At a complete loss

[JessicaLLong]

Hi, I'll start off with I've had severe dizzyness, headache,confusion, blurred and tunnel vision, my hearing is very sensitive and I haven't been able to drive for two years. I went to a neurologist a year ago and he ordered a MRI which he told me was normal along with all of my blood work. He ordered another MRI last October and told me from that one he noticed a chiari malformation but said it was not causing any of my issues. So I scheduled a visit with s neuro surgeon who confirmed the chiari but said it was only 5mm. He ordered a cine flow test, I had that done last week. I went to his office for the results and he said the flow was normal and he had no reason to continue seeing me. So along with all of my symptoms six days ago my left foot all the way up to my hip has gone completely numb. I don't know where to go from here and any advise would be apriciated greatly. I'm starting to believe all of these Drs who claim none of my issues are chiari related and I feel as though I'm losing my mind....

[selmaS]

  We have had several members go to CC for treatment of Chiari....Drs names will be on our Drs list....

[JessicaLLong]

First off I'm going to say this forum has helped me more than any of the Drs I've seen this far. I Cannot believe there are so many others dealing with the same things I do daily, it's truely heartbreaking.  I did go to a new family doctor today and she gave me a breath of fresh air. She actually listened to me and never made me feel like I was going crazy. I have blood work scheduled on Monday and she is referring me to the Cleveland Clinic to see a neurologist who specializes in Chiari. Thank you for taking the time to respond back!!!  Is there anyone familiar with Cleveland Clinic?

[Elisaandbucky]

I am sorry to hear about your experience, and I hope the support here can comfort you. No matter what a doctor may tell you, your symptoms are real and quite significant to your chiari. I learned so much by researching. I never stop reading about the brain - especially about chiari and the related issues. My first neurologist visit  (who admitted that she hadn't had any other patients with chiari) discouraged me so much. Ultimately, it was my general practitioner who really encouraged me to seek more medical care for my pain. I am sure you know about the list of specialists on this forum. It is a collection of surgeons who have treated others on this forum. Depending on where you live, you can try to find one close by;  however, like so many other people who contribute to this forum, I travel from NC to see my doctor in NY. Finding the best specialist will prevent you from having to have future surgeries to correct what another surgeon has done incorrectly or incompletely.

As well as researching for specialists, there are two key things to help you when you do finally find a good one. 1. Keep a very specific pain and symptom journal - dates and mention of what activities may have contributed to them. With it all in writing, you won't have to remember everything to report when you get to see the specialist. You don't want to come home and realize that you forgot to tell the doctor something important. 2. The other thing is to keep a ongoing medical file of all your test reports from MRIs, CT scans, etc - even the disks from the studies. Ask for one at the time of the procedure so you do not have to go to get it later. It is always so insensitive when doctors say that they no longer need to see you. That's enough for discouragement right then. As Lynnrae mentions, Selma can give you direction as to your path. - doctors, tests to be aware of, related disorders, etc. For now, I wish you some peace that comes from knowing you are not alone.

[selmaS]

  Hi and welcome to the Chiari forum.

Many of us have a time not only getting the DX, but then finding a Dr that knows and understands how Chiari can and does affect us...you will want a true Chiari specialist as they also know ALL the related conditions as well....since the related conditions can also cause many of the same symptoms as Chiari it is hard to know which is affecting us

I would suggest you get copies of ALL MRI's you have had along with copies of the report...you can get this from the facility you had the testing at...not the Dr...as the Dr may charge you....going forward request copies of everything including reports so it is easier to get a 2nd or 3rd opinion.

Just bcuz  Dr claims your report or testing is "normal" you also know something is going on...so keep pushing till you get answers, if that means to fire your current Drs and find new ones so be it.

Know you are not alone...

[Lynnrae64]

It definetly sounds like you are not getting the answers you need. I have 5 mm as well, have not had cine a MRI yet, but your symptoms are very common with Chiari. I'm sure frustration is a good way to describe your feelings.  I have posted many comments on this site and I have found that doctors are all too unfamiliar with the symptoms relating to your condition. Have you been tested for EDS or any other illnesses....MS?

Do not get discouraged and know these are real symptoms, whether or not they can pin point the cause. It's very disheartening to hear that you are not getting answers. Are prayers are with you. I am seeing drs. Now that do want to move ahead with decompression, dizziness, syncope, blurred vision, pain in head and neck, tremors in arms, memory loss, fogginess, numbness in legs, nausea.....I'm afraid to drive and I've only been diagnosed since September. Good luck and hopefully Selma can direct you to a Chiar specialist in your area or give you some advice to move forward.