The last 4 years sort of run together. I graduated from college, got engaged and planned a wedding, moved, got a puppy, bought our first home, got promoted, got a kitten, moved again. During that time I had numerous headaches/migraines, back and neck pain, signigicant weight gain, nosebleeds, and was tired all the time. In addition, I've had two bouts with amenorrhea (absence of menstruation). All of those symptoms were attributed to all of the stressful events, the amount of driving I was doing, and the size of my chest (now up to 38/40 DDD). I was generally physically uncomfortable almost all of the time which has made me a tad cranky with the husband (who, bless his heart, has put up with me and my moodiness).
More on the amenorrhea - both times resulted when I stopped taking birth control pills. The first time was shortly after we were married and I had determined that my migraines coincided with a specific week in the pack of pills (Ortho-Tricyclen). I stopped taking them to see what would happen to my migraines. I stopped the pills, the migraines were greatly reduced in both quantity and severity, but I also stopped menstruating. I went to the gynecologist and told her what I'd experienced. She did blood work and everything looked normal. She gave me progestin to see if I'd have a withdrawal period, I did and started taking Yasmin which she assured me was a lower more consistent dose that wouldn't cause more migraines. Period returned and after about 6 months, so did the migraines.
This continued until I'd had enough. The husband and I decided that while we weren't going to try getting pregnant, I'd stop taking the pills and we would just see what happened. My period was normal for about 6 months and then stopped. That was in November of 2006.
When I had gone to the doctor the first time for amenorrhea she had mentioned that my weight gain was most likely the cause of it. When it happened the second time, I was sure that my weight was to blame and promised myself to start doing something about it in the new year.
January 3, 2007 - I walked into 24 Hour Fitness and signed up for a membership with 5 personal training sessions to get me started. I was committed for all of January and February and was starting to see results when I noticed that my back and neck were starting to hurt constantly in early March. While at my company's sales conference in mid-March I wore a name tag around my neck for 5 days straight. I carried my cell phone, chapstick, pen, and a few papers inside of the name badge holder. My neck was in extreme pain for about a week after I returned, which I blamed on the name badge holder and the amount of time spent in the plane flying from coast to coast.
I waited for it to get better, but by the beginning of April it still hurt. I went to see my doctor about the neck and back pain with the hope of getting a breast reduction which I believed to be the cause of my chronic pain. For the second time in my life I wanted to punch a doctor. He said that it was stress related and not a result of my chest size. He said that I could have the reduction and still have the same type of pain because of stress. He prescribed muscle relaxers and pain medication and ordered x-rays "just to make sure".
When I got the results of the x-rays and saw that something was in fact abnormal and that an MRI was suggested, I called the doctor's office to have them schedule the MRI. They refused to do so unless I came into the office first. The first time I saw the doctor I had to wait almost 2 hours before he saw me. I told that to the receptionist and asked if they could just order the MRI since there was nothing they could do without that. She again refused, I vaguely recall yelling at her and hanging up on her (having worked in customer service for my entire working career this is definitely out of character for me).
In frustration, I called my mom who suggested that I go to her chiropractor who had helped her with her neck problems. I called and made the appointment for that Saturday (how cool is that?!). I handed the doctor the x-ray report and waited for what he would say. He explained the report and then explained what my treatment should entail. He said that I should consider a breast reduction and I literally burst into tears (also out of character for me - I am not a crier).
In addition to the treatment with him, he recommended a new primary doctor for me in Chino Hills who I promptly went to see. Her office was amazing and gave me referrals for an MRI and for an orthopedic surgeon on the very first visit.
Regular visits to the chiropractor led to great improvement. From my shoulders down I had very little pain compared to what I had a few months prior. My neck was still very tight and at the very top it felt like something was "in there" - an odd pressure that just wouldn't release.
Due to vacations and work, I wasn't able to schedule my MRI until the end of June. My doctor's office called me 2 days later and told me that I had Chiari Malformation Type 1. They were referring me to a neurosurgeon and asked that I come to their office to pick up the referral and report. This was July 3, 2007 and thankfully I was on vacation for the remainder of the week. I picked up the info and went home to schedule the appointment with the neurosurgeon and began researching Chiari.
This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.
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This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.
57 comments:
Oh no! I did not know that you started a new blog. Or that you had this. What happens now? Do you have surgery? Is everything ok? In a way, I am relieved for you that you finally know what the problem is and you now have access to help it. I am sorry you are in so much pain and I hope all gets speedily fixed. HUGS!
I didn't broadcast it.
Stay tuned for tonight's blog when I talk about what's next.
Hi,
Interesting that you mention weight gain, I am experiencing the same, it's almost like there's something in my neck/back blocking fluid and making my body swell up :(
I also have a chiari I malformation, large breasts, extreme weight gain, and problems with my period. My period seems to make my chiari worse. However, I had the decompression and I am still have problems with my head and neck. Did you have the breast reduction because I am considering that as well to help me.
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When your primary care Dr. gave you the referrals..were you on HMO or PPO insurance? We are having a nightmare trying to get a second brain mri done. I had one in 2001 under my ppo, different insurance, and my primary care dr hmo now is trying to say he can't do anything for me until one of his neuros recommends the brain mri. The neuro has seen my previous report but hasn't done anything yet. He hardly spoke English too. I'm stuck. Stuck in the HMO system. HELP!!
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