Hello, My 17 year old daughter was diagnosed last week with CM 1... She also has a diagnosis of High Functioning Autism/ PDD NOS... Anyone else have the same? Researched Neurosurgeon, Researched CM 1 and now looking at the prevalence of ASD kids with CM.
I have way to many questions to ask,,, consult with neurosurgeon next Wed... but I would like to read some of your experiences with this surgery. Thanks JB's Mom
Hi, JB's Momma. Welcome to our community. How did your daughter's consultation go with neurosurgeon today?
Hugs,
Laurie
Hi Laurie,
Thank you sooo much for checking up on us... I could give you our day, blow by blow, but I think I'll save it for my book!
The appointment with the Dr. went mostly as I expected. I had studied a lot prior. Her video swallow study shows that she is mildly aspirating, however, I don't understand yet, what he was talking about doing for this... He said something about possibly having to cut bones from the front (thru her mouth) ...The only bone I see is the hyoid bone which supports the head?? . and he thinks there may not be sufficient room for closing the airway?? (I'm using my own words because I just don't get it yet.) He ordered a CT scan which they did yesterday at the hospital and x-rays which they attempted to do but for some reason could not get the pictures right and forgot one position he had ordered. He also ordered another MRI/Cine of the spinal cord because the first is unclear.
So question number one is, do you understand what the surgeon is looking for from the front of her throat/neck?
A second question is about the surgery itself... The surgeon she saw in South Carolina was ready to go ahead and dig in, but he said he would first do the decompression (skull and C1 and C2 laminectomy) and then do another flow study while he was inside to see if the duraplasty is necessary.
The Miami doctor is going in with the plan to do all of it, using the pericranium as a patch for the dural graft. What are the most recent "thoughts" on this procedure?
Today we are off to have her xrays re-done and hopefully we can get the MRI done as well. Surgery is scheduled for either July 10 or July 16... HOPEFULLY, the 10th because our summer stay-cation is paid in full for July 17-24! :(
Thank you so much, again! Natalie
It sounds like you have had 3 opinions, of varying degrees of aggression. It sounds like you are talking about a trans-oral odontoidectomy(cut bones from the front, through her mouth). If that is the case, that is necessary in cases of basilar invagination but is a MUCH more aggressive surgery than posterior decompression.
In terms of opening the dura or not, most open the dura(the logic is detailed on a youtube video sponsored by the Chiari and Syringomyelia foundation and I've given a shortened version of it on this site). Essentially, while the number of patients are not large enough to meet statistical significance, you go from a failure rate of 40% with bony decompression only to 10-20% by opening the dura. However, you add a 10% risk of CSF leak.
So we are looking for the Holy Grail for Chiari(who needs durotomy and who doesn't). Many of us hoped intra-operative MRI, with cine views, would give us the answer. The only published study(out earlier this year) makes it clear that is not the answer. As an aside, not sure what the stay-cation involves but the best treatment for your daughter, less than a week out from surgery is just taking it easy. I'll let others from this site who have gone through the recovery process tell you their personal experience but most patients don't feel like doing much for weeks after surgery(recovery is rarely measured in days from a Chiari decompression and never measured in days from a trans-oral odontoidectomy).
Hope this data was of some help!
OBJECT The authors completed a prospective, institutional review board-approved study using intraoperative MRI (iMRI) in patients undergoing posterior fossa decompression (PFD) for Chiari I malformation. The purpose of the study was to examine the utility of iMRI in determining when an adequate decompression had been performed. METHODS Patients with symptomatic Chiari I malformations with imaging findings of obstruction of the CSF space at the foramen magnum, with or without syringomyelia, were considered candidates for surgery. All patients underwent complete T1, T2, and cine MRI studies in the supine position preoperatively as a baseline. After the patient was placed prone with the neck flexed in position for surgery, iMRI was performed. The patient then underwent a bone decompression of the foramen magnum and arch of C-1, and the MRI was repeated. If obstruction was still present, then in a stepwise fashion the patient underwent dural splitting, duraplasty, and coagulation of the tonsils, with an iMRI study performed after each step guiding the decision to proceed further. RESULTS Eighteen patients underwent PFD for Chiari I malformations between November 2011 and February 2013; 15 prone preincision iMRIs were performed. Fourteen of these patients (93%) demonstrated significant improvement of CSF flow through the foramen magnum dorsal to the tonsils with positioning only. This improvement was so notable that changes in CSF flow as a result of the bone decompression were difficult to discern. CONCLUSIONS The authors observed significant CSF flow changes when simply positioning the patient for surgery. These results put into question intraoperative flow assessments that suggest adequate decompression by PFD, whether by iMRI or intraoperative ultrasound. The use of intraoperative imaging during PFD for Chiari I malformation, whether by ultrasound or iMRI, is limited by CSF flow dynamics across the foramen magnum that change significantly when the patient is positioned for surgery.