View Full Version : Need a Neurosurgeon who knows what they are doing!
10-29-2006, 12:21 AM
I'll make this short!
I have an arachnoid cyst that is 3.8 cm (since 2004, will find out in a few days if it is bigger). The hospital which does my MRI's state there has been no change since it was discovered. My surgeons don't agree and the last one states that he feels it has grown. It has flattened the top of my cerebellum and my tonsils (stem of my brain) is now smashed into my spine. I also had inflammation of the ventricles.
I have been going to surgeons since 2000 and the sad part is I have to test them to make sure they know what they are talking about! Some have more comfort with this than others. The thing is, I have not been comfortable with those I have seen. They all seem to contradict eachother or something may have been stated that I have researched and confirmed NOT to be true!
Looking for advice and names of neurosurgeons that would be good. I live in CT and will see one next week in MA. I also saw information on Dr. Jho and I contacted him a few years ago. He advised me to send him my scans but I never did.
Any recommendations you can make will be appreciated. Thank you and I hope you find what you are also researching. If you are living with something as well, remember to never lose faith!!! Always keep your head up! Take care! :)
All the best to you for your appointment next week.
I don't live in your country, so can't even begin to make suggestions really. I just wanted to wish you well in finding someone who can help you.
The only other thing I can suggest (and you've probably done this by now) would be to contact NINDS. They might be able to offer suggestions for a referral in your area. I thought Yale would have someone, but I couldn't find anyone on their site specific to arachnoid cysts.
NINDS - arachnoid cysts (http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm)
all the best to you.
I just found a reference elsewhere to Columbia-Presbyterian Neurosurgery
10-31-2006, 10:13 PM
Thank you so very much for your time and support. I really appreciate the information, you have no idea what this means to me. I am hoping for the best but so sick of dealing with this, to be honest.
I'll send you a message directly with the outcome.
Thank you again!
10-31-2006, 10:52 PM
I know of a lady who had this and she saw a Kenneth Ott , M.D. in San Diego. Last I heard she was doing well. Good Luck.
Also found info at Stanford Department of Neurosurgery and The Cleveland Clinic which are a long way away, but they might be able to suggest someone in your area as well. Not sure if they work that way, but one would hope they would try.
I checked out the Hydrocephalus and Tarlov Cyst forums just in case there was some info. in there as well. One user in Hydrocephalus I think it was, recommended a Dr Peter Black and when I looked up his info., I notice that there are a couple of email addresses posted there. One is his personal one and the other for patient matters to his clinical office. If you continue to have difficulty finding someone for your specific case, I'd email some of these other well known specialists and see if they can recommend someone in your area.
Boston Neurological Foundation http://www.boston-neurosurg.org/faculty/black.html
All the best.
11-01-2006, 07:23 PM
I cannot tell you how much your messages mean to me. Thank you both so very much for your replies and for taking the time to help so many people.
I wish you both the best in all you do and in life. Take care and I will be sure to post my results once I meet with the DR.
11-03-2006, 01:02 PM
Sorry you are going through this right now. I had a colloid cyst of the third ventricle surgically removed Nov 2000. My neurosurgeon was Dr. Leon Ravvin in Lexington, KY. I know this is quite a distance from you, but I am sure you will find a highly skilled neurosurgeon in your area. Look in your phone book for the brain injury association in your state. (arachnoid cyst is considered an Aquired Brain Injury)I have heard the name Dr. Jho quite frequently on different boards, so he would definetly be a good one to research.
Best of luck to you. Do a Google search on arachnoid cysts. You should find quite a bit of helpful information, Dodi
11-04-2006, 02:05 AM
Yale? Columbia Presbyterian? What I did when looking for a spine surgeon for a spinal cyst was do a medline search to see if any of the guys i'd been recommended to had written on the subject, something which would prove their interest and experience.
11-04-2006, 11:00 PM
You both mentioned very good points. I did go to Yale and the Dr who I saw, and was highly recommended, wanted to crack my head open (no other way to word it) right away! At the same time, I was seeing someone from St Rapheals who told me if I was his daughter, he would tell me to wait and not jump into such a risky procedure. The same thing was shared with me by another Dr in UCONN. It's all in how comfortable the Dr is with an arachnoid cyst.
I will take your points and research on that as well. I also heard about Dr. Jho and contacted him. He advised me to send him my scans. I never did, heard a few contradictory statements on him. I have seen him publish a few studies on this type of cyst so I have not ruled him out. I also like that he is someone who prefers minimally invasive surgery, I would prefer that anyway!!!
I really appreciate your time and wish you both the best with your health and happiness!
12-01-2006, 02:10 PM
I can recommend one NOT to go to.
J Weinberg at MD Anderson in Houston.
12-13-2006, 01:02 PM
MD Anderson specializes in Cancer treatment and is very quick to operate or look for findings that would indicate the presence of a cancer and the need for early treatment. This may be why they move so quickly to OR. However, I sense your concern is greater than quickly moving to diagnose with potentially unnecessary procedures.
12-24-2006, 05:45 PM
Dr. Barth Green in Florida is the expert in that field. Just google him or look under medical advisory on the www.asap.org site
12-24-2006, 07:00 PM
Don't know if neurosurgeons are on this site or just neurologist, but check out www.msneuroratings.com
The site is set up by State and people rate the neuros who've treated them for MS. Some real good ones and some real losers depicted here. A good thing to know before you end up in their office.
12-25-2006, 12:04 PM
here is Barth Green info. He is top notch in Arch cysts
Barth Green, MD.
Professor and Chairman
Department of Neurosurgery
University of Miami
The Miami Project to Cure Paralysis
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