- CASE FILE
Cerebral Spinal Fluid Leak after having an Epidural Spinal Injection for lower back pain.
ABOUT THIS CASE FILE
I heard about this show recently and I just felt compelled to reach out and share my story. I have a Cerebral Spinal Fluid Leak. In a few article’s, it is said how rare a CSF Leak is. I do not believe they are so rare. I belong to a Spinal CSF Leak message board on Inspire.com. If it was not for the message board, I may not be here today to write to you. There are so many woman and men from around the world that are suffering and many are unable to get the help they need. Many Doctor’s do not recognize the signs and symptoms and brush them off. Others do not want to take the blame for a mistake or an accidental puncture.
In May of 2017, I suffered a radial tear at L4/L5 at work.
For about 3 weeks I was sent to a walk in clinic, they basically gave me muscle relaxers, steroids and pain meds. Finally they recommended an MRI, since I was not feeling much relief. The MRI showed a radial tear and annular disk bulging at L4 /L5. I knew it was not a muscle strain! Finally I get to see an Ortho, or so I thought.
I am now seeing how this crappy Workers Comp System works. The Ortho tells me that it is a muscle strain...but what about the MRI report? No big deal, it is a muscle strain. Here are more muscle relaxers, pain meds, a tens machine and lidocaine patches. The meds I will not take, they just make me feel loopy and do not help my pain. The other stuff does nothing for me either, 3 weeks of physical therapy was ordered and was basically a joke.
I got a one-time change of request for a new Dr.; he seemed a little more understanding. He still would not acknowledge the MRI results. He did offer to try an ESI (Epidural Steroid Injection) to see if it would help my pain. Do they give ESI'S for a muscle strain?
I had this procedure done on October 19, 2017. I figured I would try it once and see if it gave me some much needed relief. This proved to be an even bigger mistake! The procedure itself was unpleasant, but did not hurt too much. It took probably all of 10 minutes and then I was immediately told to slide off the table and stand up. I did not even have my pants pulled up all the way when they opened the door! There were at least three more victims waiting to be ushered back for their ESI procedures. As soon as my feet hit the ground I knew something was very wrong. I was in excruciating pain; I hobbled my way to a seat near the checkout counter. I could not stand up without feeling as though I was going to pass out and vomit. They gave me a cup of water and a candy to suck on. I was shaking so badly that I could barely hold the cup. They had told me I did not need anyone to drive me after the procedure. I am glad I did have someone. I finally made my way to the elevator and outside to wait for my ride, there is no way I could have driven home. I had tears streaming down my face from pain and still shaking, people asking me if I needed an ambulance. I assumed I had a bad reaction to the steroids that were injected; I felt terrible and ended up taking that Monday and Tuesday off. I then got an email suggesting that I was putting my job in jeopardy because I was missing work. I dragged myself to work the rest of that week and the following week. I only continued to get worse, the intense pain in my back from the injection started to fade, but I still had my regular back pain. In addition, I had a terrible headache (way worse than normal), tremendous pressure in my head, tremors, facial numbness, nausea, dizziness, blurred vision, sensitivity to lights and sounds and major brain fog. I felt like I had Parkinson’s and dementia at times. I was doing and forgetting strange things. I should not have been driving to work, let alone working! I called the On Call PA on a Saturday morning since things seemed to be getting worse. I mentioned the possibility of a CSF Leak and he said that it was possible and to go to the emergency room if I got worse. Well I did not want to go to the ER, so I waited until my follow up on Thursday and continued to go to work. At my follow up the PA talked to the Doctor and agreed that I had a CSF Leak and scheduled me to have a Blood patch procedure on that Monday 11/06/2017. They injected about 16ccs of my own blood and some fibrin glue in hopes of sealing the leak. Strange to me that the ESI procedure took about 10 min with 2 people but this procedure had to be done in a surgical office. I was there for probably 6 hours and had 5-6 people in the room with me while it was performed. My head felt better almost immediately, but now I had terrible pain on the left side of my back at the injection site. I had arranged to take the week off because I needed to be on bed rest for at least 3 days. By Friday I could still barely move around and be on my feet for more than 15-20 minutes at a time. I asked the Doctors office for a note for another week, so I could be on the safe side. My back pain from the injection site got better, but I could feel the pressure building back in my head and worried that the leak did not completely seal. I had hoped that it will heal on its own in time. My employer told me that I had missed too much work and could not return until I was released Full Duty. I had my follow up with the PA at my Doctor's office and they released me Full Duty (what a shock), even though I expressed concern that the leak had not completely sealed. The jerk actually said to me that "unless I have spinal fluid spraying out of my back, I don't have anything to worry about". That is not even possible! The Workers Comp system is a nightmare; these Doctors are paid to say you are fine even if you are not.
Since the previous follow up, I did get to see the Doctor. He however brushed off the possibility that I still have a leak. He tried to blame my symptoms on my chronic headaches. He also said that there is nothing else he can do for my back pain since the ESI did not help.
I tried to explain to him how I felt and all of my symptoms,when I have been upright for a while. I feel like I have brain damage, the pressure in my head causes some strange things. I still have most of the symptoms from before the blood patch. The headache is not as severe, and I suffered from chronic headaches prior so I am used to having headaches. The tremors are also not as severe, but they still come if I am up too long. I certainly do not have much of a life at this point. Work had already become more difficult with my back injury, but it became even harder if not nearly impossible. I had to try to get as flat as possible in my small car during my 30 minute lunch break to try to make it the rest of the day. I think I could have learned to live with the back pain, but this is HELL. I do know and remind myself every day, that there are people who are suffering with worse problems. Things could always be worse.
It is almost exactly two years since I had the ESI that caused my leak. I am afraid to try to be seen with my own insurance in fear that they will deny payment because it was caused by a Work Comp Doctor. I cannot afford to pay out of pocket, money is dwindling and I will have to sell my house early next year. I am still hopeful that things get better in time, but after two years I just do not think it will get any better. I have read so many peoples stories of ongoing suffering for years and even decades. Back in June of 2018, I finally had to quit my job after 18 years. I just could not function any longer and I knew that pushing myself was only making me worse. I have begged the Work Comp Doctor for help and even reached out to Dr. Linda Gray at Duke. Her and her staff has been very kind; they even wrote a letter for my Doctor and offered to arrange to speak with him. My Work Comp Doctor balked at the letter and said my symptoms are caused by something else.
One of the things I find most difficult, is that people don't understand. You look okay, so they don't seem to understand how you feel. The pain and all of the symptoms combined are just so debilitating. I would not wish this on my worst enemy.
Thank you for your time.