New to the diagnosis of the condition.

[jsmurf6921]

I just recently got diagnosed with CM less than a week ago and I am still waiting to hear back on my referral to my neurosurgeon and neurologist on when they can get me in. I have been experiencing migraines on and off for a countless amount of years now however they have been more frequent and more severe than ever before. I finally realized something isn't right when my current episode of migraines has hit over 3 weeks straight without a single hour of relief. At times there close to debilitating and they are at times much more tolerable but for the past 3 weeks they have not gone away. My family doctor ordered me an MRI and my results came back as CM. Which takes me to where I am now, in limbo waiting on the next step. They currently have me on Bystolic 5mg everyday for the first week and 10 mg everyday after and Imitrex when they get really bad. Today is one of my really bad days. I called my family doctor on the status on my referral and to try to talk to the doctor to let him know that neither medications are touching my pain at all but they won't return my calls. I am experiencing bouts of extremely weak balance and my depth perception is way off. I feel like my arms are several feet longer than they are and things seem to be very far away. I'm having bad pain in the back of my neck, my temples and behind my eyeball (mostly on my right side). I'm having trouble with speaking what exactly I am thinking as well. (very frustrating and embarrassing). My question is should I go to the local ER and will they even do anything for me. Like I said I am new to this situation and I have found some helpful information online but it would be very beneficial for someone with knowledge and experience with the condition to help guide me. My family doctor isn't even that familiar with the condition with him only having one patient in his 35 years of practicing medicine have CM. Thank you in advance with any help and guidance.

[Elisaandbucky]

I hope you are feeling ok as you are reading this response. As Selma says bone, it is most important that you research to find a true chiari specialist. I saw a surgeon in my town before I found a true specialist, and he chuckled at me and told me that I had "nothing wrong with me." This was very discouraging - especially being in pain. Your frequency, duration, and severity of pain sound very intense from your description in your post. Know that your pain is real. Do not fall victim to a doctor who does not have knowledge and expertise with Chiari who may tell you that "nothing is wrong," or worse (as I have read from other posts) that your pain is a result of stress. Your pain is very real and is impacting your everyday life. Post back with any information that you find with your research. There is a list on this forum of surgeons that other members have gone to and felt comfortable with. Let us know what you find.

[selmaS]

  Hi and welcome to the Chiari forum.

Most meds will not help pain from Chiari....so do not expect it...they may take the edge off which is the best you can hope for....try to avoid activities that will trigger the symptoms into flaring....

Also, take your time going to see a NS and NL...as you want a true Chiari specialist and not just a NS....

The ER can not help...so do not waste your time and money.the only time you should go is if you are having breathing difficulties or something like that....

Use our list of Drs to research them and find the right one for you.....you will also want to educate yourself on ALL related conditions and get testing for them in the mean time....once I got my DX it was a little over a yr b4 I had surgery....keep in mind not everyone with Chiari is a surgical candidate.

  My surgery was 5.5 yrs ago...and I took my time to find the right Dr and making sure I knew what ALL was going on with me.....take your time, do not rush..remember Haste makes waste...and it can affect the outcome of surgery....