Chiari Surgery

This post will include my Chiari surgery and recovery. In December of 2012 I decided to follow the advice of the rheumatologist and go back to Loyola University Medical Center and see Dr. Anderson again. He was happy to see me back and concerned that my symptoms were not getting better. He was extremely kind, looked at my new MRI from August and said that my malformation had gotten worse and my cerebellum was now descended about 8mm beyond the bottom of my skull. He debated again as to whether or not I would benefit from the surgery, but in the end he apologized and said that he thought he had made the wrong decision nearly 2.5 years ago and that he should have done the surgery. I ended up scheduling the surgery for 12/21/2012. I cleared all the pre-op tests just fine except for the anxiety!

Ok before I go into my experience with the surgery I will explain what the surgery is. This is the explanation that I sent to friends and family: “This surgery is called a Chiari Decompression surgery. The surgeon will increase the opening at the base of my skull, the foramen magnum, using a high speed drill. I am not clear at this point if he will also be removing the top arch of my first vertebrae as is commonly done during this procedure. He will then take a piece of pericranium tisue (a piece of deep scalp tissue just outside the skull) and use this to patch the covering of the brain (the dura) and create a larger space for my cerebral tonsils. The goal of this surgery is to increase the space for the cerebral tonsils and decrease the intracranial pressure while at the same time allowing for an easier flow of cerebrospinal fluid”.

The surgeon ended up not removing the top arch of my first vertebrae. 

I was extremely nervous, but I was also ready to go do the surgery! The day of I was very dizzy from being dehydrated and my nerves were on edge from being overtired and anxious. Both of my parents, my fiancé, and my future mother-in-law were all with me, which helped tremendously. The surgery ended up being later than we expected which was hard since we were just sitting in the waiting room. I ended up crying numerous times during those two hours, but hey who can blame me? The surgery was supposed to start at 10 a.m. and I was to be called back at 9. I was finally called back at 10:30 or so and I said goodbye to everybody but my mom who was going back with me. It helped to be doing something finally! I changed into my gown and started signing all the papers and receiving all the instructions. They then put the IV in, which is never easy with my small veins and made even more difficult because I was dehydrated. They finally took me back to the O.R. this was the first surgery that I actually remember being in the O.R.! That was interesting, it is really cold and quite intimidating, but at this point I was not scared, just ready to get it over with.

The surgery ended up being closer to 6 hours than the anticipated 4… This freaked out my family, but obviously it didn’t faze me at all. The next thing I remember is waking up in the recovery room with the BEST nurse ever. I really was not in that much pain at all and felt great from all the meds I was on. I was actually really hyper and things only got worse when I got my morphine button! It took forever for my family to be able to visit me, but finally they came up and it was really nice to see them. They neurological intensive care unit was full so it took a long time to get me a room for the night. Finally at about 9:30 I got settled into a room. I was still feeling pretty well and not using the morphine button very often. I forgot to tell the nurse that anesthesia made me vomit… that was a surprise to her when at about 10:30 I began vomiting over and over again and it wasn’t controlled by the nausea meds. I didn’t like her very much, but the look on her face when I was vomiting ALL night was really priceless. My mom wasn’t able to stay which was sad. I hardly slept that night due to the meds and the vomiting, but other than that I was doing ok. As long as I didn’t move it wasn’t too bad, but honestly it felt like I had a cinder block strapped to my head. Moving my head was not fun at all and I was very grateful for the catheter so I did not have to get up to use the restroom.

The next day the neurosurgeon did his rounds and said I was ready to move to a regular room. Yay! He said the catheter and the arterial line in my wrist could both come out. This was very good news since it was two less lines I was attached to! I was then able to get out of bed with my mom’s help. I was terrified to get out bed, but it was actually very easy to do and I had no problems. I was then transferred to a regular room. I had a PT evaluation, which I passed with flying colors. I did stairs just fine and could walk up and down the hallway with no issues. The only thing I didn’t pass with regards to that was that I was not allowed to be in the dark because I would get dizzy. This was an easy fix; I just had to sleep with a nightlight on.

An unexpected issue from this surgery was that I could not swallow anything solid! It would get stuck in my throat and I would cough it back up. The speech-language pathologist came to evaluate me. As sad as this sounds I was VERY happy she came! It was fascinating to see her work and be on the patient end of therapy as this is what I want to do after college. She said nothing was wrong and that it was probably due to weakness from the muscles in my neck being cut. I just had to drink protein shakes for a couple of weeks and this issue resolved itself.

Ok I guess I have made the pain seem like a non-issue at this point, but that was not the case. After the meds from the surgery itself wore off I was in a lot of pain. It hurt to even roll over and holding my head up was difficult. I got a soft collar neck brace to help support my head. This helped and at this point I was ready to go home. I spent one more night in the hospital and was discharged on December 23. This was great since it was in time for Christmas :)

Ok this is already really long already so I will finish up the rest of my Chiari surgery journey later. Reminder we are at the end of December of 2012 at this point.

Sinus Surgery, Neurologists, and Allergy Shots

This post will go from January 2012 to Winter of 2012.

Well since we were getting absolutely no where at all with my headaches and neurological issues I decided to readdress my sinus and allergy issues. I found a new ENT and I REALLY like him. He ordered a CT scan of my sinuses and compared them to my old films from 2010. He said there were definitely large polyps present in the maxillary sinuses and that they were much worse than they were a few years prior. There was no way of knowing if these polyps would continue to get worse, but he was fairly certain they would not get better without surgery. Next, he ordered a new round of environmental allergy skin tests. These came back as we expected: I have moderate to severe environmental allergies. Mold, dust, trees, grasses, and pollens of all sorts were big triggers for me and were the reason for my year round allergies with particularly bad allergies in the fall.

At this point at I had four options: 1) do nothing and continue as I was 2) try medical management 3) have surgery to remove the polyps 4) start allergy shots. Well option 1 was not an option and I had been trying option 2 for many, many years so that left options 3 and 4. We decided to go for surgery since it was likely that even though allergy shots would help my allergies that I would still get the sinus infections and sinus pain because of the polyps.

I went in for the surgery in April of 2012. It was a relatively short surgery if I remember correctly. I had absolutely no issues besides the vomiting from the anesthesia, but I expected this. The recovery was pretty straightforward and I was really feeling significantly better within a couple of weeks. I still had the allergies, but we wanted to wait to see the full results of the surgery and see how my fall allergy season went before I committed to allergy shots.  

After this I ended up needing all four of my wisdom teeth removed. I have a small mouth so my dentist felt I should go straight to an oral surgeon as soon as I noticed they were coming in. The oral surgeon agreed and after some fighting with the insurance company I got all four of my wisdom teeth taken out in July of 2012. This was an easy recovery and everything went very well, in fact compared to my other symptoms this pain was extremely easy to manage. 

That August I was so fed up with my headaches and neurological symptoms that I decided to go to a new neurosurgeon. He ordered a new cervical MRI. This was about the only good thing that came from him… He said yes I had Chiari, but no there was nothing he could do for me.

I then went to a rheumatologist to check again for autoimmune issues or any blood diseases. He ran numerous blood tests and was a really wonderful doctor. My vitamin D levels came back normal, which was great. This meant that the maintenance over the counter dose I was taking was doing its job. Other than that the only thing he told me was that I had hyper extendable joints, which I already knew from the last rheumatologist I had seen. Although he was FANTASTIC he was not the right kind of doctor for me. He suggested that I return to Loyola and see the surgeon who had seen me previously, and then if this did not work out he suggested to go to another teaching hospital. This proved to be an excellent suggestion, but I was a little hesitant to act on it.

In the mean time I was still having allergy issues, so my ENT and I decided that it was time to start allergy shots. I started those in November of 2012 and will probably be on them for 4 years at the least. I learned to do them myself and was able to take them home in January of 2013 so I don’t have to drive an hour to go get them done twice a month (it was more often at that point).

Well I think I will stop there for now and save the rest for another couple of posts!