Saturday, December 5, 2009

Spontaneous Dural Tear and Cerebral Spinal Fluid Leak

I'm sorry that I left all 6 of y'all hanging.

I can honestly say that the last 12 days have been the craziest/scariest of my life, with the last 2 being the worst.

If you don't know what I am talking about, scroll down to the post before this one.

The last thing I had posted was that we went for the MRI and found out it had been moved to Thursday. So Thursday morning we go and they do the MRI with and without contrast agent (they give the contrast agent through an IV so they can see different things) and I was laying in the machine for about 70 minutes. I was thrilled that I didn't have any bad reaction to the agent and when we got home I felt ok because I had taken that medicine with the codeine and caffeine and stuff in it. Mom and I started decorating my house for Christmas.

About 3:00pm I got a call from my PCP (primary care phys.) and I knew something was wrong when he asked if Justin was there with me. He told me that the radiologist and neurologist had looked at the film from the MRI and there was some abnormalities. He said I had to go immediately to the ER because they thought I had a dural venous sinus thrombosis and a possible spontaneous dural tear with CSF leak. I didn't know what any of that really meant except that thrombosis means "clot" and I knew that a clot anywhere in my brain would be bad. I called Justin at work and told him and he came straight home. We got some stuff together because we didn't know how long I would be there and then went straight to Emory ER. I was admitted pretty quickly and got to my bed where we stayed for 7 hours - H6. It wasn't a room because they were busy so I got a "hallway" bed - H6. I felt like I was on some tv show. :) Zach came and stayed with us the whole time.

They scheduled a MRV (Magnetic Resonance Venograph) and eventually I went and did that (basically like an MRI but way more powerful and with special software that makes them able to see just blood stuff like veins). While we were waiting for the results of the MRV, Neurology came and made me do all kinds of hand/eye tests (close your eyes and touch your nose, follow my finger with your eyes...etc.). I passed all of those. They finally came and told us that there was NOT a clot. That was excellent news, but it also meant that we didn't really know what was causing the postural headaches. After waiting another hour or so, they came and said that they were going to do a blood patch because they thought I had a dural tear that was most likely caused my my epidural when I had Silas. They gave me the option of staying overnight in Observation and having the procedure done at noon on Friday or going home and coming back to have it done on Friday. Dr. Keady (the ER Attending) said I wasn't in any danger if I went home, so we chose to do that so I could sleep in my own bed and see Silas.

We slept well and were planning to sleep until 10am (mom was up with Silas) , but at 7:51am Anesthesiology called (from the hospital - they were who was supposed to do the blood patch) and said that there had been some confusion on their end as to when I had my epidural. They thought it was 10 days ago, not 4 1/2 months ago so they were calling to tell me that they would NOT be doing a blood patch because there was no way it was caused by my epidural. Dural tears happen all the time but always within 24ish hours of receiving the epidural.

Well that phone called really irritated me because we STILL didn't know what was wrong with me and the headaches were STILL there. We decided that we were going back to Emory's ER and that we weren't leaving until something had been done to at least try and fix this problem. We went back, waited for 1 1/2+ hours in the waiting room and then finally got taken to a CDU room (Critical Decision Unit). The good thing was the Dr. Keady who had seen me Thursday night saw my chart pulled again on Friday and started to get the ball rolling on my case. I got my 4th IV of the week (my poor arms are SICK of being poked!) and settled in for some rest while we waited to hear what they wanted to do with me.

Very long story short, after several teams of doctor's pow-wowed about my strange case, it was determined that there were enough signs pointing to a spontaneous dural tear to warrant a blood patch. Here's what they think happened: When you get an epidural there is a tiny hole put in your dural (the membrane that holds your CSF-Cerebral Spinal Fluid- where it is supposed to be) but it usually heals on it's own and doesn't cause any problems. It is extremely rare to have a spontaneous tear like I did. Because of the rarity of a spontaneous tear and because with a spontaneous tear you don't know where it is, it took a while for them to decide that the benefits outweighed the risks of doing the blood patch. Normally they would just go right back into the same place where they had just given the epidural and do the patch there. With mine they decided to do a CT Guided Blood Patch and still do it in my epidural space with the hope that THAT is wear the tear was. The chances that the tear was there was pretty good because the dural could have been a little weaker there from the epidural. There is a test that you can do to try to find where a tear is and it is called a CT Myleogram. They take dye and inject it into your CSF - putting another hole in the dural - with the hopes that when they do the scan they can see where the leak is because dye is outside of where it should be. They decided not to do that with me because they were fairly certain that the tear would be near my epidural site and didn't want to add another hole to something that was already leaking. That made sense to me - plus it meant only having to have ONE needle shoved into my back verses two. :)

So - Neuroradiology did a CT Guided Blood Patch (anesthesiology had nothing to do with any of it). They laid me on my stomach on the CT Scanner, numbed the site with a local anesthetic, put a needle into my epidural site (L3, L4) , took multiple scans to make sure it was in the right place, and then took blood from my arm, mixed it with a little contrast agent, and injected it through the needle into the space. The most they could put in was 20ccs and they got 18ccs in so they were very pleased. The blood coagulates (clots) and acts as a patch for the tear. Fascinating stuff. Once I got over the fear of having a needle stuck in my back (when they explained that it would be just like my epidural that was nothing at all), I was just completely fascinated by the whole procedure. I made them tell me exactly what was going on at all times - every time they moved the needle, every time they had to go around a little piece of bone (that wasn't super comfortable), every everything. I asked if they had a mirror that they could give me so I could watch what was going on, but sadly, they did not. There were 6 doctor's in the room during the procedure and a bunch more (probably residents and interns) watching the whole thing through the window. Everyone was so interested because it is such a rare thing (at least that is what they told me). They told me that they wished everyone was as interested as me because most people just say "tell me when it is over" and don't want to know anything. They did crack me up at one point because it was all doctor's - no nurses- and they weren't sure what to flush my IV with after they took the blood. I told them what to do (flush with sodium chloride, aka saline) and I knew I was right since I had had 4 IVs in less than a week. They laughed and then did it. :)

I had to lay on my back for an hour after the procedure and then Dr. Saindane (Neuroradiologist and Assistant Professor of Neuroradiology at Emory) came and got me up and made me walk down the hall and made sure everything was ok. Then they discharged me.

The headaches were being caused by low intracranial pressure which is caused by low CSF. That is why when I stood up they were unbearable but when I laid down they went away.

I am very happy to report that I have not had a headache since BEFORE the Blood Patch. The site where they did the procedure is VERY achy and sore, but that is normal and will last a couple of days. I am still taking it very easy, but am confident that the blood did it's job and patched the tear.

I will be going to Emory for any future hospital needs, and if you are in the Atlanta area I suggest you do too. Both experiences (in the ED and CDU) were wonderful. Everyone was extremely helpful and friendly and they have the best doctors around. Dr. Saindane and his team of neuroradiologist were fantastic and they made a very scary situation and procedure bearable and interesting.

Thank you to everyone who has been praying for me and my family. God is good. :)

I hope this post made sense and that I explained everything well. Feel free to comment with questions if you need to do so. :)

5 comments:

  1. Wow... that all sounds pretty crazy! Thank God things got figured out!

    ReplyDelete
  2. I am so glad to hear that you are doing better! I can't imagine how scared you were. How is Silas handling everything? I know you were worried about bfing him....have you been able to start back? God is good! I'm so happy you are headache free! Take it easy and make that sweet hubby of yours take care of ya! :)

    ReplyDelete
  3. Praise the Lord for physician's who know what they are doing. I am so thankful you are ok and feeling better. Love ya.

    ReplyDelete
  4. Steph, I am so thrilled that you are better. We have been praying all week and are delighted to see that God has proven Himself strong in His child, once again! Get plenty of rest! Love you!

    ReplyDelete
  5. What a great update! Thanks for filling us in - glad you're better, Friend.

    ReplyDelete

You know what to do!

If you ask a question in a comment I will answer with a comment so keep an eye out here. :)