Went to NS who is sending us back to the Neuroligist!

[chiarikidsmom]

I posted on here about a month ago about my son and head twitching being a symptom.  He went back to the NS who doesn't believe the twitches and Chiari are related. He goes back for a MRI in March and to see the NS.  In the meantime, the NS is sending us back to the neurologist and said if the neurologist can prove to him the two are related we will talk about surgery. My son's CSF is very restricted (that is the best I could get out of the NS), his herniation is 13 mm (coming down to the c2).  Is this severe? and can it possible get worse?  Has anyone ever had a herniation that has descended more? I am getting a copy of his last MRI but not sure what good that will do me since I will not really know what i'm looking at.. I though if the CSF was restricted they did surgery but the NS said he only does surgery if 1) the herniation progresses 2) there is trouble swallowing or slurred speech 3) a syrinx. Does this sound right?

Wendy

[selmaS]

Hi Wendy.....size of the herniation matters and it doesn't...it is very confusing. What can make chairi severe is the blockage of CSF and if the herniation is also impinging the spinal cord and or brainstem.

Symptoms can continue to worsen BUT they r also known to cycle so he could be in for a break.Yes a herniation of 20mm has been reported.

All surgeons have their own way of clarifying to themselves what constitutes surgery....I have no idea if u saw a NS or a chairi specialist...there is a difference.

Quality of life , symptoms and CSF blockage are some of the main things considered b4 surgery is given as an option.Ur surgeon is specific as to which symptoms must affect the patient b4 he will operate.

Not all of us have a syrinx...I did not....and had my surgery in May....and the MRI's will help u get a second opinion.

I can only give my opinion....which is all the drs can do as well and as many drs u go to u can have that many diff opinions.....find one u feel comfortable with and trust what they tell u...once u do follow their lead.

It is clear u do not agree with what u were told...outside of going back to the NL....they do the dx, so let them rule all the other possibilities out....and that can only help ur DS.

Please keep us posted
"selma"

[Shane99]

I had a 20mm herniation and a syrinx so they operated on me right away. But different doctors have differant opinions of what constitutes a "serious" problem.

I would recommend a second NS opinion - and make sure he/she is a Chiari specialist.

[rod44]

Hi Wendy, I was DX with borderline CM and a syrinx, I was lead to believe from my NL that the numbness and other symptoms i have in my feet, hands, neck and upper back is due to the Syrinx but I also have Nystagmus an eye/vision problem along with vertigo & tinnitus that are most likley due to the chiari despite it being a small herniation. all the Doctors agree on one thing and that is that the CM is most likely the cause of the Syrinx. i dont understand the need for one doctor proving that the head twitching is a chiari issue to another, this is causing even more stress for you and your DS, why cant they just go and find the cause and treat it rather than this messing about.....

I agree with selma and Shane that you need a NS with Chiari experence.....and who cares

Ray

[sissy114]

I haven't been on here in quite awhile, but i also think that you need a 2nd or even 3rd
opinion. I was never told how long my herniation was but it does come down to C2. My
NS dx me as have Chiari II. My only problem was neck, shoulder and severe arm pain.
I had surgery Dec '08 and am doing well. Is your son having any other symptoms other
than head twitching? Restricted CSF can cause many different symptoms as you can
see that everyone on here seems to have different problems. I hope things go well for
your son.

sissy