How it all started

I had asked what you might like for me to write about and one of the ladies asked me to write about how it began, so here is how my journey with cavernous malformations started.  I will say that this has been an interesting journey looking back.  I looked back at old doctors reports and found some information that I had forgot about. 

My journey began in 2009 with cavernous malformations, but I want to go back to around 1998 as a starting point.  In the late ‘90’s, I do not remember exactly when, I was having a terrible time with migraines.  I went to my family doctor who sent me to a neurologist who ordered CT Scans and MRI’s.  All of the results of these tests came back normal with absolutely nothing abnormal about them – so at this point I know that I did not have any cavernous malformations.  The neurologist told me that I was having tension migraines.  At the time I was taking four Tylenol every four hours and had been doing this for a couple of months.  The doctor told me that I could not take any form of pain medication for thirty days to get it out of my system.  He told me that with tension migraines there is an ingredient in Tylenol and most OTC pain meds (I don’t remember the ingredient) that can cause this type of migraine to become more severe and more frequent.  So for thirty long days I did not take anything, by the end of that time the headaches were mostly gone.  He told me to take Aleve for now on so that I did not suffer with the tension migraines any longer.

Fast forward to 2009 . . . oh wait, make that 2004, sort of.  In 2009 the doctor has in her report that I told her in 2004 I had “severe intermittent dizziness for half of the year”.  I don’t remember the episode in 2004 and I don’t remember telling the doctor about it.  So I will include this as a side note in my journey.

Now we really are going to go to July 2009.  I went to my family doctor because I was having episodes of numbness that came and went depending on what I was doing.  Also during this time I was having dizzy spells.  I was working at an emergency veterinarian and going to school to become a veterinary technician (veterinary nurse) and so these symptoms were interfering with both work and school.  The doctor told me that she did not think anything was behind it and that it should clear up.  I went back maybe a week to a week and a half later and told her that I was still having the same symptoms – they had now been going for well over a month.  My family doctor ran some blood work and told me my sodium was low and to start salting everything I eat and that within a few days the symptoms would be gone.  The next week I went back to the family doctor and I will never forget what she told me “I will send you to a neurologist, but you are completely wasting their time”. 

This is how I ended up going to see Dr. Stern at Mercy Hospital in Iowa City in September 2009 – she was a wonderful doctor and I really did like her.  During my first appointment she ordered an MRI to be done as soon as possible and then to go straight to her office to get the results.  Looking back I know it is sort of funny, but at the time I was not laughing at all.  When Dr. Stern came into the room she looked like a kid in a candy store.  She was so excited that she quite literally was bouncing in her chair and clapping – I am not joking – bouncing and clapping.  She told me that I have a condition called “cavernous malformations”, which she had never actually seen before, but she has studied about it.  She went on to tell me how she showed the other doctors in her group and they were all very interested in my case, oh and by the way, she can’t treat me because I need a specialist. 

Dr. Stern (neurologist) sent me to Dr. John Buatti, University of Iowa Hospital, an oncologist because he specializes in this condition and he would know what to do.  Anybody near Iowa City, Iowa I would recommend Dr. Buatti – he was very knowledgeable and really cared about his patients.  I called with a question once and HE actually called me on a Sunday afternoon from his home to answer my question.  How many doctors personally call you back, much less on a weekend, much less from their home – it popped up on my caller ID with his name and home telephone number!
In January 2010 I started having new symptoms that included more tingling in my left arm, more dizziness and imbalance.  The doctor always said dizzy and imbalance as two separate problems where I always thought that one caused the other.  The doctor said that I did have “some oozing” at the time of the new MRI in January.  

One of my classes took us to a parrot rescue. 

This is one of the episodes that happened that sent me back to the doctor in January of 2010:  I drove in to work at the emergency hospital and you had to walk through the treatment area to put your things in the locker at the back of the building.  I was saying hello to everybody and looking around when the veterinarian on duty looked at me and in her calmest, most monotone voice she could manage she told me to “SIT DOWN”.  I told her I had to get my things put away and clock in and she told me again to sit down.  I had no idea what was wrong, but I noticed then that several of the other staff were staring at me.  I sat down and she instructed one of the girls to call 911 and I started arguing immediately.  She told me I had a stroke and they needed to get an ambulance.  We argued back and forth and somebody brought me a mirror and the entire left side of my face was drooping.  I explained it was my head condition and that I would call my doctor the next morning.  She was satisfied with that since the rest of my body seemed as fine as it was during that time and she sent me home. 

During this time I remember that my balance was very bad – I would lean on walls or furniture to keep me upright.  I also fell down quite a bit during this time – I was talking to a friend and he said I got this strange look and fell straight over backwards; I did not even try to catch myself it was so fast.  When he ran around the couch to me I was laying there laughing my head off – I was so scared and worried I just did not know what to do and it came out as laughter.  This same friend was talking to me one day when I was laying down and he said my eyes rolled back in my head and my head fell sideways like I was falling down.  He later told me that it scared him when that happened – that I could fall down while laying flat on my back. 

My symptoms have come and gone six times until August 2012.  I had just moved to North Carolina in May and started a new job in August when a migraine hit that was absolutely horrible.  I called my doctor from Iowa who helped me find a doctor here.  I do not have a copy of these reports yet and my memory gets very fuzzy so we are going off my memory alone and not the notes to help me back it up. 

We drove to my new doctor who ran an MRI; I do not remember the results of the MRI other than I had more lesions that previous MRI’s had shown.  The doctor referred me to see a neurosurgeon regarding gamma knife surgery.  My understanding of gamma knife surgery is that it is one large dose of radiation that they aim at the one lesion causing problems.  After you have the procedure it will take two years to find out if it worked or not – by work – I mean to see if it has stopped it from bleeding in the future and shrinking it slightly.  I had questions, but the doctor could not answer them, he told me there is not enough research and he did not know.  I am glad he told the truth that he did not know and to this day I cannot decide if gamma knife would be a good option or not.

Since August of 2012 my symptoms have never gone away and I had to quit work in November 2012; this was a mutual decision between me and my employer after they called an ambulance to come and get me.  The emergency doctor suggested that I apply for disability and that is what I did.

In April 2013 the disability board wanted me to get a full neurological workup to see how I was doing.  They allowed me to go to my own doctor to have this done.  If you would like to be entertained go stand in front of the mirror and do the test that was my “full neurological workup” and I failed the test miserably!  The doctor told me to open my mouth and stick my tongue out - - wiggle tongue from one corner of your mouth the other and do this several times.  Now just for fun reply on Facebook at Erin’s Dizzyland and tell me what your eyes did during this test. (https://www.facebook.com/erinsdizzyland) My eyes go crazy blinking very rapidly, my head starts bobbing like the bobble head on the dashboard and I get very dizzy.  This is the test that got my approval for disability on my first try.

I hope this answered the question that I was asked and I extend the offer again, if there was anything you would like me to answer please ask.  Or just for entertainment name an off the wall topic and I will come up with something for a blog for you.

Thank you so much for reading all of this – I know this one was very long.  I hope you have a wonderful and blessed day!!