So life has been hectic since my last post so put on your seat belt and hold on.
Spinal Tap
The bump on the back of my head was still alive and kicking at my follow up with the neurosurgeon. The PA had previously told us that I had a CSF leak and it would need surgery to repair it. So I was surprised when we arrived at the follow up and the neurosurgeon said there were things we could try to repair the leak without mentioning surgery. I enthusiastically replied that I was willing to try anything if it prevented us from having surgery. Unfortunately that something involved a spinal tap of which I was terrified based on the horror stories I had heard. The theory was that he was going to do a spinal tap and draw some CSF off. This would create low pressure which would cause the bump to go away. Then my head would be wrapped tightly for two days allowing scar tissue to form which would seal the leak. Well, after getting into a nice uncomforable position that required help for me to hold, the digging began. After what seemed like forever and several failed attempts he gave up saying he didn’t want to torture me (too late). He signed me up to come back the following day to have it done again with radiology with the hope that things would go more smoothly since they would be able to see what they were doing. So the next day we get there and get the party started. Let me tell you it is not a good feeling when the radiologist says “I have pulled 20 ccs many times. I think I have even pulled 25 ccs a couple of times. I don’t think I have ever pulled 30 ccs, that’s a lot.” Then they go to town and it is the same situation all over again. Lots of agony and no love. Then they conclude there must be some sort of blockage that they can’t see and decide to go lower and try L3-L4 instead. They must have decided to dose me up good so they can go for it because they shot some more Lidocaine in there before trying and it didn’t just burn, felt like my back is on fire. It was totally worth it though because they hit the spot immediately like magic and I didn’t feel a thing. I was even leaning up joking with the radiologists and a trainee they were instructing. Apparently they struck gold because the radiologist exclaimed that I had high pressure and he could now understand why they ordered 30 ccs be drawn. I overheard him telling the trainee that the CSF should be clear and was a little bit yellow and that they send it off to the lab for testing as a standard practice. After asking about it he assured me that they would call if anything was wrong. They wheeled me off to recovery to lie still on my back and be monitored for several hours. I thought I recognized the song playing in the background and asked the nurse what radio station was playing. She told me it was K-Love and we had a long conversation about our favorite Christian music and artists. Then with several instructions about laying down flat, then elevating, etc. I was pushed out in a wheelchair and released into the wild.
Head Wrap
So I got to play partial mummy for several days to try and get rid of my bump and seal the leak. Everybody kept saying it would be uncomfortable and may cause headaches but it really wasn’t bad. I might start wearing it all the time as a fashion statement and start a new trend. Except I won’t tuck the tips of my ears underneath the wrap because that is frustrating as nobody’s business. Unfortunately my bump is infatuated and totally in love with me because when we pulled the wrap off it was there waiting to say hello. Epic fail!
No More Drugs
At first I felt like I was not doing so well because I was still taking the narcotics and muscle relaxers for pain at 4 weeks out. After my follow up I felt much better when the doctor told me that people took the medicine for an average of 4 – 6 weeks. However, I had already severely scaled back by only taking half of my usual dose three times a day (instead of around the clock every 6 hours). A couple of days later I completely stopped taking the narcotics but kept taking the muscle relaxer. A couple days after that I stopped the muscle relaxer and haven’t looked back. I now just take motrin whenever the headaches come and that seems to work.
Stupid Headaches
The headaches have come back 2 times but thankfully they are nothing like they used to be. Instead they are more like pressure with a dull ache in the background. They throbbed a couple of times but oddly it was behind my left ear rather than my temples like it has been. To be honest each time it was probably my fault for pushing myself to hard because I still get winded very easily and am not used to doing too much physical stuff. I am also still under restrictions and am not allowed to lift more than 10 pounds until the bump goes away (like that will ever happen). I killed the headaches with 4 ibuprofin.
A Real Date
Finally finally finally a real date. I got to leave the house for real for the first time for a non medical or errand related reason. We investigated the Dos Taquitos off Creedmor Road and were very pleased to find it was not like the one in Raleigh. The theme was the same but it was a full sit down restaurant and bar. They give you a stuffed animal or similar item and record the number in your party. It is quite amusing hearing them call “4 baboons” or “2 Obama bobble heads” to seat people. Once they called 2 dolphins it was our turn and we immediately secured some cheese dip (with Jalapenos) and started hitting the margaritas. This was the best mexican food I have ever had. I have a new regular place. We both went home happy and lucky because the storm of the century hit right after we walked in the door.
Back to Work
I got the go ahead from the doctor to return to work last Thursday. My work has been gracious enough to allow me to ease back in by working from home for a couple of weeks with a flexible schedule to allow me to take breaks if I start to overdo it. This was a very good thing because I started work with only a few hours of leave left. If I had to stay out longer I would have to solicit for leave (which would take a while do to the various approval and solicitation processes), go on short term disability which cuts my pay in half, or go on leave without pay. None of these options is particularly appealing. I am not very interested in cutting my pay when we have even more medical bills rolling in (just got several more yesterday).
CSF Study Results
Last night I got the results of the CSF study. Now of course I can’t interpret what all this stuff means but I can see what is abnormal and what is not compared to the references they provide. So imagine my surprise when it says the reference protein is 15 – 50 and mine was 258! My glucose was also low and red blood cells were present among other things. I started googling and of course all kinds of catastrophic potential problems came up. The outcome I am looking for is “traumatic tap”. I would certainly consider what I had done traumatic. Luckily I had a doctor’s appointment scheduled for today so I wouldn’t have to wait too long to get some answers.
Doctor’s Appointment
So I bombarded my doctor with tons of questions. First thing I found out was she was not comfortable with doing the head wrap again so that is out (for now). I also learned that the CSF study was most likely traumatic tap. Exactly what I was hoping to hear. She also told me she would refer me to UNC and that I should get some good information that way. Hopefully they have a bump blaster. I told her my biggest concern with having another surgery with the same doctor is that one of the risks of another surgery is creating a CSF leak. Now operations to repair a CSF leak with the risk of creating a new CSF leak … hmmmmm. Not so sure that is a good idea unless you can tell me what you plan to do differently this time than the last operation that resulted in a leak. Adri has also read about John Hopkins using some type of glue or sealant when they put the dural patch in place to prevent leaks so she would like to go talk to them if I am told I have to have another surgery. I certainly am not looking forward to that but I am looking even less forward to going through this whole recovery experience again. However, I am staying positive and assuming it will not come to this. We also got confirmation from the doctor that it is more of an annoyance than anything else and as long as there is no infection or related complications we can just watch it and see if it will slowly heal over time.
Lottery Time
So we figured that with the luck we have been having (having surgery, complications, etc where the odds are less than 1 – 2% of the population) that we should play the lottery. We got 5 tickets absolutely confident that we were so lucky we had already won the $220 million powerball jackpot. Unbelievably it didn’t work out (see the post above about going back to work).
Well that’s all I got for now. Peace out. I’m going to watch Toddlers & Tiaras and Wipeout!