I am so lost on here!

[pjdk2012]

How is the week going for everyone? I am anxiously awaiting a phone call from the doctor's office. He said I could call for the results in a couple days after the MRI. He had told me that there were to many patients and not enough staff to call everyone so they do not call but will respond if called. So once again I am in a wait and see scenario. I hate that.

[ginnie]

I hope you get the MRI test results soon. I know what the waiting game is and it drives you nuts. right now I wait for a pro-bono lawyer. I have a case, and a good one, just no money to get it to court. so the waiting game happens for me too. Did the same with medicare and test results. Do any thing you can to make the time go faster, stay busy if you can....take care of yourself. ginnie

[pjdk2012]

The Neurologist just called and they are not ruling out the Chairi! There is still the srynix and it is longer than the images from 08. He said that he doubted at the appointment that I had the Arnold Chairi Malformation. The results of the MRI is that it may actually be that after all. The herniation of the cerebrums tonsils are not severe at all but if there is a blockage of spinal fluid or an obstructive flow than the next step would be a Neurosurgeon. I am almost happy about it because I have been told for so many years that it was all in my head! Looks like the doctor's were right about that ;-) [;-)] I am not telling the kids or other people about it. We will wait and see what the CINE MRI tells us and if I have to go to the surgeon.

[ginnie]

dear pjdk, good that you got this far with diagnosis. It is always better to find out what is wrong. I wish you all the best as you go forward with this. Most of us that are told "it is in your head" know that there is something wrong. That inner voice you have works just fine. take care of yourself. ginnie

[pjdk2012]

I can finally say that I have been given a confirmed diagnosis of Chiari Malformation! The NS said that it is a mild case however. I am plagued still 24/7 with various symptoms that can be down right horrid. I finally got to see a specialist at the Mayfield Clinic in Cincinnati, OH. They have confirmed the dx but, again another doctor and again, a call for more test. I drove 2 1/2 hours for this appointment to be told that I need to have a complete MRI with and without contrast and referred to another doctor in the practice to investigate the cyst in the pineal gland. I am so tired and so need some answers!

[ginnie]

Glad you at least got DX. Get the MRI and hopefully there will be a correction. Hang in there. I will keep you in my thoughts and prayers too. I know of several people here who have to deal with this. I am sorry you have to go through it. You are not alone, I do care about you. ginnie

[pjdk2012]

It has been a while since I have been on here. I was able to see a Neurosurgeon and it is confirmed that I have Chiari, but the doctor wants me to see another Neurosurgeon in his group to look more into the Cyst that was found in the pineal gland. I have had one that is about 8mm and I was never told about it. I found out about it only when I gathered information to send to the Mayfied Clinic in Cincinnati Ohio. I go to see a second neurosurgeon there tomorrow and will have a complete spinal MRI with and without contrast. Hopefully this will finally get us some answers and direction.

[pjdk2012]

Well I have gotten in with the second neurosurgeon and I have no where to go. The cyst in my brain and the 2mm Chiari are considered by this second doctor to be nothing to worry about and to go on with life. I have followed this trail now for three months to end up in a dead end. There are no answers for my health issues except a recommendation for Acupuncture and Chiropractic manipulation.

[ginnie]

I am sorry the neurosurgeon, this second one has not helped with your symptoms. Can you describe what the symptoms are to me better? Is there a way to manage the symptoms so that life is more comfortable? ginnie