Chiari Malformtaion: Neurosurgeon says it's clear, neuroradiologist says no

[sls101284]

Fist off, thank you ahead of time for any possible advice. I began having problems in May with severe head and neck pain and left extremity weakness. In September I was hospitalized for severe left sided weakness and numbness and treated with 1g Solu-Medrol IV for 5 days. Most of the weakness and numbness resolved with the treatment. Beginning in December I have had near constant head pressure that is concentrated in the back of the head and behind the eyes. I also have dizziness, ringing in the ears, nosebleeds, loss of balance and coordination, and increased intracranial pressure. I was found to have increased intracranial pressure during a spinal tap performed at Columbia Presbyterian’s ER in mid December. I was being treated for possible Benign Intracranial Hypertension with Diamox but that didn't work and I was taken off of it.  I sent an email with several of my MRI images to a neurosurgeon to see if one could see anything abnormal and he sent it on to a chiari specialist who called me and said that I have obvious chairi malformation. I saw the neurosurgeon in the office and he showed the malformtaion to me and sent me to have a CSF flow study. The radiologist said it was normal and basically called the doctor crazy for thinking it's chairi. I would like your opinion on this matter, who to believe, other possible causes, medication to try (NSAID and pain meds don't work), etc. I have a call into The Chiari Institute-no response yet. The following have been ruled out as a possible cause of my illness: multiple sclerosis, stroke, tumor, brain hemorrhage, and infection.

[CCF-Neuro-M.D.-PW]

Its difficult for me to comment on this without seeing the images!

An arnold chiari (type 1 I assume?) malformation has radiological definitions of the cerebellar tonsils being more than 5mm below the level of the foramen magnum (where the spinal cord enters the skull). This is somewhat inaccurate as the MRI is done lying down and standing up there may be a little extra 'sag' due to gravity.

It is controversial and difficult to prove that symptoms are due to a chiari I as this malformation is present in between 0.5 and 1% of the normal asymptomatic population. Objective evidence by exam etc of upper spinal cord or lower brainstem dysfunction supports a causative role of the CHiari. This should be carefully assessed before embarking on surgery (posterior fossa decomppression).

I would suggest seeing a good headache neurologist to both treat your headaches and review your images to confirm or refute a Chiari malformation. Alternatively, Dr. Edward Benzel at the Cleveland CLinic SPine Institute is an expert in this area and could offer a second opinion.

Good luck

[sls101284]

Sorry to post this additional statement but there have been some new developments as of today. At first the neurosurgeon called and changed his mind that I don't have chiari (he went from being certain of 7-9mm to nothing) and he doesn't know what is wrong with me. I then spoke to the neuroradiologist and he said I do have a 3mm herniation but since the csf flow study is normal it isn't worthy of a chiari diagnosis and couldn't be causing my symptoms. I then called the neurosurgeon back and he said well, i'm glad i totally didn't blow the reading of the MRI's and said that we will treat me for a pain disorder since that isn't a significant herniation and the flow is ok. I know that even a 0-1mm herniation can cause symptoms and I don't know what to do now. I need any help I can get as these headaches are 24/7 and very painful.

[just_duckie]

Have you had another spinal tap to measure your intracranial pressure?  How did they rule out benign intracranial hypertension?
The reason I ask is that I was first dx'd with chiari type 1 and then intracranial hypertension (IIH).  The symptoms mimic each other.  And many who have IIH don't respond to diamox and other medications used to treat it.  I hope you have seen a neuro-opthamologist before disregarding IIH as a dx.
Good luck. Mel