Hi and welcome to the Chiari forum.
I just bumped up a list of Drs that members have been to and liked (successful surgery) ...the list is not an endorsement or referral,..u do need to research the Drs on the list to find the best one for ur DS.
U may also find u need to travel to get to the best Dr.
We are all different in what treatment we have had, and some have other related underlying conditions that can affect how we feel and heal....
The Dr that placed the shunt, doesn't he/she do decompressions?
Was ur DS checked for related conditions?
The neurosurgeon that placed the shunt does decompressions and we like him, but we didn't "choose" him per se. We were referred to him by our son's strabismus opthalmologist who suspected he had CM w/ hydrocephalus & sent him for an MRI. Given the severity of the hydrocephalus & rapid change in our son's vision, the determination was made that he needed the shunt immediately. Since the shunt placement is a "relatively" standard procedure, we were comfortable w/ the neurosurgeon recommended by the strabismus Dr. The neurosurgeon is a relatively new Dr and not yet board certified, so we're doing additional research on other potential surgeons. We live in Dallas but are willing to travel to wherever in order to get the best treatment for him.
I'm not sure what you mean by "was ur DS checked for related conditions". Would you mind explaining that more?
Thank you so much for your thoughts and questions!
Many with Chiari can be prone to other conditions and several are considered related....they can be auto immune or connective tissue disorders,.
Those with Chiari can have a syrinx, tethered cord, disk issues,ICP, POTS,ehlers-danlos,sleep apnea....
Conditions like sleep apnea and ehlers-danlos* can affect the recovery process....so it is best to know which of these conditions he may have in addition to Chiari b4 surgery is considered.
So testing is brain MRI w/wo contrast, cervical spine , thoracic spine and lumbar spine MRI, CINE MRI.....
Testing for EDS and Hashimoto's thyroiditis, blood panels to check vitamin and minerals...as many of us can have added symptoms due to low vit B12, Vit D, magnesium and potassium.....
Did u find the list of Drs I bumped up?
Wow - thank you for ALL of that information!! I had no idea . . . which is kind of scary!
Yes, I found the list of Drs - fortunately, the 3 drs we'd already identified as wanting to get 2nd opinions from are on the list!!!!!
I'm not really sure how I found this forum, but it is the most informative source I've found on the internet! Thank you so much for creating it and keeping it going!!
Keep in mind not all the Drs on the list may be true Chiari specialists....u do need to research them....but, the names are here as they have treated a member successfully,...make sure u r comfortable with the Dr as well as ur DS....trust and confidence is very important for u as a parent and for ur son as a patient to get the most from the Dr and treatment rendered.
Keep us posted on how the visits go : )