Diagnosed and not sure

[haselme]

I have been struggling with migraines for years and have saw numerous neurologists. The place I was being treated recently got where you can see your test results online which is how I accidentally saw the chiari diagnosed from an MRI done in 2013. When I asked about it my neuro told me that wasn't causing it and that I needed to be treated elsewhere. I was in the er around that time and they gave me a referral to Rochester Mayo. The appointment  was a few months out so I went and saw a neuro at Noran in Minneapolis. The er doc and the Nero both dismissed it and gave me more prescriptions. Finally my mayo appointment rolled around and he looked at everything and said i think you should go to the pain rehab clinic.None of the meds we have tried over the years have really worked and my symptoms keep getting worse. It went from random migraines  to having one all day every day from the last 10 months straight. And other things keep popping up. From the sensitivity to light and sound to dizziness. Loss of vision, blury vision,  ringing in the ears, confusion, memory loss,and more. I found from searching that there is a chiari center in Milwaukee so I had my mri's sent over and they did an addition MRI and did one of the spine ,took some blood.I really did really like Dr. Heffez and Dr. Mitchell. Both who thought after looking at the scans and the tests said the chiari is causing my issues. Part of me is happy to have an answer but part of me still has doubts. They didn't push the surgery but said I would benifit from it. I dont know why I am having doubts. My biggest fear is having the surgery and getting worse. But nothing is getting better so I just feel stuck. Did anyone else feel like this? Sorry to be so long winded!

[selmaS]

  Both vitamins if we are low can cause many of the symptoms we experience with Chiari,numbness,tingling,brainfog....and some with EDS tend to have mal absorption issues so we tend to be low on these as well as Magnesium and Potassium.

So to have the levels brought up to "normal" levels helps to see if the symptoms are still present and not the result of the low levels.

[joshipea]

vitamin b12 and vitamin d,
what is this for?

[haselme]

Thanks again for the support. They did say today that they want me to do 2 months worth of vitamin b12 and vitamin d replament for 2 months. I have that scheduled with my primary and will see another doctor  during that period. I appreciate the support!

[DSH519]

You are describing my life 14 years ago. Once I had the decompression done in April 2001 all symptoms disappeared. The surgery is not a cure but an effective way to slow the progress of the disease. I happen to have an extreme case of type. 1, so a second surgery may be in my near future, but I cannot complain about 14 great symptom free years. Talk to the surgeon, balance the risk, reward, and trust of the surgeon.

[selmaS]

  Hi and welcome to the Chiari forum

I know it is confusing to know what to do, and just getting some testing and a confirmation is not enuff..more testing to rule out ALL related conditions b4 you even consider surgery is every important....

See a few other Drs and compare what you are told...this should help you make a decision once all info is in....

Many of us have been thru a similar situation like you have had and we have dubbed it " the Royal Chiari Runaround".

Since we are ignored and sent from Dr to Dr we jump at the first one to  acknowledge our symptoms and confirm a DX....take your time looking at Drs and ask others that may have been to a Dr you are considering....

Know you are not alone

[haselme]

I know they did a study of the flow and the cine MRI. I cannot  remember for the life of me what he said about the flow. They did do the most through testing of any place I have been which I greatly appreciate. And you are correct, I do know it's time. I think just reading some of the stories freaked me out. They are supposed to call tomorrow  to see what I want to do, so I will schedule it. My biggest concern with that is being single and not having family around to help out afterward. I am sure i will figure something out.I have been out on disability  for awhile now and really would love to be able to do something  someday soon as I am just here and not really living anymore. Thanks for the support. I have felt like no one understands for the longest time, so I am glad I found this place.

[girlinxile]

I am assuming the chiari center did a csf flow study or cine MRI? Lots of people have chiari but many NS's told me that the blockage of csf is what makes you surgical.
When I was diagnosed in June 2013, I was freaking out. When my flow study came back with a blockage and my symptoms were getting worse... They did surgery. I was like not right now, too busy. I wanted to wait til December. By the first week of August I had to go on medical leave because I couldn't focus, migraines and vision changes were constant, the neck pain was constant... And nothing worked. I agreed to the surgery then and then had delays because of my blood work. By the time my surgery date rolled around in August I would have crawled the 30 miles to the hospital if it would make it stop.  Get your hesitation. It's major surgery. But I always tell people you will KNOW when it's time. You just cannot deal with it any more, your quality of life, job and family all cannot deal with it anymore.

[Lottida]

Just wanted to say Hi & tell you to take your time making your decision so that you are sure about the surgery.  I am 8 weeks post op & will be having my 2nd surgery for a CSF leak on Tuesday.  I just wanted you to know that despite my set back with this leak, I feel much better than I did before the surgery.  With that being said, I would do the surgery all over again because my quality of life was greatly affected & I knew that I did not want to live that way.  I think you should weigh the pros & the cons, review your quality of life & then determine if you are ok with having brain surgery (it can have major complications but are rare)!!!  Can you see yourself living as you are right now??  If not then surgery may be your answer.  Just know that not all patients have complete resolution of all symptoms.......some patients have return of some symptoms weeks/months after the surgery.  Good luck & hope this was of some help!! :-)

[joshipea]

wow that sounds terrible, i am meeting with a neurosurgeon soon and i am really terrified that he might say something like that. or that i wont be able to get help when i talk to him. (i found out very recently about my chiari
i am also very very scared about the surgery but from what i have been reading most people never have big complications.
I feel stuck too, i completely understand, i have been feeling drunk and dizzy since 2011-2012, the doctors always said it was due to high blood pressure or anxiety.
i got an mri but it doesnt say much, it doesnt even say the size of my chiari malformation,
the weird thing for me is that i never have headaches or migraines. my head never really hurts.