Hello! Aside from an occasional pic on Facebook of my kids, I have not been one to cyber share. This is the first time I have joined any type of online group. I was taken in by all of the stories that are similar to mine. (or worse - I am so sorry for all the pain and suffering many of you deal with every day!) At 45, I've had various health issues. (Hypothyroid, Liver/Gilbert's syndrome, low back/neck issues, stomach/gluten sensitivity, migraines and even asthma as of this past summer!) I have always felt so fragile and would try to cover up any pain or ill feelings so I don't come across as a Hypochondriac or sad. (and be a good mom and wife to my family) I lead a pretty active life so I sometimes feel guilty when I complain or feel sad about my situation or when I go to a specialist knowing there are many folks who are doing much worse and have more difficulty with daily activities. I have suffered from Migraines as far back as I can remember and have tried all types of pills, therapies, etc. Always the same - low back of head and brow pain. Seemed the slightest things could trigger - more so as I got older (loud sounds, bright lights, talking to someone at my kids sporting event for to long!) In Sept 2014, I was playing tennis and fell backwards & hit my head. Over the next couple months my symptoms went from bad to worse. I felt dizzy all the time, like just got off a roller-coaster feeling...my migraines increased from 4-5 a month to 3-5 a week, ringing in ears, fatigue, etc. The slightest exertion sent me to bed or couch with Ice and pills. My Rxs could not get filled fast enough. In December my MRI found Chiari 5mm. My Dr said no big deal but sent me to neurologist for increased migraines. Neurologist said my Chiari was "borderline" so no concern and symptoms were likely from migraines, tight neck muscles, getting older, hormones, leftover from concussion, etc...I started to cry. Not that I want Chiari, but knowing is better than not knowing. (I had been online researching Chiari and as crazy as it sounds I felt much comfort that my symptoms matched up to SOMETHING - I feared I had MS since MRI showed white matter as well... "typical of migrainers" I hear). I find it odd that an MRI shows something abnormal having to do with my BRAIN and my symptoms match up to many Chiari symptoms, yet it is being totally dismissed. As I read the posts and blogs of others who have had to wait years and with worse symptoms, I am scared that things have to become severe before I will get taken seriously. Not that I want to rush to surgery, but if something is blocking fluids to my brain, I want to know BEFORE I get more symptoms and at least be "on watch" rather than adding more pills to the mix! I also have shallow breathing, tight chest and cognitive issues. I have been researching Neurosurgeons who may have experience with Chiari to get another professional opinion. How bad do I need to feel before I will be taken seriously? I have stopped working my part-time job because aside from chronic pain, I have become uncomfortable in conversation - mis-speaking and/or having trouble finding the right word...is it my brain or all the drugs I am on?.... either way, it sucks! Anyone try Botox for the head and neck pain? I am tired of taking so many pills!
Dog Runner,
Sorry to hear about the problems but I am very happy you are here. I have never tried botox but I was looking at what some of the doctors said. The size method is "old School", a better judge of seeing how the chiari is effecting you is to request a CINE MRI. This type of MRI checks to see if there is CSF (cerebrospinal fluid) flow. If there is a blockage or restricted flow you may want to look into surgery. I know that was not the primary subject you were talking about however at someitme it may come up here, the doctors office or another place.
With a lot of the symptoms you are describing, all of us have had some form of what you are describing and concerns with doctors taking us seriously. I hate to say it this way but sometimes (insurance permitting) you have to go through several if not more doctors 1. to believe you that your symptoms are real which they are and 2. a doctor who knows and understands chiari. There are many doctors that can do one r the other fewer who do both.
With all that is happening to you, try your best to remain positive and know you are not a hypochondriac and please do not feel guilty. You are doing the best you can at this point and having a talking with your family about what is going on or even introduce them here to this group and we can share.
If there is anything else I can do please do not hesitate to ask me.
Hi Dog Runner,
Welcome to the group! Sorry to hear about your symptoms & doctors not understanding. I’m in that same boat. My NS says I don’t have severe enough symptoms to have surgery, not that I want it, just don’t want the bad headaches anymore. Afraid to see if or how my symptoms could get worse.
You asked about Botox, I went to see my pain dr today about the headaches, this seemed to be our next step to try. So if approved by insurance, I will be getting my first shots soon. I will keep you posted.
Take care & let us know if you need anything. It feels good to know we are not alone.
Lisa
Wow! Thanks for all the kind words of encouragement and support. So glad I found this site as this can be a lonely topic… Thanks for making me feel so welcome. I look forward to learning more and sharing. Feeling hopeful.
Botox can help and is worth trying if you get a chance at it. The communication issues sadly yes, it happens. Personally I experience it more like a slow down in my comprehension of words in conversation.
Went to dr on Friday. Since my headaches are getting worse along with dizziness, dr has me trying a couple new RX. Steroids for 7 days and Elavil at night which is an antidepressant with success on chronic pain and may help me sleep. Go back in 2 weeks to start Botox approval process. Hoping to do less pill popping! But need to function. Still burning thru migraine meds faster than insurance allows refills. Reading so many of the members stories. I fear I am in a holding pattern waiting to go from bad to worse. Does life ever get normal again?
HI Dogrunner.
I know how you feel,It`s like being in Limbo and not knowing if things will get worse or better.I keep getting the borderline issue as if it`s irrelevant.But I know that Chiari can be devastating at any length.Good luck.