Should I keep trying?

[RN06]

I've had Chiari symptoms for 3 years now. It started after I had my 3rd baby. I was also diagnosed with syncope around the same time by my cardiologist. I went to an internist, who ordered the MRI and referred me to a Neurosurgeon. The MRI report stated a cerabellar tonsil herniation of 3-4mm. All my info was sent to a Neurosurgeon here in Utah. I was called by his receptionist to tell me it does not require surgery and that I needed to go to a neurologist. I had no explanation why it did not need surgery. I asked my Internist to send my info to another neurosurgeon, who also said that it does not require surgery. I gave up there. Now, 3 years later I've had new symptoms appear, and all my symptoms are progressively getting worse. So, I've decided to pursue my illness further. I would like to go to a Chiari specialist, which requires traveling out of state. At the same time, I don't want to spend the money getting there, just to be told again that it does not require surgery. From my research, I know that Chiari specialists look at the symptoms as well as the degree of herniation. My headaches are only debilitating once or twice a month, otherwise I just have a mild headache that I can tolerate. It seems like most chiarian's who have had surgery had severe debilitating headaches. I'm wondering if anyone out there has experienced this (had mild headaches with other symptoms that were debilitating), went to a Chiari specialist, and were able to have the surgery? I've listed my symptoms below. Thanks in advance for your help!
Symptoms list:
headaches/neck pain
pain throughout
blurred vision with floaters, light sensitivity, nystagmus
hearing sensitivity, hearing difficulty with background noise present
tinnitus
dizziness
memory loss
Jerking muscle spasms throughout
occasional tingling/numbness in face and hands
weakness in arms and legs
balance problems
chronic fatigue
insomnia
POTS
difficulty swallowing
nausea
abdominal pain

[desertstorm2009]

I hate auto correct on my phone! I meant to say as is the case with many of us!

[desertstorm2009]

Hello RN...
Don't you just love how Dr's leave us hanging? It was inappropriate of that Dr's office to respond in that way to you. You should have had an appointment and a discussion with the NS, but regardless you do deserve an explanation as to why he feels surgery is not necessary. If you look at your symptoms alone, it's obvious that your life is impacted by your Chiari in a significant way as is the case withstand of us. This criteria alone is basis in part for the surgery. My advise is to seek another opinion from a NS who is actually treats this condition. You don't necessarily need to go out of state to find a good NS. Keep advocating for yourself. You already know the problem. Good luck :-) Lisa

[RN06]

t@CC622 Thank you for your input. That is exactly what I want is to have my life back! I know that it will be long road to recovery, but very well worth it if the surgery is successful. Good luck to you, I hope things turn out well for you again! @selmaS Thank you! I had no idea there were non-profits out there! I will definitely be looking into that :)

[selmaS]

  Hi and welcome to the Chiari forum.

The things that a true Chiari specialist look at in addition to symptoms and how it is affecting ur quality of life is if u have a CSF obstruction...also if u have ne related conditions...and u already have been DX'd with POTS so other issues would be a syrinx, tethered cord, ICP, sleep apnea, ehlers-danlos....

As for getting to a Dr out of state....try some of the non profits that will fly u free of charge or for a donation....see the health pages for a link....http://www.medhelp.org/health_pages/list?cid=186

[CC622]

I'm new to the Chiari forum.  I joined because I have had Chiari since 2002.  My Chiari was diagnosed after a very bad fall while jogging.  It finally got so bad that I had the decompression surgery in 2005.  I had all the symptoms that you listed and more.  My symptoms continued to worsen and the worst was when I started experiencing problems with my ability to breathe involuntarily.  I had numerous nights where I'd wake up because I'd stop breathing on my own.  It was so scary and frightening that I made an immediate appointment to see my surgeon and he did the decompression surgery in a couple of days.   The neurosurgeon was an excellent doctor and the surgery went well.  Even though it took awhile to recover from the surgery, I've had many years of being free of those dreaded life altering Chiari symptoms.    I have no regrets about the surgery because my quality of life was restored.  Keep in mind that the surgery is not a cure but provides more space at the base of the brain to make room for the elongated tonsils.  

Last year I fell again and it was a nasty fall.  Within about 2 weeks I started having pain in my head and it progressed to a wide range of Chiari symptoms.  I went to see a neurologist and he wasn't able to help me.  He was convinced that it was some type of head trauma and would heel over time.  He finally told me that there wasn't much he could do, and recommended that I see my original neurosurgeon.   So my takeaway from my experiences is that you should find a neuro doctor that specializes in Chiari and who understand the symptoms, effects of the malformation, and how to go about giving you a better quality of life.  I've had the decompression surgery once, and although it was tough and took some time to recover, I would do it again to get my life back.  I'll see my Chiari neurosurgeon in September and hopefully will get some options from him about how to proceed.  Good luck with finding a doctor to help you.