Neurosurgeons in Philadelphia Area

Question

My 23 year old daughter was just Dx via MRI with a Syrinx (I don't even know how it is spelled?) Apparently it showed up on an MRI in 2005 and we were never told. She has had her share of medical issues: childhood cancer, Thyroid cancer and now this. Apparently they are calling it atypical as her only symptoms now are numbness in the neck and shoulder region. Does anyone know the name a good neurosurgeon in the Philadelphia area who is familiar with and specializes in the surgical management of this condition? Any information would be greatly appreciated.

chadry · Answer

My daughter sees a Chiari specialist in Delaware. He is at Du Pont's Childrens Hospital. His name is Dr. Campbell. Maybe he can recommend someone else in our area for your son. He may not see anyone over 18 but he may know another specialist nearby.
Chadry

selmaS · Answer

Hi...I bumped up the list of the chiari specialist list.....unfortunatly no matter the hype  a hospital or individual NS gets those with chiari...syringomyelia and related conditions need a dr that has his whole pratice focused on these coanditions.

Let me know if u have a problem locating the thread...and be advised many of us do have to travel to get to the chiari drs.

"selma"

ryansmom01 · Answer

You are so close to Baltimore, it is worth your time to check out Johns Hopkins.  I live in the B/W area and SO many people I know travel to JHH for many and diverse issues.  We are so fortunate to consider JHH a 'local' hospital for specialized treatment even though I live in Northern Virginia!  I am only familiar with Dr. Ben Carson, a highly regarded pediatric neurosurgeon who consulted on my friend's son's brain stem tumor.  Perhaps you can start there and get referred?  All the best to you and your daughter...

selmaS · Answer

The above post mentions the dr I went to and was not impressed by when he said "it is above me as to what can be done for you"

I went to TCI and had the PFD on May 28th...and am doing much better.....I am not sure y, but he didn't even want to do more testing...like a CINE MRI or a MRI of my thoracic or lumbar spine which TCI did.

I would not give a reccommendation , and I was not happy with the cost- I was charged as an out patient instead of a regular office visit...I saw him in an office for 5 whole minutes after he was over an hour late....I could hear him talking with the patient in the next room- not nething medical....and I waited for over an hour past my scheduled time for 5 minutes for him to say he had no idea what to do...
I guess u can tell it still angers me.

"selma"

slohce · Answer

Well I certainly don't live in that area however I did stumble over an article in yahoo the other day that had rankings for top hospitals in the nation. When I researched my hospital in the Neurology & Neurosurgery specialty (which is what chiari falls under) I remember seeing a top ranked hospital from your area, Pennsylvania Hospital, it fell in at number 32.
the link to the page is 
http://health.usnews.com/health/best-hospitals/
and then you will have to search that hospital name if you want to look at it's stats. 

also in a forum for chiari I saw there is a neurosurgeon from that hospital named under a recommended list. the link to that blog is 
http://www.************.com/boards/showthread.php?t=629759
and his name was Dr. Zager.

like I said I don't live in that area and I did not have my surgery done by him, but I thought it was worth mentioning. Hopefully you can look into it and maybe it'll be a good answer to your daughters needs.

chadry · Answer

I am also from your neck of the woods. South Jersey, but my daughter is 13 so she sees a pediatric surgeon in Delaware. I wish you the best of luck finding someone to help your daughter's condition. She has been through some very tough times.
My thoughts are with you.
Chadry

selmaS · Answer

Hi and welcome to the Chiari Forum.

U have the spelling correct.I live just north of Philly, I tried Drs in the Philly area.....unfortunatley they were of no help.

The Chiari Institute is in Great Neck, NY........and they are specialists in chiari and all related conditions like syringomyelia (syrinx).

Since ur DD has had other issues, I would imagine going to the specialists is what u would want.

She has been thru alot for her young age already.

Do u know how large and where her syrinx is located? Thoracic or cervical spine?

Our Health Pages here have more info on syrinx's and links to The chiari institute....their website has alot of info concerning syringomyelia.

U can access the HP's thru a link in the welcome message at the top of the forum or the icon above recent activities to the right of the screen.

"selma"