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!

Introduction and Knee issues

Hi everyone! I decided to create this blog to keep all of my family and friends up to date with my medical information so that there is one central place for people to check up on me. This first post is going to be lengthy, though I might split it up into multiple sections to make it easier to read.

First off, a little about me for those of you who do not know me that well. I am 19 years old and live in a suburb of Chicago. I have one older brother (just turned 23) who is in the United States Army. I am engaged to a wonderful man named Joseph and am extremely excited to be beginning our life together.

Now on to my medical journey

I was a relatively healthy child from birth and there was nothing to suggest that I would have any health problems. I was lactose intolerant as a baby, which caused a lot of issues when I was very small, but fortunately I have outgrown that! I also have had moderate to severe environmental allergies, especially fall allergies, for as long as I can remember. I am allergic to various pollens, dusts, molds, trees, and weeds. These were never controlled very well with any of the number of medications that we tried but they were nothing too awful. As I started to get older, around 8 or 9 I think, I got reoccurring sinus infections (about 2-4 a year), but my dad gets some also so we thought nothing of it. Around 12 or so these infections also started to be accompanied by ear infections and upper respiratory infections. I have also ground my teeth at night since I was very young. I fractured and dislocated my wrist at 7 and severely sprained my right ankle and foot at 6 as well.

When I entered high school things started to go downhill for me with my health. I went to our family physician after I began to develop headaches and knee pain. He diagnosed me as having TMD, which is a disorder of the jaw in which I grind my teeth and it causes jaw pain, ear pain, headaches, and various other things. He said that this was the cause of my headaches and there was nothing else wrong there. I was prescribed some muscle relaxers and told to get an over the counter mouth guard at night. This did help with the jaw pain, but I could not find a mouth guard that I liked and was comfortable to sleep in. I have only recently gotten a mouth guard made by my dentist, which was a fantastic decision. This eliminates the jaw pain I had when chewing as well as the ear ache and jaw soreness in the morning. This diagnosis, however, did not solve the problem of my severe headaches. This physician also said my knee pains were just growing pains and tendonitis. We accepted this as my brother also had tendonitis.

After a number of visits with this doctor he finally told my mother that I was just seeking attention and that I was making up my severe headaches and she should just tell me to tough it up. Obviously, this did not go over very well so we found a new family physician. This lady said she did not know what was wrong, but she referred me to an orthopedic surgeon for the left knee pain and an otolaryngologist (ENT) to see if the headaches were connected to my sinus issues.

I’ll start with the knee issues

 As I said, my brother had tendonitis during high school so we figured it was probably that, but since I was so uncomfortable we decided to get it checked out. My dad also has a very rare disease (that I can’t remember the name of) in one of his knees that causes problems with the cartilage and fluid in the knees so we wanted to make sure it was not that, even though that is not hereditary. We found an orthopedic surgeon, who turned out to be the same one who set my wrist when I broke it at 7 years old. He is absolutely fantastic and has since gone on to do surgery on my dad’s wrist, elbow, and shoulder, both of my mom’s knees, and my brother's shoulder. He ordered an MRI to check on the cartilage and tendons in my left knee as well as a set of x-rays. The MRI showed that my meniscus, which is a crescent shaped piece of cartilage in each knee, was severely torn and was catching every time my knee bent. This is what would cause the intense pain accompanied by a popping noise when I bent my knee or stood on it for too long. This would require a minimally invasive arthoscopic surgery to fix. In addition to this we found a tumor behind my knee.

I was sent to Rush University to check on the tumor. The doctor there diagnosed it as a benign tumor that did not need any type of intervention besides monitoring. In the mean time I managed to flip my kneecap over when I stood up, which was extremely painful! This landed me in a knee immobilizer and on crutches. My surgery to fix the meniscus was scheduled for October of 2009. The surgery went well and he was able to clean out all of the pieces that had torn and remove an extra shelf of cartilage that had no purpose and was probably contributing to the catching feeling when I bent my knee. This was all done through three small holes around my knee that all took only one stitch each to close and the scars can barely be seen now. My pain was easily controlled with oral medications and a pump that he had put into my knee that I could inject medicine directly into my knee for the first three days, and I was encouraged to use the knee as much as possible. I had extreme nausea and vomiting from the anesthesia for the first day or so: I got that one from my mother!

The recovery was not as smooth as we would have liked, however… Because so much was removed the tendon that runs through your knee, the ACL, was like a stretched out rubber band. This would allow my knee to hyper extend, or bend backwards, which the knee joint is not designed to do. This caused pain and weakness each time it did this and slowed down the healing process from the surgery. In addition the physical therapist I had had me do squats just a few weeks after surgery which is a very bad idea and caused a set back in my recovery. Perhaps the largest issue I had was that I had been in an immobilizer, which does just what it sounds like by use of a brace that extends the length of halfway up the thigh to half way down the calf and has 2 metal bars along the sides and one down the back so that the knee cannot bend, for about 5 weeks. This caused my muscles to atrophy significantly. I had to relearn how to do stairs and had to gain strength back. This also had caused my right knee and hip to become sore because I was over compensating for not being able to use the left. Overall, with the help of a custom brace that did not allow my knee to hyperextend and at home exercises I was able to regain strength in the leg and I no longer have ANY problems with my knees :)

I had to get yearly x-rays every year to monitor the benign tumor behind my left knee and make sure it did not grow. Luckily it stayed the same and did not grow or change shape at all! I can now go about every three years to monitor the tumor, although it probably will never change or give me any problems!

Wow this is already really long so I will end it here and continue my story in the next post!