hi merlot..so sorry to hear of your awful plight......many of us here have been thru similar situations in search of a dr. that could actually help us. so first off, know you are not alone in your struggles!
the first question and the most important one in my mind, have you ever been to a chiari specialist?
Hi and welcome to the Chiari forum.
Wow....may I ask how long since u had the MRI's and been to TCI?
Ur symptoms sound so much like the issues a chiarian has, but u also have such degeneration of ur cervical spine if it looks like a 70 yr olds.
U also didn't mention if u had a CINE MRI...if u did I overlooked it...sorry...but dimminish CSF flow and symptoms and overcrowding r more a rason for surgical intervention....just a mild herniation is not.
Did TCI talk to u about fusion?.....or nething else other than the surgery u just had.
I can only assume u were checked for other related chiari conditions like syringomyelia, tethere cord...EDS....????
Also has ne one mentioned Dr Arnold Menzes?
"selma"
oh my goodness!!!! i thought i was having an ok day until i re read your post!!! how i missed that you had been to tci is waaaaaayyyy beyond me! i think i will retreat to a corner and sit there for a while until my eyes and brain are on the same page! i'm soooo sorry merlot! i'm usually just a bit more observent than this! so now....i will run and hide, tail tucked between my legs, brain falling out almost yet another year older...... : (
blame the brain hemorrhoid for that : ) it works for me when I make simple mistakes and get corrected by a four year old LOL
anyways. I am so sorry merlot that you are suffering like this. I live in ohio and had not heard many good things from the Cleveland CLinic's Neuro dept. Glad you pursued other avenues. One thing I have learned from here is that it isn't the length of the Hemorrhoid it is the back up of CSF did they test you for this? DOnt give up there maybe other ways to help with symptom relief will help you.
welcome to this group they are all a great suppot.
Angie
I have heard the chiropractors can cause Chiari symptoms to be increased and possibly even lead to great herniation. anyone else hear about this ? Did your Chiari doc mention any of this too you?
I've heard that chiropracters are bad for Chiarians. Go to them for lower back but don't let them touch above the shoulder blades of a Chiari patient. Unfortunately, if the Chiari is undiagnosed, damage can be done without knowing.
I am so sorry for what you are going through. You did go through so much and nothing yet worked on your situation. I think you need to try to go to specialist who will focus on your symptoms. I have gone through a lot not like you but finaly I found one Dr who was willing to review my conditions. It took him almost 5 months to study my pain and find out I will need a surgery to fix it. Most of your symptoms sound like caused by Chiari, I sent you a website for Dr. Nagib in Minneapolis, he is the best and you will be suprises by his foundings. He doesn't support surgery unless it is necessary, he will take time to review your findings and suggest you what will be the best. I have my surgery planned for next week. Good luck !
Shortcut to: http://www.neurosurgicalassocs.com/providers.cfm/pid:563/Mahmoud_Nagib/index.htm
Minneapolis
Phone 612-871-7278
Fax 612-863-8531
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Map/Directions
Mahmoud Nagib, M.D.
Biography
Dr. Mahmoud Nagib received his Facility of Medicine degree at the University of Cairo, Egypt. He completed his residency in the Department of Neurosurgery at the University of Minnesota. He was board certified in Neurological Surgery in 1985 and Pediatric Neurological Surgery in 1994, with recertification in 2006.
Some of Dr. Nagib's subspeciality interests include:
Adult, pediatric and neonatal neurosurgery
Skull based surgery - adults and pediatric
Acoustic Neuromas
Microsurgical approaches of the third and fourth ventricle
Congential abnormalities of the spine
Cervical Arthroplasty (Artificial Cervical Disc Replacement)
Dr. Nagib is the president of Neurosurgical Associates, Ltd. He is a clinical assistant professor at the University of Minnesota, a staff neurosurgeon at Abbott Northwestern, Children's Hospital and Clinics, Minneapolis, and Fairview Southdale Hospital and an associate neurosurgeon at Hennepin County Medical Center.
Since 1991, Dr. Mahmoud Nagib has been listed in the Mpls/St.Paul Magazine as a top Neurosurgeon and in the Castle Connolly's Guide for the past seven consecutive years as one of America's top doctors.
Dr. Nagib is a member of the American Association of Neurological Surgery, Congress of Neurological Surgeons, American Society of Pediatric Neurosurgery, French Society of Neurosurgery, International Society of Pediatric Neurosurgery, Fellow of the American and International College of Surgeons, Minnesota Neurosurgical Society, American Medical Association and Pediatric Section of American Association of Neurological Surgeons.
Dr. Nagib performs surgery at Abbott Northwestern Hospital, Children's Hospital and Clinics, Minneapolis and Fairview Southdale Hospital.
Dr. Nagib joined Neurosurgical Associates in 1983.
Click here to see Dr. Nagib featured in a WCCO Story
I have Chiari and recently had decompression surgery. I have a list of "do nots" for Chiarians. Chiropractors are on there for sure.
I was diagnosed with a "slight Chiari malformation" 15 years ago and told we would treat the symptoms and it was no big deal. I suffered horribly for 15 years and also tried chiropractor, Neurostimulator with Dr. Mogilner, many, many, meds, etc. I finally saw a Chiari specialist back in June and I recently had my decompression surgery in November. I'm still recovering but I have hope for a better life now. Size of herniation does not matter! I see Dr. Michael Rosner in NC. Try to get to a Neurosurgeon who specializes in Chiari. They have a list somewhere on here with that info.
Hi and welcome to the Chiari forum,
The members you addressed your comments to have not posted in a while, they are not active members at this time.....you can send them a PM ( private message) which will generate a e-mail notifying them someone is trying to make contact.
You can also create a new thread and address the current members.....
We also have a list compiled of what not to do for those with Chiari and Syringomyelia.....
Do you have any other related conditions?