX on Facebook marketplace. It’s no longer sold in this colour but it’s available in white or a lighter blue, or brown-black.

C: Canon Pixma TR150. It’s frustrating that the only small printers that are accessible are the expensive ones! Still, this Canon was a good investment as it’s very easy to move around, comes with a battery pack if you can’t plug it in, and doesn’t guzzle ink. There were way cheaper printers out there, but I needed one I could make do with myself. This was the one that worked best.
Where to find it: USA link, or Canada link

D: IKEA KVISSLE Letter Sorte. It fits into the Kallax and makes it easy for me to store papers, notebooks, or other items I need access to frequently. It also gave me more space to work with in the shelf that I would normally be able to reach.
Where to find it: IKEA link

E: Standing desk from IKEA. Many patients use lay-flat tables that are adjustable instead of a standing desk, but I found it was too painful for me when I did; typing would increase my nerve pain and traction on my spine. So I use a standing desk instead. There are different widths and lengths available, and I opted for an electric option instead of a hand-crank for ease of use with a spinal CSF leak.
Where to find it: Standing desk IKEA landing page here.

F: SAD Lamp since my office nook has no windows. The times I can work are first thing in the morning since that’s when my leak is at its best symptom-wise. So no Vitamin D here; my office is a ‘nook’ more than a room, and without a window. I turn on this SAD lamp in the morning when I do have the uptime to work, and use a Verilux Happy Light, with LED lights and adjustable timer and light strength. This one is called the Lumi Plus. I’ve bought these for family members too, and think they’re great.
Where to find it: USA link, or Canada, though any Verilux product would work well if you don’t care about the timer like I do.

G: Under-desk adhesive drawers. Easy access to pens, calculator, and other items I’d use often.
Where to find it: USA link, or Canada link

J: Fatigue mat for standing desk. A must for standing long periods of time, especially after long bed rest. I got what felt like shin splints from standing too long at first until I got this mat. Hard to believe! But deconditioning does a lot to the body.
Where to find it: USA link, or Canada link

I: Bins bins bins! I have bins like this throughout my apartment, and they work well to keep items I need quick access to available but not cluttered. This is from a different company than the bigger bins in the kitchen, and these come in a pack of 6 with complimentary patterns.
Where to find it: USA link or Canada link

A few odds and ends

A few additional items that I wanted to mention.

On the left: Outdoor step with holes for water to drain. Similar to the bathroom step, and the one on the inside of the patio, but this one is made for outdoors specifically.
Where to find it: USA link, or Canada link (much more expensive than USA)

On the right: Smaller clothes dressers. One thing I didn’t think of with my furniture was how heavy drawers are to open for a larger armoire or dresser, especially with no ball-glides. My solution was two thinner IKEA dressers that I picked up on Facebook Marketplace second-hand. I bought drawer liner and taped it into the front of the drawers with painter’s tape so it looks nicer, and set them side by side. Easy access, and lightweight to open and close.

Not pictured: mattress selection. Everyone is different when it comes to mattress and comfort, but for spine support I have opted for a mattress with a density of coils (making it more supportive and harder), but with a softer pillow-top on it. This means my spine is supported but also my hips aren’t too sore lying on it. I find memory foam mattresses are far too painful to get in and out of with my leak.

On the left: An iPhone stand that works with PopSockets: I use my phone a lot in bed, and that includes writing posts for my Patreon or social media, editing photos, and reading the articles that go into my newsletter. I found a good way to help mitigate against repetitive strain injuries for my fingers and hand is to use a flexible stand that can hold the phone and be used in a myriad of ways. When using a tablet to take Zoom calls or the like—such as the Q&A for this conference—I also put this stand on its side, and it props up my tablet. It was a great find!
Where to find it: USA link, and Canada link (for once, not priced egregiously in Canada!)

On the right: Hands-free shoes: It was a fellow leak patient, Elle, who first told me about Kizik shoes. I have used them ever since. Made with patented technology that allow for hands-free use, these sneakers come in different styles and colours, and are available in kids, women, and men’s options. A note that their newer models aren’t as good for my spinal CSF leak because the heel drop is higher; I find the Lima model to be the most comfortable, though my shoes are their Cairo model that has since been discontinued.

Once you tie the laces on Kiziks the first time, you simply step into the shoes thereafter. To get out, you use your other foot to hold the base steady and slowly pull out of the shoe. They’re excellent for people with disabilities, for pregnancy, for seniors, and generally for those who hate having to crouch to get their shoes on and off.
Where to find it: On their website, Kizik.com. Using this link gets you $20 off (it also gives me $20 off, but I don’t see myself getting any more shoes as I have several pair!)

Services that I’ve used

I also wanted to share a few services that I’ve found helpful over the years that have been necessary for personal care or generally maintaining a level of autonomy and being able to live alone.

• Mobile hairdresser: many of us cannot physically go to a salon, let alone lay back in the sinks often used to wash hair. I’ve availed myself of a tool that seniors use, which is a mobile hairdresser. I wash my hair right before they arrive, and they cut it standing up. This is doable because I’m short, but if you’re taller, you can use the coccyx pillow above and sit down. After the cut, a quick sweep and vacuum takes the hair away, and you’ve got a new cut in the comfort of your home.
• Mobile footcare: same as with hair care, mobile foot nurses or pedicurists are a common service for seniors, and I use a foot care nurse to cut my toenails and prevent in-growth. She comes every two months. My family used to cut my toenails, but now that I am living alone, I had to find a different solution.
• Home care: I needed to find a way to support the increased disabilities when my leak reopened in January. Prior to that, I was living alone for a few months with once-a-week visit from my family or friends. I also wanted to find a way not to lean on them as much, and instead have a system in place to try and survive autonomously. As with the AutoSlide and the electric blinds, I’m fortunate that my business (the Patreon and my celiac cards, primarily!) supports this expense.

My spinal CSF leak story in brief

In August 2017, a doctor performed a lumbar puncture (LP) to rule out conditions he was concerned I had. At the time, I was living in Oaxaca, Mexico, but the LP was performed in the United States, where I was housesitting for a friend.

Within hours, I was unable to walk. Within days, I was unable to sit up or stand at all and had burning pain along my spine, dizziness, nausea, and word-finding difficulties. My symptoms went far beyond a mere headache and felt very scary. I felt very alone, especially given family members or friends who got lumbar punctures had no complications.

My LP was done with 18 gauge cutting needles and necessitated multiple attempts. It was performed without guidance. In the years since, I have learned (1) that this is a large needle size for a LP done on an average-sized adult, let alone for someone as ‘child-sized’ as I am; (2) that atraumatic needles, instead of cutting needles, could have reduced the likelihood of a spinal CSF leak, and (3) that having the procedure done under guidance could have helped the procedure go more smoothly, and pinpoint exactly where the needle went, thus helping with repairs.

I wish I knew then what I know now, and wish that the practitioners who performed this procedure on me had, at minimum, considered a smaller gauge, atraumatic needle. At least I can share what I’ve learned in the hopes it helps others.

Unable to get care locally after my LP, I was able to self-refer to a specialist centre in the United States, and had four rounds of blood and fibrin glue patching. I was fortunate that my travel medical insurance covered the bulk of the procedures, and that a GoFundMe started by friends helped with the expenses of hotels, apartments, food, and transportation.

Each round of blood patching included transforaminal patching to target a potential ventral leak. Two weeks after my 2nd patching round, at the time the product insert for the fibrin said it was beginning to dissolve, I got hives on my knees and elbows. The same thing happened after round 3. I never had hives before, but after getting sick in 2013, I found I had new environmental and medical triggers I previously had no issue with, like an anaphylactic reaction to wasp stings that prior were not a problem for me.

I mention this because, during the 4th round of patching, I went into anaphylaxis – the suspect being the fibrin glue – and ended up needing an epinephrine shot on the table after IV steroids didn’t stop the reaction.

Despite this, my 4th patch did seal me. Over 6 weeks, my “low pressure” symptoms went away when I was upright, this after being completely bedbound for months since my LP. Eventually, I could be up all day, carefully walking long distances and in mild rebound intracranial hypertension that was getting better over time and controlled by low doses of methazolamide.

At 8 months, unfortunately, I re-leaked by sitting down the ‘wrong’ way (whatever that means for my body!). All of my positional symptoms, as well as the nerve pain, executive function problems, and burning, came back.

Since that 4th patch, I have gone into anaphylaxis many times, including to previously innocuous exposures like pollen and snow mould. I was able to see a specialist for mast cell testing, and my labs confirmed that I have mast cell activation syndrome (MCAS). MCAS, plus the fact that repairs don’t seem to hold for me, my inability to get fibrin glue safely, the fact that we don’t have a precise leak site(s), and some other complicating factors have together led me to hold off on further treatment for now.

How functional am I?

When I first releaked in 2018, I had almost no uptime and was eating lying flat. After prolonged bedrest, I was slowly able to make some progress and start gentle walks so I could stave off too much deconditioning, and eventually move out on my own with some of these home changes above.

Last year, I had progressed to about 7-8 hours of non-consecutive uptime, but in January, I slipped and reopened things all over again.

Presently, I’m getting about 3-4 hours upright a day, non-consecutively, which includes personal care, food, and trying to get in a bit of work in the morning when my leak is at its best.

Getting to acceptance

Living with a leak is not easy. As I mentioned in a CNN piece I wrote about my spinal CSF leak, I would not have been able to stay afloat without grief therapy and a lot of work on mental mindset. Objectively, this is a very limited existence and coping with the loss of my identity, mobility, and life I worked so hard to build was not easy.

I will be writing a piece about how to get through terrible times, but for now I want to add that getting to acceptance isn’t as easy as people suggest on social media. And as I said in my November 11 talk, accepting the cards you’ve been dealt also does not mean you’re giving up. Rather, it involves holding those two birds in one hand: not fighting against the facts, while also keeping hope and looking at solutions for the future.

I do have hope that the field will evolve for a safe way to get me sealed eventually.

For now, however, I’m living with my spinal CSF leak as best I can.

A brief 2024 update

I moved apartments in 2024, and it was the first time doing so with all of these accommodations that had to move along with me. Having set up the same items in my new unit, I can safely say that they are a system that works even in transition. I was curious how the modifications would hold up in a new space, and they’ve all done great with the exception of my kitchen table and chairs, for which there is no room.