Photos of My Incision

This is the day after my surgery before they removed the dressing

This is two days after my surgery, right after they removed the dressing

This is one week after my surgery

And, finally, two weeks after my surgery

Now you can't even see the incision because my hair is so thick! You can just barely see a half an inch of the scar under my hair line when my hair is in a pony tail. The hair that was cut is about 3 or 4 inches long and growing in quite nicely. You can't notice it at all any more if my hair is in a pony tail or if it is down.

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!

GI, allergy testing, and anaphylaxis

Well it has been just a bit longer than I expected to get to the rest of my medical Journey! It has been a long month that is for sure! Well we will start after the surgeon decided not to do the Chiari surgery in July of 2010.

In September of 2010 I was experiencing severe abdominal pain. My primary care physician was worried it might be appendicitis so we went to the ER. Thankfully it was not appendicitis, but they did not know what it was. They did a CT scan to check my appendix as well as multiple blood tests. I was sent home with a pain prescription and told to make an appointment with an OB/GYN because they suspected my pain might be from a ruptured ovarian cyst. Well after this appointment the doctor told me my stomach pain was not from anything to do with my reproductive system and she referred me to a gastroenterologist (GI doctor).

The GI doctor was fantastic! He was not sure what was causing my issues, but he was determined to rule out anything and everything possible. He was concerned that I might have Chron’s disease or another serious digestive ailment. He first did an ultrasound to check my pancreas and other internal organs and he also order a barium swallow test to see how my digestive tract processed material from the mouth through the upper GI tract. These, as well as the blood tests that he performed, all came back normal. At this point he decided that he wanted to do an exploratory surgery to view my upper GI tract. I was sedated and a scope was inserted into my throat and down into my stomach so that he could look for any abnormalities that may have been present or damage to my GI tract that occurred. Again this came back entirely normal… Well at this point he had ruled out all of the serious, and more benign conditions too, so he said that it must just be irritable bowel syndrome (IBS).

Well feeling defeated once again, we decided to take a break from all things medical and let me try to just enjoy my high school years without constant doctors appointments. Well of course being me that did not work out so well! In December of 2010 I was having a relaxing night at home with my mom and my fiancé (well then boyfriend). After he left and my mom got in bed to read I decided to take a shower. About 10 minutes into my shower my lips started to get all tingly and they felt puffy. I got out of the shower and looked into the mirror… my lips were huge and my skin was getting all red and blotchy! Well I showed my mom and dad and off we went the emergency room again. By the time we got the ER I was swollen all over my body and red, blotchy and itchy. The scariest part though was that my throat was swelling shut. That is the fastest I have ever gotten into an emergency room! Well they blew two veins trying to get an IV in, but finally one of the nurses got it in. It did not take long to get me back to my original size and color and send me home exhausted. They determined that this was a severe allergic reaction to something, but we were unable to figure out exactly what caused this.

Well they recommended that I get food allergy testing redone, as well as environmental allergy testing to see if we could pin point why exactly I had this life threatening allergic reaction (called anaphylactic shock). Well no luck with that either! I have no food allergies, and moderate to severe environmental allergies, which we knew from the previous round of tests. Again we had zero answers to this medical mystery. I just had to carry around an epi-pen in case it happened again. Thankfully I have not had another anaphylactic episode since this, nor did I ever have one before this.

Well after this episode I went back to the local neurologist and begged him to do something. He basically said that he had no other ideas and I just needed to learn to live with my symptoms. At this point I was exhausted!!! My family and I couldn’t take any more of this so we left all doctors alone and I just learned to tolerate my symptoms for the next year.

Well I will write more later, but this gets us to about January of 2012. Hope you all are doing well!

Allergies, sinus problems, and neurology fall of 2009 to summer of 2010

In this post I will talk about my sinus issues, allergies, and the beginning of my neurology journey from fall of 2009 to summer of 2010.

So during the issues with my knee problems we also made an appointment with an ENT doctor. He did an MRI and I think a CT of my sinuses to see what was causing my sinus issues. At this point I was experiencing frequent sinus infections, double ear infections and upper respiratory infections. In addition to this I was also had severe sinus pain and pressure under my eyes. I had allergies as well, but the reason we were there was really to determine if it might be my sinus issues that were causing my severe headaches, dizziness, fainting, and ringing in the ears. The MRI showed that there were a number of polyps in both of my sinuses under my eyes, called the maxillary sinuses, and a few in the sinus cavities in between my eyes, called the ethmoid sinuses. He said they were fairly significant and did cause the infections and sinus pain, but were not causes my headaches.  He sent me to an allergist to check on my allergies as well, but said that I needed to go to a neurologist to figure out what was causing these neurological symptoms. The allergist showed what I already knew: I had allergies to dust, mold, trees, weeds, and various other things. Some of these allergies were fairly significant, but still were not the cause of my neurological symptoms. I also found out that I do not have any food allergies. Since neither of these issues seemed to be what were causing the severe neurological problems they were put on the back burner.

At this point I was referred to a local neurologist. He did a brain MRI with and without contrast. This was when we found out that I have Chiari 1 Malformation. This is when the cerebellum, at the very back of your brain connected to the spinal cord descends down into the spinal canal. This is technically a malformation of the skull in which the skull is too small for the cerebellum to fit into and is therefore pushed down into the spinal canal. I have a “minor” malformation in which the cerebellum descends 5 millimeters past the base of the skull into the spinal canal. Although the length is not very large, the symptoms are severe.

This is a very basic illustration of Chiari:

Chiari_graphic.gif

He also referred me to a rheumatologist to make sure that I did not have any autoimmune disorders or other disorders that may be causing my symptoms. This doctor found three things. The first was that I am severely deficient in vitamin D. I now take a daily vitamin D supplement along with my multivitamin and calcium supplement and this is under control. This other was that an autoimmune factor called anti-nuclear antibodies was positive. This is a factor that indicates that an autoimmune disorder is present. It was not extremely elevated, but enough so that it was concerning. He ran a TON more blood tests that all came back negative so we assumed that it was a false positive, which does occur in about 5% of healthy individuals. The final thing that the rheumatologist found was that I have hype-flexible joints. This means that my joints bend in directions they are not supposed to. This may have contributed to the issues in my recovery from the knee surgery.

For the Chiari we decided to try to treat the headaches, which occur in the back of the head and radiate forward, with medications. I tried about five different medications over the course of a few months and none of them helped. Many of them even caused significant side effects. At this point the next course of action was to try a chiropractor to see if this would help to relieve the pain. It was then discovered that I have mild scoliosis in my cervical spine (neck) along with a boney abnormality in my lumbar spine (lower back). These treatments did not help at all to relieve my headaches. I now know that chiropractic treatments is absolutely NOT recommended for patients with Chiari as the malformation can be exacerbated by the manipulations done by a chiropractor.

In among this I also got glasses for the first time ever. I had always had perfect eyesight, but weak eye muscles. We decided to get my eyes checked to see if my eyesight might be contributing to my headaches. It turns out that I am mildly nearsighted. I got glasses with a prescription of +0.75 left eye and +1.25 eye. My prescription now is +1.25 left eye and +1.75 right eye. This did help my headaches coming from my eyes and the tension in the front of my head did start to feel better, but the headaches in the back, the worse headaches, did not improve at all.

At this point it is now the spring of 2010 and we knew what is causing my issues, but we had NO idea what to do about it. I was having severe headaches that started in the back of my head and radiate up over the top and along the sides. My headaches were made worse by noise and straining, such as sneezing, coughing, crying, or heaving lifting. Along with the headaches I had dizziness, ringing in the ears, fatigue, nausea, light-headedness, and fainting spells among other symptoms. At this point I was missing at LEAST one day a week of school and was very frequently unable to do much. I would often lie in the basement all day where it was quiet and cool. I was starting to not want to go out and do extra activities because I felt so poorly.

My local neurologist decided that he did not have the expertise to treat me any longer and he wanted to send me to a more specialized neurologist. Since I was only 16 at the time I was referred to a pediatric neurologist. He said that based on my symptoms, the way they interfered with my daily life, and the fact that I had not responded to any other treatment he wanted me to see a neurosurgeon to determine if I was a candidate for surgery. In the mean time he said that I should try to cut preservatives, like those in bacon and peperoni, out of my diet. These preservatives can make headaches worse and some people see a relief if they are cut out of their diet. He also suggested I start taking a magnesium and vitamin b supplement which can both help people with headaches see a reduction in frequency and/or intensity. Neither of these things worked, but it was worth a try at that point!

I was then referred to yet another doctor; I know there were a lot by this point! I went to see a neurosurgeon at Loyola University. He was a very nice doctor and he realized how much I was suffering and needed something done. He said the physical malformation was borderline in regards to if he thought the surgery would help or not, but after hearing all of my symptoms and the drastic way that they interfered with my daily life he decided that he thought that surgery would be the best option for me. The surgery was then scheduled for July of 2010 and although we were all nervous my family and I were excited that something was finally going to be done to help relieve my symptoms. He ordered an MRI of my cervical spine and an MRA, a type of MRI that looks at arteries, of my neck to be done before the surgery. About a week before my surgery his office called to say that they had gotten the results of the MRI and MRA. The MRA was clear, which mean that the arteries in my neck were transmitting blood to my brain adequately. This was extremely good news. After getting an MRI of the cervical spine the surgeon was able to get a closer look at the malformation than he could on the MRI of the whole brain. After seeing this he decided that he was wrong and he did not think I would be a good candidate for surgery. My surgery was cancelled and essentially I was told that nothing more could be done for me and that I had to live with the pain and figure out how to adapt my lifestyle in order to deal with this condition.

Well that it’s for tonight! I’m not having a great day so I will try to finish up the introduction of my medical journey from July of 2010 to present (April 2013) within the next week or so. Goodnight everyone!