This is a posting I put up previously…
I am sorry to hear about all the brush offs. The same thing happened to me with two MRI’s being dismissed by the radiologist, then in turn by a handful of neurologists and other speacialists. Please keep in mind that radiologists are not neurosurgeons and are not able to tie a clients symptoms with radiological findings. Radiologists see descended cerebellar tonsils “all the time” in people with no such symptoms- of course the percentages are not what you and I think of as “all the time”. In regards to Chiari findings, they report what they see and leave it up to other specialists to determine if it is an actual concern. Radiologists typically do not remark on the horizontal view of the foramen magnum. If you do not know what this view is, please research and be prepared to ask specialists.
Also keep in mind is that if the radiologist does not raise a red flag on their radiological findings, then a neurologist is not going to be too concerned. Typically, a neurologist does not even look at the actual images - just reads the MRI report. Also, a neurologist might not even see very many people with Chiari findings on an MRI report AND talking about Chiari symptoms. One of my neurologists had been working for over 30 years and had seen one patient with Chiari at the beginning of his career. Needless to say, he did not know what to do with me and was fuzzy on what Chiari symptoms are. Often, a standard neuro physical assessment is not going to reveal much neurologically going on.
Discouraging with the gaps in medical knowledge and coverage - yes. What to do about it? Ask questions and be knowledgeable.
Ask a radiologist/neurologist to review your MRI with you 0- saggital AND horizontal view. The saggital view reveals the length of the descension while the horizontal view indicates how much of the foramen magnum is filled with descended cerebellar tissue. A neurosurgeon needs to review both in conjunction with your symptoms before making a decision of surgery.
Ask your neurologist what he knows about Chiari symptoms?
Does it fit with your presentation? What criteria does he use to refer to a neurosurgeon?
Are there other concerns or medical issues that need to be ruled out?
Does he feel that psychological issues need to be ruled out? Some times doctors bring this up as a way to get rid of you as they do not know what to do with you within their scope of practice. Try not to be insulted. You can say that psychological issues have indeed been ruled out so could we please focus on medical issues. It happens…
Ask to see a neurosurgeon. Ask the same questions.
I read somewhere that the average length of diagnosis for a Chiari patient is 5 years. It did not say how many doctors a person had to see. Carry on and continue to see specialists who may have a knowledge base appropriate to help you.
Please watch your attitude when discussing with specialists as they do not like their authority to be challenged. Approach the dialogue as a partnership with you desiring to understand and to find help. Presenting angst, hysteria, and hostility tends not to help. Of course the stress of being ill and not having any medical support does not bring out the best in us. Good luck with your acting skills!
Carry on the journey towards health!