Today was a roller coaster day. I woke up in a pretty positive mood this morning. However, once I got up and moving my headache started to return (though on a very minor scale in comparison to previous headaches). I went back to bed and dozed in and out until around 10:30 when some friends from church arrived and graciously provided us with some food, dessert, and fresh hand-picked strawberries. I sat up and visited with them for a short period noticing I felt groggy but my headache had disappeared.
By the time they left it was time to get ready for a follow-up visit with my neurosurgeon. We actually arrived on time this time! Things became even more positive when the receptionist informed me that I didn’t have to pay the customary $60 copay because all subsequent visits would be lumped under the same umbrella as the hospital and follow-up visits were. Shortly after we sat down we were called back by one of the nurses.
She briefly examined the lump on my head (where the pocket of fluid remains) before declaring that she was surprised I had stitches and not staples, putting some materials on the counter, and informing us she was going to get Dr. Zomorodi’s PA to take a look and remove the stitches.
Dr. Zomorodi’s PA arrived and also played with the lump on my head seeming surprised that it was there. He discussed the symptoms surrounding my headaches and then said he was going to have Dr. Zomorodi come have a look before he removed the stitches.
Dr. Zomorodi arrived and began playing with the lump which he described as a cone. He said that he had only seen this happen once before and it was odd because typically the cone at the top of the stitches dissolves first and the neck gets bigger as the CSF moves and absorbs into the body. My case was the exact opposite with the swelling going down on my neck and remaining constant at the top of my head. We talked for quite a while and he answered many of my questions. He then said he was going to go take a look at the CT scan and to drop by the office next door after we were done to chat with him.
At this time the PA began removing the stitches. I had been expecting something horrible given that my skin had started to grow overtop of the stitches. It wasn’t nearly as bad as I had expected. I felt some tugging and cutting motions but really only felt a little burning sensation once. Otherwise no pain or weird feelings as he remoed all of the stitches. After he was done we headed over to see Dr. Z. So here goes, let’s see if I can remember all of the details.
So first thing we learned is that I did indeed have a laminectomy. Dr. Z had told me before the surgery he was sure that he wouldn’t have to do a laminectomy based on the MRI but he couldn’t guarantee it if he got in there and saw something different. I just assumed he had not done it since there was no mention of it after I awoke in the ICU and he gave me the report of how the surgery went. However today he went over my CT scan showing me everything that had changed and said he did remove part of the C1 to make things wide enough for the CSF to flow properly and allow him to close and seal the incision.
But back to the headaches. Interestingly enough he thinks that caffeine will help immensely. He asked me if the headache changed or if there was anything I could do to make it better. When I explained that after laying down for 15 – 30 minutes it felt pretty good but anytime I moved, particularly if I sat or stood up, it started throbbing and you could often see my temples pulsing in rhythm with the throbbing. He nodded his head as I was describing this and informed me that it is all related. Apparently when I lay down the spinal fluid pools in one area. Then when I sit or stand up the blood all rushes to my head to try and disperse or relocate the CSF which increases my blood pressure hence the pulsing in my temples. This made sense since I also get a strong head rush if I bend over below the waist such as to pick something up from the floor. He said that he wanted to treat the problem rather than the symptoms so he prescribed me a new medicine to use instead of the Percoset. The new pill has a lower dose of narcotics (he called it a wimpy narcotic) but a high dose of caffeine. Supposedly the caffeine will cause the blood vessels to constrict which will prevent the pounding effect when my blood pressure rises preventing or lessening the headaches. I can’t remember the name of the medicine at this point but will post it once I pick it up. The interesting thing to note is that the brain itself doesn’t feel pain so apparently it compensates by tightening the neck and shoulder muscles which cause pain to notify you that something is wrong.
As far as the cone or pocket of fluid, he didn’t expect it to remain this large but he was relieved that they did him the favor of taking a contrast CT scan because he could verify that it was indeed just fluid and there was no infection present. He showed us on the CT where he had removed the section of bone so that my skull resembled a horseshoe with the bottom portion of the U that connects the left and right sides missing. Where that bone was missing you could very faintly see a dotted line connecting them where the dural patch was sewn in place. Then immediately behind that you could see the bulge or pocket of fluid.
His explanation of the fluid is that when they sew the patch into the dura it causes tiny perforations in the dura caused by the needle during the procedure. Until these perforations are healed the spinal fluid will leak out of the perforations. He also said that the patch and perforations acted as a one way exit allowed the spinal fluid to leak out but not allowing it back in. This explained the pocket of CSF. He said you can tell that the perforations in the dura had healed since the lump was not increasing or decreasing in size (meaning not only was it not letting the fluid back in the skull but was also no longer leaking). The other patient he had seen with this “problem” had the lump for 2 months so with a few people it just takes longer for the CSF to absorb back into the body and disappear. Thankfully he didn’t want to do anything radical such as trying to drain it. He basically said to just wait and watch to see if it goes down and call back in about 5 days to see how I am doing and to especially call if it starts to grow in size. Another option he mentioned is to wrap my head to put pressure on the cone to try and make it disperse or absorb into my body quicker.
After the appointment we went by Target pharmacy to see if the 2 prescriptions had been called in yet. Ironically enough, they had the 2 prescriptions waiting that Dr. Z’s assistant said she was going to call in. They tried to convince us that they had been received and filled last night but if so it was done after 5 pm (over 30 minutes after the office had closed). And another shocker, the 2 that were supposed to come in today from Dr. Z’s office were not there. Oh well, will take what I can get I suppose.
So long story short, it turned out to be a very informative and exciting day. Just a week ago I was having crippling headaches with no knowledge of what was causing them. I was starting to get scared that I wouldn’t be able to come off the pain medicines. And I was sleeping pretty much around the clock because of the doses of pain medicine I was taking to manage the pain.
Now I have hope for a brighter future. It is an immense relief to know what is causing the headaches so we know how to battle it and know that while this is not normal, it is not serious and there is a light at the end of the tunnel. Also with the new prescriptions I will not have the same side effects in the sense that I won’t be drowsy. I can go back to the normal routine after hospital release of sitting in bed playing around on the laptop trying to get some minor things I had been putting off done. And you can’t even imagine what a relief that is.