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!