CSF leak

Posted by jennifer gibson on Monday, February 6, 2023
I had been in the hospital many times the last few years, more than 30 visits within three years, primarily due to severe headaches and vomiting. None of the emergency room doctors could pinpoint what was causing it, some thought it was due to migraines, others thought it was cervicogenic headaches from neck issues since i had compression at the C6-7 level. These headaches seemed more debilitating than migraines, they always came with other physical symptoms such as facial pain, sore neck, and severe vomiting for more than a day or two. I hated it, they would hit me fairly quickly, usually at night or I would wake up in the morning with it. I initially thought it was due to working on the computer for a long time or pushing myself in karate, practising the moves over and over. Never did it occur to me that one day it would all come crashing to a halt.

I had incorporated swimming once a week at a local senior’s community pool even though I wasn’t technically a senior. But they allowed it due to my physical issues with previous shoulder injuries and a spinal fusion. I chose swimming so that I could engage the core muscles and get stronger overall to support my back. I had a limitations due to the spinal fusion such as no twisting motions, no unnecessary bending over, nothing excessive, particularly contact sports. Running was out of the picture due to the impact on the spine and that was a big change for me. When I went back to karate in the spring after getting permission from my spinal surgeon, I discovered how much easier and pain free it was. Before the surgery, I was in agony and couldn’t even bend over at all or walk very far. After the surgery, I was amazed as to how much walking I could do and not be in any pain.

Until September when everything started to change. It started with my right leg going numb, then a sharp pain in the thigh which grew increasingly worse. Then one day, something strange happened, my right leg became really heavy and difficult while walking, it really slowed me down. After that, my legs started collapsing without any warning, I would be carrying a laundry basket when my legs would suddenly give out, or getting out of bed and they would collapse after taking a few steps. It was bizarre and I couldn’t figure out what was causing it. My spinal surgeon thought it was due to Piriformis Syndrome which was ruled out by two other doctors and I agreed, this didn’t seem right. My instincts were screaming at me that there was something very wrong.

Then everything changed late September while I was swimming. At first, my legs seemed to struggle in the water which was odd. It wasn’t until I got out of the pool and tried to walk that I realized there was something very wrong. My feet were slapping the floor and my legs felt heavy. That had never happened before and I was scared. By the time I got home, they weren’t functioning at all and completely collapsed. I had to call an ambulance to take me to the hospital. I had an MRI and it came back as normal, there didn’t seem to be any obvious signs of compression in the spine. I was admitted for pain management and kept vomiting throughout the week I was there. I had horrendous headaches, a sore neck that required ice packs and I couldn’t walk at all, I had to use crutches to get around. Whenever I did physio, it made my legs weaker and heavier, and the nausea as well as headaches got much worse. It didn’t make any sense. There were no other tests done except a consultation with surgeons at another hospital who said there was nothing they do. I was discharged a week later despite the fact I still couldn’t walk at all.

Two weeks later, I was getting sicker and felt much worse. My face went white from the pain. I did a zoom session with my nurse practitioner who immediately said that I looked terrible and should go back to the ER, I said no, I couldn’t stand the thought of sitting in a waiting for hours and be yelled at by the doctor for “wasting their time”.  I had a lot of bad experiences in the emergency room at two hospitals and didn’t want to go through that again. I was often in tears from the pain but also from not being able to walk and having no answers as to why this was happening to me. There was nothing logical about it. 

A few days later, I realized that I would not be able to manage this anymore, it was taking a huge toll on my heath, physically, emotionally and mentally. I needed to do something right away. I finally summoned enough courage to go the ER at a different hospital elsewhere which is where my spinal surgeon worked. I was admitted right away when the doctor realized that this was serious. He initially said I would stay there for a few days while they ran some tests and scans. That turned into a week, a month, then several more months. 

It turned out that this case was “extremely complex” and my doctors couldn’t figure out why I was not able to walk. They finally got a confirmation from a contrast MRI which revealed a potential CSF leak and Dural Ectasia which was a surprise. I had never heard of Dural Ectasia but I did suspect that I had a CSF leak since I matched so many of the symptoms. My doctors told me that the Dural Ectasia was likely a result of the spinal surgery I had back in March 2021 which caused a widening or ballooning of the spinal canal.That meant the level of the spinal fluid had changed and my body was struggling to adapt to it. The change in the spinal fluid was causing severe headaches that felt different, there was a strange sensation that felt like I was falling, pain between my shoulder blades, facial pain, radiating pain into the groin and thighs which was new. Getting that diagnosis made a lot of sense and I relieved to have an answer. But there was a problem, I had a team of doctors who agreed that we should try a blood patch but one of the doctors disagreed and nixed the idea. 

I was absolutely devastated by that sudden changed in their decision, and no one questioned the reasons behind it. I pleaded with my doctor about that and he said there was nothing he could do to sway that decision and referred me to a different surgeon. In the meantime, I had gotten severely ill several times, non-stop vomiting, debilitating headaches which required me to go back on the IV and injections to manage it. I had warned my doctors about that but they didn’t seem to understand until they witnessed it. I still couldn’t walk at all and needed a nurse to help me to the washroom. It was extremely difficult being a deaf patient in the hospital where everyone wore masks, sometimes double layers and face shields. At night, when I took out my hearing aids so I could sleep, I relied on using an ipad so the nurses could communicate with me by converting their speech to text so I could read what they were saying. It was a huge lifesaver for me and they learned a lot about dealing with deaf patients like me, 

Then I was suddenly transferred to Freeport Hospital to get physio which made things worse. Whenever my physiotherapist tried to get me to walk using a walker, my legs wouldn’t cooperate, they would shame like I had Parkinson’s Disease and refuse to take a step forwards, I had foot drop in both feet, they struggled to function and felt heavy like anvils. Every time I stood up and moved, my headaches and facial pain would get much worse. I struggled during physio but tried to push myself but my legs would continue to collapse unexpectedly. I kept telling my doctor that it kept making my headaches worse but she didn’t seem to understand what was going on. She did agree with the MRI, that I had the signs of a CSF leak and tried to get ahold of neurosurgeon to look at my case. Then I started vomiting for two days straight and felt absolutely horrible. She called for an ambulance to take me back to Grand River Hospital. I was seen very quickly, put back on an IV and injections again and admitted. It was the same cycle as before, primarily focused on pain management.

My neurosurgeon ordered a series of MRI’s with contrast, trying to determine where the CSF leak was. But he had a disagreement with the radiologist, and the anesthesiologist refused to do a blood patch citing concerns that it could cause more harm to the spine. By this point, I was not only frustrated, I was angry and felt deeply brayed by the medical community. It was nearly Christmas, I had been in the hospital since October, and placed in isolation due to COVID (again!). I was despondent, I felt emotionally drained, I was extremely tired and struggled to manage the severe pain I was in on a daily basis. There was a nurse who refused to cooperate with me, she would turn off the call button but refuse to help me to the bathroom which didn’t make any sense. If she had time to turn off the call button, then she certainly had time to help me. This was not a single occurrence, it happened several times after that. I stoped relying on the nurses and had to do everything myself, I couldn’t wait 45 minutes to go to the washroom, not with the spinal issues happening. Mentally, I felt very alone, especially during the holidays and it was much harder since I was in isolation for two weeks. 

I was really struggling with this, someone deliberately denied me the treatment that I needed months ago. I don’t know why this happened to me. One of my doctors told me that there weren’t enough resources or doctors to help my case, particularly at Grand River Hospital. I asked them several times to have me transferred to another hospital such as Toronto or Hamilton since they would be able to help me. None of this made any sense. Why wasn’t anyone helping me? 

It was always the same pattern, I would seem stable and able to have physio but then get worse with an agonizing headache which would progress to vomiting for a couple of days. It was unbearable and I hated it. All I could do was lie still in bed, hoping that it would go away but I always ended up back on IV for several days. 

I went online, did more research about CSF leaks, tried contacting the CEO of the hospital and I even had a disability advocate try to contact the CEO and patient relations on my behalf, nothing. I met several patients and doctors on Twitter, those patients had treatment with days of being admitted to their hospital, I was baffled, why didn’t we have that capability here? Then I got into a lively discussion with several doctors, some who were experts in their field, particularly CSF leaks and they recommended that I go down to Cedars Sinai in La for treatment. How the heck was I going to do that? I’m on ODSP and had no way of paying for that nor would I be able to physically manage the travelling. I would need to be on a stretcher or medical transport. The Mayo clinic was also mentioned but that would have been impossible for me in so many aspects. Then I spoke with Dr. Wouter Schievink, one of the world’s foremost expert on CSF leaks. He highly recommend Dr. Farb from Toronto. I thought this was great, a potential lead! I gave that information to my current doctor (I would get a new doctor every couple of weeks, I was moved to a different floor or bed frequently). It seemed promising and I really hoped that he would be successful. Sadly, that would not be the case. About a week later, he came by and said he didn’t have any luck in reaching him. I only had two choices now: go home or Long Term Care. I immediately said no to LTC, I knew that I didn’t belong there and chose to go home, I missed my cats and doing things my way, I hadn’t slept through the night in the last three months. 

I was taken home by a medical transport in a modified ambulance, they took the stretcher right into my living room. Dad was there, waiting for me. He had driven over three hours to get to my place so he could help. He had already brought a bath bench, wheelchair and a walker for me to use. The cats didn’t seem to remember me at first and I’d wondered if they had forgotten me? It turns out that I didn’t have to worry about that, they both climbed into bed and slept on my chest the first night. 

Tags: february  2023  hospital  csf  spinal   
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