Hey. I’m just curious if anyone else has herniation like mine. Mine is 24mm below the foraman magnum. I know that is quite low and want to speak to anyone with a similar case. I still need to have another mri to confirm a syrine. I understand that the herniation doesn’t necessarily mean my case is “worse” than anothers. I have been advised to have the decompression surgery but I’m getting more nervous about the possible outcome the more stories I read. Some have had surgery with a “small” herniation and do great and others do poorly; some have “larger” ones with the same results. I guess I partly want to know if it.is kust ridiculous to even think about what could happen to me if I dont have the surgery. If anyone has a similar herniation, with or without the surgery, please contact me. Thank you so much! Be safe!
Thanks. I hear what you are saying. That’s crazy for you! I know there’s people in my life who will act like tbi is no big deal too.I’m just starting to freak a little because once they start cutting, there’s no going back.
Randi,
I agree with everything Emmaline said. 24mm is very substantial. Mine was 14mm and they never gave me a choice. My symptoms had gotten so bad and the herniation was so large they schedualed me asap. Keep in mind that the herniation isn't going to go away by itself and a piece of your brain is outide your skull. It is causing pressure on your spine. brainstem and brain. That being said some people choose not to have surgery although I wouldn't think with the size of your herniation there would be any/many. It is a serious surgery and it takes awhile to recover from but it is a very safe surgery. Emmaline is right the people that have had great experiences don't need a support group. Most times people join when they are diagnosed hang around till they get their surgery, post a little afterwards during the most dificult time and then they are off living their lives. It is normal to be scared and the decision is not to be taken lightly. Everyone has to decide with their doctor what the best course of action is for them. The most important choice to make is the choice of doctors. You want to find one that does a lot of decompressions. That will give you the best outcome possible. We are all here for you no matter what.
Wendy
Thanks. I’m trying to figure out a doctor. I’m in Pa and was recommended to Jefferson hospital. This doctor does 10-15 a year but he only operates on the 5% who are in serious need. So, I suppose his numbers might be higher if he was less discriminate? I am still trying to get another opinion, not for whether I need surgery but who to choose.
Thanks.
Randi,
The World Chiari Assoc has a patient refered doctors list. You'ld have to do some of your own research on them too but here is the list. Besides the doctor ratings sites I have found it somewhat helpful to Google the doctors name along with Chiari and sometimes patient reviews or stories will come up to give you a little more info. Also Tracy the Moderator maybe able to give you a few names of doctors near you. She has a lot of medical contacts and is great. I will let her know.
http://community.pressenter.net/~wacma/usdocs2.htm
Wendy
Thanks. I’ve tried googling but don’t find as much info as I’d like. Thanks for the link!
Randi,
I personally know many Neurosurgeons in Pa.,Maryland, DC & Va. area. I also have had a very challenging Chiari journey. I know Wendyanne sent you a list of Chiari experienced NS's. If you would like I can look over your list & give you some recommendations.
Tracy Z.
I just read through that list & have a great recommendations. Dr. Jon Weingart at Johns Hopkins is great. That list is much smaller than I thought it would be. Please send me a Message & let me know what specific area you are looking in.
Tracy Z.
I am in Chester county Pa. The NS I just saw was Pascal Jabbour from Thomas Jefferson Hospital in Philadelphia. Is that what you keant by area? Sorry, I’m having a slow thinking day and a colicky baby on my lap. The sounds are fabulous for my head!
Thank you. When you say you don’t recommend the other NS, do you means the Maryland one from the Chiari list. Just checking that you didn’t mean the one I already saw. Every bit helps. I had no idea there are so many choices and yet it seems like so few really get how involved this problem can be to solve. Thank you.
Hi Randi,
I was diagnosed in 2008 with a 25mm herniation and a syrinx at the very top of my spinal cord in the brainstem area. I am also hydrocephalic. I was decompressed in 2008 and also had a VP shunt placed the same year. I was told that my herniation was very substantial.
Carla
My herniation is 25mm, I was diagnosed in March this year and have what appears to be a 1cm syrinx at the top of my spine in the C3/C4 area. I just had follow up MRI's last week before I see my NS next week. There has been no change since March.
When I saw the NS for the first time in March he went over my symptoms and advised against surgery at this time if I felt that I could handle the pain. I feel I have a high pain tolerance level (2 children with no pain relief) and since I am petrified about surgery I have decided to hold off for now. I see the NS again on Tuesday, even though there has been no change on the MRI, my symptoms do seem to have been getting worse, notably tingling and numbness in hands and feet. I will let you know what he says.
From what I gather though, a NS will take your symptoms into consideration as well as the herniation before recommending surgery - it is a huge surgery!
Feel free to contact me.
Thank you! I’m doing the best I can to find out what I can. I’m still trying to get insurance so I can seek a second opinion, hopefully from someone more experienced with Chiari. Thank you!
Thanks guys! I really appreciate all the help and advice. For some reason I’m having trouble responding individually right now. But, pretend this is a personal thank you! I have a bundle of little people and the choice of who to choose as a NS, where, when and the logistics of replacing one mom for at least a week, is daunting! Thank you for being here for questions and support!