Hiya all,
Just a quickie, I was wandering where you are all from? I’m in the UK in the West Midlands but I know a lot of you are in the USA. From what you have read on here or experienced how does the care/knowledge of the condition differ depending on where you are from?
Thanks x x x
I’m originally from Toronto, Ontario, Canada. I currently reside in North Bay, Ontario. I was diagnosed and had my surgery in Calgary, Alberta.
Central Coast ,Sydney,Australia.Doctors with Chiari knowledge are very,very few.Some good surgeons but very conservative about surgery,even if your symptoms are extremely pronounced.
Hi I am from South Wales UK I am due chiari surgery any day have had my pre-op just waiting for a date, I am going to the University of wales Hopital Cardiff, was misdiagnosed and waited for 1yr for a " disc op" saw the surgeon who said it was my Chiari causing my problems so now waiting, xxx
Thanks for the replies. Seems like we are in the same boat wherever In the world we are. I find it odd that so little is know but the Dr at the hospital so easily diagnosed it??? Then left me with no follow up, no anything, lol
X x X
Hi! I'm in USA...Houston area. I need to find a specialist, one who knows/understands Chiari well!
Hi, I am from Gauteng in South Africa. My NS is just a 10 minute drive down the road from me. However, no matter how good my doctors are, I find that we have to take responsibility to expand our knowledge and know what to do or not to do. Get to know all there is to find out as not one doctor can fully tell you which symptoms come from Chiari and which not. My NS said I will have to listen to my body and discover what I can or cannot.
Hi Ferrie,
I am the mother of a young lady..who had chairi surgery two years ago...did well until six months ago and pain and other symptoms have return...Is it possible to get the name and email of your NS?
With thanks and hope, Theodore
flerrie said:
Hi, I am from Gauteng in South Africa. My NS is just a 10 minute drive down the road from me. However, no matter how good my doctors are, I find that we have to take responsibility to expand our knowledge and know what to do or not to do. Get to know all there is to find out as not one doctor can fully tell you which symptoms come from Chiari and which not. My NS said I will have to listen to my body and discover what I can or cannot.
Hi Theodore,
My NS is Dr Wiebo van der Meulen
neuro@workmail.co.za
Telephone 27 11 869 4550/1
All the best
theodore45 said:
Hi Ferrie,
I am the mother of a young lady..who had chairi surgery two years ago...did well until six months ago and pain and other symptoms have return...Is it possible to get the name and email of your NS?
With thanks and hope, Theodore
flerrie said:Hi, I am from Gauteng in South Africa. My NS is just a 10 minute drive down the road from me. However, no matter how good my doctors are, I find that we have to take responsibility to expand our knowledge and know what to do or not to do. Get to know all there is to find out as not one doctor can fully tell you which symptoms come from Chiari and which not. My NS said I will have to listen to my body and discover what I can or cannot.
I live in the US near Memphis, Tennessee. My neurologist is pretty good, but she seems to treat me more for the migraines than anything else.
My name is Elaine. I am from Seattle Washington. I just found this support group. I had chiari decompression surgery almost 3 years ago.
I would like to say there is a good doctor in Houston, but I never got to see him. I was "presented" to him from his nurse "quacktitioner." So, I drive down to San Antonio to see Dr. David Jimenez. He is fantastic!
-M
MrsN said:
Hi! I'm in USA...Houston area. I need to find a specialist, one who knows/understands Chiari well!
I am in the Dallas, TX area. I had my surgery Nov. 4, 2013, in San Antonio, TX.
Hello,
I'm a Mum of a daughter who had chiari surgery two years ago. I live in Vermont, my daughter lives in Connecticut..any one out there in the Hartford CT area?
I’m in ohio
I from Portland OR-USA I have a great Surgeon who is doing my surgery on June 17th. When I first was diagnosed none of my doctor thought my headaches where related to it. Since then( about 5 years later) I got a new dr. who new what Chiari was and sent me to a new neuro who thought they were and sent me to get a new MRI. Then from there I was sent to my surgeon who ordered even more test. Then confirmed that surgery was need. I have seen that more and more doctors in my area are getting to know what this is. But my sister who lives 3 hours away is finding it hard to find a doctor who will listen to her about it.
Hope all goes well for all of you!
I am in the Dallas/Ft Worth area, Texas and was diagnosed in February 2014. My neurologist does seem to be pretty knowledgeable about Chiari and my PCP even has some Chiari patients and has a basic understanding of what it is...
Scout
Hi Scout,
Who are your doctors in the DFW area, if you don't mind my asking? I am having a difficult time finding the right team of docs in this area. I seem to locate the most unaware physicians. It is quite frustrating to search and search to no avail.
-M
Hello, I’m from spokane Wa USA. We have 1 surgeon but no one takes care of the whole picture. And when you tell these people what you have they look at you like you have several heads.
Hi, Weeblevii, sorry it took me time to get back to respond. My doctors in the DFW area of TX are the Neurology Specialists of North Texas in Bedford close to Harris Methodist Hospital in between Dallas and Ft Worth. My doctor is Dr. Valery Lipenko. There are 2 other neurologists in the practice. I am newly diagnosed (February) and only now have realized that I I am pretty lucky from what I have read in the response that I have received from my neurologist in that he showed me the different shots of my MRI on the computer explaining what Chiari is, what my brain should look like, where it should be , and of course pointing out where it is…very evident once I understood. Of course at that time I had never even heard the word Chiari before. He also did a thorough exam asking many questions regarding symptoms that I had but didn't realize were related…sent me for an additional MRI of my spine which at the time I had no clue as to why until I went home and started reading (I have no spine problems fortunately), sent for more labs, EEG (I was showing signs of some seizures)…and more. I have been back once for results and now go back later this month for followup to see how I am doing. My symptoms are still somewhat mild compared to many…although this has still turned my world upside down. So I am trying to adjust to this "new normal" and decide how I will manage and what is the best plan for me. Good luck in your doctor search.
Weebleviii said:
Hi Scout,
Who are your doctors in the DFW area, if you don't mind my asking? I am having a difficult time finding the right team of docs in this area. I seem to locate the most unaware physicians. It is quite frustrating to search and search to no avail.
-M