myleakyspine

[myleakyspine]

“resilience is very different than being numb. Resilience means you experience, you feel, you fail, you hurt. You fall. But you keep going” - Yasmin Mogahed 

[myleakyspine]

Life Changes

I’ve lost my job due to this illness. Thankfully I fully qualify for disability through my workplace, so I was able to keep my health insurance. In 2 months I will hopefully be able to collect Long Term Disability payments. That has been something I’m incredibly thankful for and hoping for. However, losing my job drastically changes a lot of things. Firstly, it puts the burden on James to support two people with his income. I’ve been a conservative saver for most of my working years so I have quite a bit of savings, but as I’m sure you can imagine, healthcare costs are not cheap. I’ve spent thousands and thousands of dollars in just a few short months to have needles shoved in my arms and in my back and to have more stress than I could possibly have imagined. I’ve also recently realized how much it’s affecting my self-esteem that I cannot work or contribute to society or my life with James. 

Ever since high school, I’ve been an active volunteer in the communities in which I’ve lived, and then I became a RN right after graduating college. I’d like to think I’ve spent a significant amount of time working to help others. And now my daily life revolves around minimizing my pain and sadness. I struggle to feel valued because I’m not contributing to any sort of community or my family. I feel I’m costing my family sleep, money, stress, peace of mind, and happiness. 

Of course, no one makes me feel this way. My family and friends have been more supportive than I could have hoped for. My parents had James and me move in with them, and that has been another amazing blessing for innumerable reasons. All I’m trying to say is it’s hard being sick in the first place, and then even harder watching the people you love most- and who love you the most- struggle to go through this with you. Their lives have turned upside-down overnight as well. And as much as I’m endlessly thankful to have people to go through this with, I wish I could have protected them from this. 

I think I’ve done a pretty good job of maintaining perspective and gratefulness through most of this. Relatively speaking, I’m in a pretty good position. But I don’t want to make it seem like I’ve been happy and worry-free through any of this. I’ve felt more overwhelmed, stressed, lonely, worthless, frustrated, scared, confused, and angry than I ever thought possible. It’s hard to live in a body that feels like it’s working against you. I have a (hopefully) minor blood disorder, I had hip surgery last year, and now my spine is showing early degenerative disc disease and causing this leak. It’s hard to imagine ever returning to a healthy life because I just imagine the next illness is right around the corner. 

I think that’s been the hardest adjustment of all. I’m a planner. And we all think we have time. And the simple truth is we just don’t. We hear that all the time, in a thousand different ways. And yet, we somehow continue to get caught up in the rat-race and meaningless things. I’m facing the hard truth that my life may be different for the next few years, and potentially the rest of my life. 

My treatment options have a high chance of failure. I may need multiple treatments. If that’s the case, I will not be able to hold a typical job. I may have to remain on disability. I will not be able to travel, to go to Disney World, to drive, to go grocery shopping. I’m so limited by this leak that I can barely leave the house, and if I do, I have to use a wheelchair and limit my time to an hour upright. If I need to have surgery to remove the bone spur, I risk paralysis from the shoulders down and risk infection and other complications. The idea of a “normal” life feels so far away and dangerous to consider given the risks of my illness. 

I’m about to start my life with James, and what kind of life is he promising himself to? I have no idea if I’ll be healthy enough to raise kids, to experience life, to give him a life he deserves. He’s happy to be with me in whatever capacity, but can you imagine the guilt I carry knowing he’s entering this union with so much uncertainty? 

I used to worry that I was not a resilient person. I never faced any real challenges or trauma. I think I can put that worry aside now. I’m practicing calling myself resilient every day to remind myself that I am. I get up every day, change clothes, wash my face, and find what ways I can to make money. I still smile and laugh. I hug my family. I cry in the shower. I get angry and act meanly. But through it all, I am building resilience. 

[myleakyspine]

Myelogram #2

I can make this one short. I was feeling very calm and confident about my decision. I appreciated that my doctor wanted to be 100% certain about where my leak is before moving forward with anything more invasive. 

We rolled up to Mayo Clinic around 10:30am that Monday morning. Everything went well during check-in. 

My family was allowed back to my preop bay with me this time, so it was nice to have company while waiting. The room that my doctor needed for my second myelogram ended up being needed for a stroke victim, so my wait got extended a few hours. Ordinarily that probably would have been very anxiety-inducing for me, but I must have been so exhausted from the stress of the weekend that I was able to doze for a little while before the room was ready. 

This time, I asked my nurses to load me up with pain medicine BEFORE I went back. They and my doctor agreed that we needed to control my pain better this time around. 

I was so pleasantly surprised when they brought me to the room for this myelogram. It was huge! There was music playing and all the nurses were in a great mood. They introduced themselves, held my hand during the worst parts, and even asked me if I wanted to put a special song on instead of what was already playing. 

I also did not have to move at all for this test. Since this was under X-ray instead of CT, I didn’t have to go in and out of a CT machine. The table actually moved in the direction my doctor needed me to, so all I had to do was lie there and allow the table to move how my doctor saw fit. 

The lumbar puncture went better this time too. No flinching and no leg pain. 

I was only in the X-ray room for about 30 minutes, as compared to 90 minutes for the previous myelogram. I was so relieved and happy to be done!

My doctor came to see my family and me right away after the myelogram. He assured us he was “99.99999% positive, risk my license” on finding my leak site. He was thankful and happy we did this myelogram to confirm his suspicions. 

I had to lie flat for 30 minutes, use the restroom, and then I was allowed to leave with my family. 

We went back to our Airbnb to recover, all of us relieved I had made it through another test without major complications. 

[myleakyspine]

The game changer

My doctor called that afternoon like he promised. 

He had spoken to my neurologist and reviewed the images with her. They were 95% sure my leak is at the T1-T2 level of my spine. They could see a calcification on the front side of my disc between T1 and T2 that is piercing my dura mater and creating a hole to allow CSF to leave the enclosed space its supposed to be in. 

And although I was so happy to be certain I definitely have a CSF leak, my treatment options became horribly limited. 

Initially, my doctors had thought my leak was higher up in my spine in my neck. This would have allowed a neurosurgeon or a spine surgeon to operate through the front of my neck. The surgeon could reach the calcification easily from the front to remove it, as well as repair the hole in my dura mater with stitches. And although I didn’t want surgery, it seemed like a relatively manageable surgery. 

Unfortunately, this was now not the case. 

Because my leak is lower, at T1/T2, the leak site is behind my sternum. A surgeon cannot access the front of my spine through my sternum. Not to mention my heart and major blood vessels there as well. Now, you may be wondering, “why can’t a surgeon go through her back?” Well, because my leak is at the front of my spine, a surgeon would have to make an incision in my back, cut the vertebra, and manipulate my spinal cord to reach the front of my spine where the leak is. And not many surgeons are going to want to manipulate the spinal cord of an otherwise healthy 27 year old woman. The risk outweighs the benefit at this point. 

My doctor informed us of this reality, and then began offering his other treatments. He can do a targeted blood patch, targeted fibrin glue, or targeted DuraSeal. 

He advised us that my leak may complicate 2 out of those 3 options. When my CSF leaks out of the dura mater, it creates a large pool at the leak site. My doctor explained the blood patch and fibrin glue as this: blood and fibrin are not very viscous. CSF is extremely watery. If he were to inject blood or fibrin into that pool of CSF to try and get it to stick to my dura mater, it would be like injecting paint into water. The paint would quickly dissipate and may never find where it’s supposed to go. He therefore would have a hard time recommending those treatments. 

He informed us he is trialing a third option. There is a medical glue called DuraSeal that is typically used on top of sutures for cranial and spinal surgeries. My doctor has started injecting DuraSeal at leak sites because it is more viscous and has a higher probability of sticking when a CSF pool is present. The only caveat is he’s only tried this in 2 other patients. 

He could only give us his success rate on 2 other patients, and they had only received their treatment 2 months ahead of me. So, the long term results of this treatment are not available. However, what choices did I really have? We knew a surgeon would not operate on me until we tried less invasive treatments. And we knew before the myelogram that blood patches and fibrin glue have a less than 25% chance of working when a leak is caused by a calcification. Therefore, we were left with the DuraSeal option. 

When we expressed our choice to my doctor, he then informed us that he would like to do another myelogram to confirm my leak site. He explained that he was only 95% sure of my leak being at T1-T2, and if he’s going to be sticking a needle to my spine, he wanted to be 100% certain that’s where the leak is. 

This myelogram would be a little different than the one I just had, and he would be willing to squeeze me in that Monday since he knew we traveled from out of town to Jacksonville. We accepted. We immediately booked an Airbnb to stay in for the weekend since the hotel room was beginning to feel claustrophobic and cramped. 

Time to hurry up and wait again for another test. 

[myleakyspine]

CT Myelogram

August 11th, 2022 finally rolled around. My parents drove from Sarasota to Orlando to meet up with James and me. We headed to Jacksonville to get my afternoon blood work done at Mayo Clinic. That went off without a hitch, and we spent the night in a hotel near Mayo. 

The next morning, we woke up at 5:30 to get me to the hospital by 6. It was an incredibly sleepless night. I was so worried about the outcome of the myelogram. I had recently joined Facebook groups for fellow CSF leakers, and there were a few who admitted that myelograms didn’t show their leaks. I was terrified to undergo an invasive test, only to be told that they couldn’t find anything and I was back to square one. 

Checking in to preop was easy and smooth. My nurses were great and attentive. My interventional neuroradiologist came by to introduce himself, and I was incredibly impressed with him. He was patient, kind, and humble. He sat with me for 30 minutes discussing my case and the procedure. I appreciated him so much for that. 

After 2 hours, I was finally ready to go back. I had been given Tyenol and Zofran to help ward off any discomfort and nausea. I also had a bag of fluids running to keep my hydrated. With CSF leaks, hydration is very important. Keeping our pressure up helps keep our symptoms at bay. 

Now, I don’t know what I was expecting, but this procedure was not it. 

I was brought to a CT room, which is relatively small. And I have to say, it is so incredibly isolating and lonely being a patient undergoing testing. I was only wearing a pair of underwear and my hospital gown. Every staff member with me was wearing a lead apron and covered head to toe to protect them from the high volume of radiation I’d be receiving. They also couldn’t be in the room with me when the CT machine fired up, so they all had to retreat to a separate room with glass windows and a closed door to keep us separated. 

They helped me on to the CT table. I had to lie on my left side so my doctor could do a lumbar puncture. The positioning was awkward and took a very long time. I was hooked up to so many things I wasn’t able to move on my own. I had to have 4 people help me move. I went in and out of the CT machine more times than I can count. They were ensuring I was in an appropriate position for the lumbar puncture. 

When my position was correct, my doctor started the process for the lumbar puncture. That was relatively easy, but definitely uncomfortable. I winced at the lidocaine and I absolutely hated the sensation of a needle entering my back. There was a great deal more pressure than I was expecting. Not to mention, I then had to roll onto my stomach while the catheter was still in my back. I have to say, every inch of me was resistant to moving while I knew I had something lodged in my back. It was one of the stranger experiences I’ve had so far. 

Then began the long process of positioning me again. In and out of the CT machine. In and out again. And again. And again. Between scans, the staff where moving my body, giving me instructions, and stuffing pillows under my pelvis. My head had to be much lower than my lumbar puncture so the contrast my doctor was going to inject would flow up my spine towards my head. And that can only be accomplished with very uncomfortable positioning for the patient. I’m not going to lie- my face was absolutely smushed into the CT table. 

When my doctor was finally happy with the positioning, he met me at the CT table to inject the contrast into my spine. And oh boy, was I unprepared for the level of pain I was about to experience. 

He let me know he was starting the injection. The pressure I felt in my lower back was unbelievable. Even worse, my left leg start to twitch from the irritation of the catheter and extra pressure. The catheter sits in the nerve roots, so it can irritate your legs. I felt my quad muscles rippling and my leg shaking uncontrollably. I was trying so hard to stay still, and my leg would just not cooperate. 

My doctor was watching the contrast flow up my spine towards my head on two large screens above me. He told me I would start to feel some pressure in my head as the contrast reached my skull. Pressure is an understatement. I cannot even begin to describe the pain I felt. I could feel the contrast flow up my neck and circle around my head. And I lost words. I almost lost consciousness. I couldn’t speak. My doctor took a break to check on me, and I couldn’t answer him if I was okay. He asked, “is your pain at least a 5/10″ and I could only nod. He asked the nurse in the room to prepare a dose of IV fentanyl and give it to me. The edge came off when the fentanyl went in. 

Then he had to inject me again with contrast. This was quicker and less painful, but I still was struggling. The pain hit again and I was at a loss for words. They helped turn me to the side and sit up, and I swear, I almost threw up right then. The nausea was incredible. I sat there with tears in my eyes fighting the pain and nausea while strangers stared at me willing me to let them know I was okay. Thank goodness my doctor recognized my pain and fear and asked the nurse to prepare another dose of fentanyl. They helped me lie down and removed the needle from the lumbar puncture and allowed me to rest. My doctor told me he was pretty sure he saw what he needed to, but he had thousands of images from the many CT scans to look through before he wanted to give a definitive result. 

I was then taken back to recovery. I felt like shit. My nurse in recovery kept a close eye on me and brought me some ice water and saltines. I had to lie flat for 1 hour to prevent a new CSF leak from forming at the lumbar puncture site. 

My doctor stopped by again and said it looks like my leak is lower at T1-T2, but he still wanted to take some time to review the images and talk to my neurologist. He promised to call me later that day to discuss everything. 

My family was allowed back to my recovery bay. I used the restroom after lying flat for 1 hour, got dressed, and we headed back to the hotel. I had been at Mayo for about 5 hours, and the myelogram had taken nearly 90 minutes. I was so thankful to be leaving the hospital and looking forward to my doctor’s call. 

[myleakyspine]

Dr. Fermo’s phone call was not quite what we had expected. She informed us that after reviewing the rest of my spine MRIs and discussing with another radiologist, she did in fact think that my spinal leak is being caused by a bone spur. She thought it was in my neck at C5-C6. She stated the treatment would be surgical. The surgery is called an anterior decompression. The surgeon would enter the front of my neck, move my trachea and esophagus to the side, and then excise the bone spur and suture my dura. However, I would need further testing to confirm this pathology. If it was not a bone spur, and my leak was not at C5-C6, that would drastically change my treatment plan. It was imperative I have further testing to isolate the leak site and the cause of the leak. 

Therefore, she wrote an order for me to have a CT Myelogram at Mayo Clinic in Jacksonville. We got it scheduled fairly quickly for August 12, 2022. We booked a hotel and were ready to hurry up and wait for August 12, which at that point, was almost one month away. 

[myleakyspine]

There’s two types of CSF leaks: cranial and spinal. I have a spinal CSF leak. In more ways than one, I definitely prefer a spinal leak over a cranial leak. Cranial leaks carry a high risk for contracting meningitis. You almost always need some kind of surgery for a cranial leak to be healed. Spinal leaks don’t carry such risk. However, it seems that spinal leaks can cause many more symptoms for patients. The downward pressure from the lack of CSF causes severe headaches and neck pain. Not to mention the overall brain sag that results in nausea, dizziness, shakiness, confusion, memory loss, etc. In untreated cases, patients can develop serious complications such as subdural hematomas that can become an emergent and life-threatening situation.

We learned from my neurologist at Mayo Clinic that the veins in my brain are engorged. This can be part of what causes the headaches as well. To compensate for the lack of CSF bathing my brain, the venous system will engorge itself to fill that extra space. My pituitary gland is also swollen and enlarged, and my MRI brain showed that my brain is sinking on itself. A leaky spine and a sagging brain- lovely. 

My neurologist at Mayo is Dr. Fermo. She’s incredibly patient and kind. Even more so, I do believe she is exceptionally smart and well-trained. All of my doctors in Orlando called my MRIs “normal”. However, when Dr. Fermo received my images, she informed me that to the untrained eye, my MRIs may look normal. When she looked at them, she found clear evidence that I was suffering from intracranial hypotension (IH), the condition caused by a CSF leak. Intracranial hypotension means low pressure in the cranium. The loss of CSF is what’s causing the low pressure. She showed us my engorged veins, enlarged pituitary, and my reduced mamillopontine distance (evidence of brain sag). These three markers are characteristic enough to diagnose me with IH, and even more specifically, IH caused by CSF leak. 

She also looked at my cervical spine MRI and suggested that I had a pool of CSF around C5-C6. She mentioned she thought it was a pool which would have been caused by a bone spur, but she was convinced by a radiologist that was not the case. She wanted me to have 2 more MRIs of my thoracic and lumbar spine to compare, and then she would get back to me about a plan. The plan was likely going to be nontargeted epidural blood patches.

I went ahead and had the rest of my spine imaged 2 days later, and awaited her phone call. 

[myleakyspine]

Memorial Day Weekend

Memorial Day Weekend ‘21 was one of the best weekends of my life. My longtime love proposed to me while my best friend and sister looked on taking pictures. I felt my heart explode with joy and excitement, and a moment I had only dreamt of was coming true right around me. It was easily the happiest surreal moment of my life. We spent the next few days celebrating with friends, and it’s still one of the trips I’m fondest of. 

Memorial Day Weekend ‘22 was spent in the hospital. On May 23, 2022, I developed a strange headache and a stiff neck. Nothing I did could relieve the pain. I could not sit or stand. I remember trying to sit up and feeling like I was going to die. I felt like my brain was sinking against my skull and my neck was going to snap. I couldn’t eat or drink much at all because the nausea was so overpowering. 

I was eventually admitted to the hospital in Orlando after two ER visits. The second time I walked in the ER, it took everything in me to not collapse from the pain. Thankfully, the nurses and doctors recognized I had come back to the ER in worse condition, so they took me back to a room right away so I could lie down. That ended up being the key to my diagnosis. All my symptoms abated after a few minutes of lying flat. 

At the time of my admission, the doctors were concerned I had blood clots due to a new prescription I had started and an elevated D-Dimer blood level. My parents jumped in the car to meet us at the hospital as soon as they heard I was being admitted. James had never left my side. 

I was given a room pretty quickly on a neurology floor. Then we had to wait. I had to have 5 MRIs and a CT scan, and due to the length of time I would have to be in the MRI machine, I kept getting pushed off for more critical patients. Eventually, my nurses and doctors had called the MRI techs so often that they were able to take me the next day around 6:30pm. I geared up for 2.5 hours in the MRI machine. I listened to Hamilton in the special MRI headphones and pretended I was at the Broadway show. Thank goodness for that play. 

The next morning, we were relieved to be told that I did not have blood clots anywhere in my neck or brain. I also had a lung scan and an ultrasound of my legs to rule out clots there as well. All clear. 

My neurologists ended up diagnosing me with a CSF leak based on symptoms alone. All of my MRIs were “normal”, so the only thing they could imagine would be a CSF leak. The attending neurologist admitted he had only seen a CSF leak twice before. To this day, I’m still so thankful he believed that something so rare could have happened to me. I’ve come to learn from other CSF leakers that a diagnosis as quick as mine is exceptionally rare. I avoided so many unnecessary procedures and pain because that neurologist trusted me and was well-educated. 

I had constant IV fluids and two caffeine infusions. My symptoms had slightly improved, so they discharged me with instructions to have a blood patch the following week if my symptoms didn’t resolve. 

We made it home that Monday, and that’s when the research started.