Had a visit today with my first neurosurgeon in 4 years. Saw 2 neurosurgeons 4 years ago who both agreed that they would operate for my 9-10mm Chiari and syrinx but both advised the "wait and see" approach as I was not too symptomatic at the time except for headaches that were treatable. Fast forward 4 years and I have declined quite a bit. Not as bad off as some of some of you here (bless your hearts) but my headaches are excruciating and have stopped responding to any medications except narcotics and no doctor will prescribe them to me.
I had a CSF MRI done in April which came back as normal fluid flow, but had this MRI done at a different facility as all my other MRI's, and this MRI showed my herniation at 4mm instead of 9-10. Also, since it was just a brain MRI, it did not show my syrinx. Well, the neurosurgeon today only looked at my CSF MRI and not the others, so not only did he say he wouldn't operate, he does not believe I have a Chiari OR a syrinx. When I told him about my other MRI's that show a syrinx, he said the white matter is just white matter and it "doesn't mean anything." When I asked him about the fact that my other MRI's used contrast and the CSF MRI did not, he said "you don't need contrast to find a Chiari Malformation." He said he would review "one" of my regular MRI's and "get back to me," but he is pretty sure surgery would not help me at all since he doesn't think there is anything wrong with me. When I asked him if there was anything he could suggest to help my headaches, he said point blank "no."
How on earth can a doctor not believe what is written on a radiologists' report?! I have never heard of such a thing. I am stunned beyond belief. I wasn't even sure I wanted surgery but thought since the surgeons offered it to me 4 years ago it would be a done deal now if I wanted it. I thought I would get to ask all the questions I wanted to ask and more. I got 5 minutes with him. Unfreakin believable. I was in tears when I left. I can't believe this happened to me.
I am holding out hope that Dr. Ellenbogen will see me. I called his office and was told I needed to put together my "case" and if he deems that I am worthy, he will see me (I don't mean this in a bad way at all, I totally get it - I have heard fantastic things about him). I requested my medical records weeks ago but so far haven't received any of them, I don't know why. As soon as I get them I am sending them straight to Seattle and pray I'll get the phone call from his office that I am desperately, desperately waiting for. He is my last hope. I could go see the neurosurgeons I saw 4 years ago but I wasn't crazy about them; I heard Ellenbogen is the best.
Thank you for "listening." To all of you going through the same stuff, don't give up. We don't have a choice.
I hope you get in with Dr. ellenbogen! It is so frustrating to suffer so much and have to fight for help. I also fear my normal cine will make getting care worse. Still have to wonder if those are always accurate. Naturally the day I had mine was a “good” day. No headache or dizziness.
WOW... that scares me seeing that I see Mayfield NS on Monday... I had my CINE a week ago and they said that I have deminished CSF flow. I just want the headaches to stop!
Thanks all. Has anyone ever had a surgeon tell them flat out "no surgery no way" and had another surgeon say "yes, surgery could definitely be of benefit to you?"
You are in my prayers I know this is a very stressing time. I was diagnosis in 2001 and have had several surgeries due to complications of my Chiari decompression. I was first diagnosed with a 4mm ;however when they operated it was 14mm. The operation was an emergency because my spinal fluid and blood flow became block at c-1 to c-3 and I developed a Basilar artery aneurysm. Fourteen days later I developed a brain infection and Hydrocephelus (fluid on the brain). I was only home 38 days in 2003 to to being in the hospital or rehab. I have a very long story. I would advise you to receive a second even third opinion until you feel comfortable with the decision. I am not advising for or against surgery. Chiari as you may know is a opening at the base of the skull like Spina Bifida and the cerebellum tonsils slowly pertrude into this space causing spinal fluid to become unable to flow properly. This in it's self becomes a problem because pressure builds up in your skull and causes the body not to work properly. Nerves become damaged and you my feel ur arms or legs go to sleep and numb. Nausea and headaches can become worse as time passes. If you would like to talk more or if I can help in any way let me know and feel free to ask. I have been through a lot and been around several Chiari patients. I do not let this bring me down for the most part I am a survivor, It's not always easy though. God Bless!
Yes I have and you must find a dr. that treats Chiari, such as any of the Chiari institutes. This is a disease that is not known a lot about and some dr. refuse to even treat it. That is a reason why groups like this are important Indian use to be a state that very few dr. recognized the severity of Chiari and how much damage lack of spinal flow can really hurt the body. I actually had a orthopedic dr. inform me of the nerve damage in my arms after my hand had completely gone numb. He had to re route severl nerves in my arm/hand so I could regain use of my hand.
Sparkyschick said:
Thanks all. Has anyone ever had a surgeon tell them flat out "no surgery no way" and had another surgeon say "yes, surgery could definitely be of benefit to you?"