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Looking for guidance and succeful treatment!!

Posted Oct 28 2009 1:26pm

I've posted here before, but under another account I can not remember, So I am back!

Here is a rundown of my issues as explained to the general public which is my Facebook Friends page.. =)

I know some have you have thought this for a very long time, and some have just started wondering recently with all my talk of medical problems and testing being done. So I thought I would send out a note to clarify and explain for everyone and also ask for your thoughts and prayers as the road ahead of me is unpaved and very bumpy. Thanks for your time and I will try not to bore you.

As you may or may not know, at 13 I was diagnosed with migraines. I accepted this and went on with life. Although now I wish that I had asked more questions and dug a bit deeper. The pain that I experienced during my headache attacks began to become so common that I thought it was a normal occurrence, everyone has headaches, right?

After Houston was born I started having issues with my memory and concentration, It was suddenly hard for me to find my keys or remember a name. I just thought it was something that came along with parenthood, or maybe left-over pregnancy brain... Then, a few months ago, I noticed my vision had started to deteriorate. I could no longer see well out of my right eye, and I could barely drive at night. My hearing had suffered too and I was noticing more and more episodes of ringing or deafness in my right ear. The headaches were all the time persistent. I would often wake up and not be able to turn my head, I contributed the neck pain and stiffness to the migraines, rather than considering it a symptom in itself.

By this time I'm thinking the worst, maybe I have a brain tumor? My fears were intensified after a visit with a Neurologist, she observed my gaze and gait and ordered an MRI, as I tend to lean to the right and not steadily track images. The MRI came and went along with an MRA which observes the blood and vessels moving through the brain.

I got the results on May 15th. The Radiologist had noted a cyst in my sinus cavity, in itself, not really a concern- but then he also recorded the measurement for an Arnold-Chiari malformation. Basically, for some unknown at this time reason, the base of my skull is either too small, or my brain too large, and thus- the cerebellum is being pushed through the foramen magnum (hole at base of skull were spinal cord meets brain). This hole is truly only big enough for the spinal cord, so with the cerebellum there too, it is putting unnecessary pressure on my spinal cord and brain stem causing some of my symptoms.

 

This is the second note about “What’s Wrong With Autumn”.

I still have Chiari Malformation; with a herniation of 2.3 mm (without a syrnix) I’m still having symptoms that I relate to this, numbness in my hands, neck pain, problems swallowing. But unfortunately, I have yet to find a neurologist; much less a neurosurgeon that agrees that it is bad enough to fix with the decompression surgery. While I am suffering from symptoms and would like to get better, I have a feeling that in order to get the surgery needed to hopefully correct this, I will more than likely have to get worse before I can get better. From what I’ve read the age-old definition of Chiari is a herniation greater than 5mm. So, I guess I’ll suffer until it grows another few millimeters and then try to find someone to take me seriously.

I have just been diagnosed with Sleep Apnea. Moderately severe, out of 384 minutes of sleep I have 185 apneas, so I’m waking every two minutes. This makes me exhausted during the day, and may even be the cause of my cognitive issues and memory loss. I’m still waking to get a CPAP machine, but I have a follow-up with the sleep center this Friday and will probably get the machine that same day. The CPAP will blow air into my nose and mouth through a mask and will help keep my airway open and hopefully be enough to remind my body to breathe.

I still have vision and hearing issues. Right now I am wearing glasses a majority of the day, but they don’t seem to be helping, my vision in my right eye just seems dark, things are blurry sometimes, and it seems to take my eyes longer to focus than it used to. My right ear is my main problem in hearing, I notice more and more times that I am either having deafness or ringing. I’ve seriously considered getting a hearing aid, and at 19, that’s a big deal!! Most of the times I can cope by having the person speak up or doing a combination of lip-reading and just plain guessing in context what someone is talking about.

I’ve started to have this myoclonic jerk. Much like what you experience as you are drifting off to sleep and jerk awake. Except, I have it multiple times a day. I haven’t been able to find a pattern, but I notice it more as I am driving as I sometimes swerve on accident. This happens in my neck, shoulder and chest area. It’s literally debilitating. On bad days, I just feel it is safer to stay home rather than drive and risk a collision. I’ve mentioned my concern about this to THREE different neurologists and none of them seem to think it is an issue. I’ve got thoughts of Progressive Myoclonic Epilepsy in my head, but I can’t get a doctor to order an EEG, so I’m again stuck at the mercy of my medical team.
I have neck pain. Of course I’m sure many people do and I contribute this to the Chiari, but it is really starting to be bothersome. This pain starts as a stabbing sensation between my right ear and shoulder and usually ends up as a dull ache with shooting pains down my right arm. I can’t fix this with OTC meds, so I have started seeing a Chiropractor. There are many limitations for adjustments with Chiari patients, but we are hoping to work out a plan that will get me some pain relief without complicating my herniation.

Spell check has become my best friend. I find myself typing things that literally make NO SENSE to others, but I can understand, it’s as if my brain has developed some sort of short hand on its own. I have to re-read things to make sure that others are able to understand. I have problems remembering words and often can’t remember the correct spelling of the simplest things… I’ve never been diagnosed with a learning disorder or anything like that- I used to be a whiz at spelling bees and love English class, but now I dread words completely. I prefer to do most of my communicating by computer because it’s just easier for me to speak when I have the keys in front of me and the spell-checker on; this is starting to isolate me from people though. In first grade, I narrated my class production of Chicken Little, at 6 years old, flawlessly. If I tried today, I doubt I could keep up with the kids acting out the scenes. It takes me 3 or 4 reading to understand what a paragraph says. Reading books is almost out of the question because of the time it consumes, but I used to LOVE reading!

I’ve been having issues with high blood pressure. A couple of weeks ago I was having this eerie feeling that I was falling, like all my muscles would tense and let go and my knees just felt like they were giving out, I called my general practitioner and she said to take my BP, I did and found that is was 134/104. I took it twice because I just could not understand why it would be so high. Only slightly different, but still through the roof! I went in the be seen a few hours later and it had leveled out back into the normal range, we couldn’t find anything wrong other than a low grade fever of 99, so she sent me on my way. I’m not sure if this happens more often as I normally do not take my BP, but I know of a few different occasions that I have the falling sensation that accompanied the increased BP.

I’ve stopped all of my medications. I was on Cymbalta and Topamax for my migraines, but I wasn’t really seeing any improvement after 6 months of active therapy. After being off of the drugs for 6 weeks now, I have less headaches then while I was on the drugs, but I still have at least one BAD migraine a week. Much better than the 2-3 but still it concerns me!

During my initial MRI in May, it was noted that I have a small cyst in my sinus cavity, My doctor at the time said it was probably because of recurrent sinus infections, so this is probably still present. I still have almost constant sinus drainage that is super annoying but I’m used to it.

I’m hoping that by this summer I will have another MRI to check for change in the Chiari, and maybe find a doctor that will order an EEG. Then maybe after that, some kind of successful treatment.

 

I hoping to find some answers by posting here, but most of all- I need support. I've began to isolate from friends because of my health and it really is starting to take a toll on my mental health. Thanks Everyone!

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