I haven't been on here in awhile. I have been symptomatic and diagnosed with Chiari since Nov. 2012. After seeing several doctors and specialists, we are at the "wait and see" period, in terms of whether or not to have surgery. I was really gung-ho there for awhile there. Trying all kinds of treatments and meds for the symptoms. I was doing lots of research and came on this site regularly. I kind of ran out of steam. The symptom list is growing slowly but surely. I'm trying to be patient and learn to live with the symptoms. But I think I need to get involved again.
This morning I watched an online lecture from Dr. Oro (the chiari specialist). He was saying that there are many other conditions that mimic Chiari. The people that continue to have headaches and whatnot, after the surgery, have to have something else instead of or in addition to, Chiari. What do you all think about that? It was a very good video and I was able to learn a lot about similar causes to our condition. I highly recommend it.
I am pretty convinced from what all of my doctors and my research have come up with, that Chiari is the cause of my symptoms. There still are some more tests that need to be done. I really think that I need to have a CINE MRI done to check my CSF flow. But my Neurosurgeon said that it wouldn't matter, no matter what the results were. He doesn't think I need the surgery at this point. I wish I could afford to go to one of the Chiari centers, but that's not going to happen any time soon. I'm thinking I should probably try a different surgeon. My Neurologist also said (at my last visit) that my case was one where my symptoms are from a combination of the chiari and "my emotions". Like I'm making this up?? Anyone have any suggestions, words of wisdom, etc? I could really use some support about now. Thanks!
Hang in there, and you're not alone.
Hi, Im Geoff a mod here, and I just took ur video and put up under Videos Tab for others to see. It is a good one I saw, and you should be checked for all those things. Some like EDS and CCI especially before any surgery, as they often cause failed surgery. It's not in your emotions, although it's understandable to be sressed to the max. Any NS you're approved for, go armed with info. even if you can't go to a Chiari center. Good luck,
Hi.My NS also said that Chiari ,(6mm) was not responsible for my problems and surgery was therefore not an option.Because a connective tissue disorder is also involved,I can understand his reasoning for not offering surgery,however when I see my symptoms that are typically CMS,I can`t help but think that surgery is my only way of having some quality of life.It comes down to which condition is responsible for what.This type of interaction between the two disorders,EDS and CMS,would make it very difficult for a doctor to be confident that surgery would help, and I too have the same doubts.However ,if this is the case, then what do I do.In Australia it is very difficult to find even a PCP that understands, and can also manage CMS,so I am trying to find some way to come to the United States to find help for myself,two adult children and two young grandchildren who also have EDS but not confirmed Chiari,but they too also show many symptoms of the latter as well.I am telling you all this because I think it is very important to know if you can rule out any other condition that can mimic Chiari and add to it`s effects.Once you have,I think you are living in the best place in the world for getting treatment for this disorder.I have seen the video you mention , and it has helped me get a better perspective on things.I know you are disheartened by your situation, but you are in the right country for help,if it is affordable.Money is a huge problem for a lot of us ,so maybe somebody can point out the resources available to you.Get as many opinions as possible,until one sounds right .The people on this support line have helped me a great deal and I am sure they will do the same for you.Don`t give up, and gain as much information as you can before making a decision.This all goes without saying,but I hope in some way it helps.Lots of luck with getting what you need,there are many more of us out there.
Best Wishes for you.
Please know CM and symptoms can be very confusing even to many medical specialists. There are several related disorders that a fairly large percentage of Chiarians develope also. Most develope because of CM & some are also genetic, so there is some debate on what came first the CM or additional disorders. I personally think all my related disorders developed after I became symptomatic with Chiari. There are incredible NS in every state. Some Chiari Institutes are great but there are also many Chiari experienced NS. I always recommend Members start close to home then consider other options if you have a situation that only specific NS are experienced and specialist treating. If you would like we can help you get a second opinion. If you had a CINE MRI & had CSF blockage it would warrant surgery to correct. I even know Chiarians that have small herniations and considered CM0 that in fact needs surgery because of the type of their herniation,not the size. I would really recommend a 2nd opinion. Never doubt the way you feel. No one can judge that but you. We do though understand. You are not alone.
Hi Kmelodya! God bless you. I am on the same exact path that you are on. I was diagnosed early last year following an accident in the fall of 2012. This cine MRI is very helpful because it helped determine that I have no csf flow along the back right side of my head. Obviously I can understand we go through periods where we find some relief then all of a sudden new symptoms pop up. It is important to know how your CSF flow is going because this will determine whether or not it will affect the possibility of having herniation in the spine which is the formation of a syrinx according to my neurosurgeon. I have made no decisions now. I am still going through the research and learning and trying to figure this out phase.
For me the frustration is the pain pressure and swelling that I get on my entire right side of my face head & neck, It feels like a throbbing bad toothache that comes and goes and just takes over the inside of my face and neck. I take advil and I try to eat as healthy as possible but like a friend said it’s a structural problem not a nutritional problem, but good nutrition does help for inflammation.
At this time I’m trying to rule out all my symptoms I have seen close to 20 doctors already luckily I have a good neurosurgeon that is very conservative, kind hearted and tells me I am not crazy - thank God for him.
I am right now trying to figure out why it feels like my lymph nodes and everything inside on the right side hurts and swells so bad. My MRI showed a small cyst so I am not sure what it is and what the next steps are but I am looking for a good ENT or lymph node Dr. other than my endocrinologist who blew me off about the Chiari.
Luckily I have a great job, a husband and God in my life which keep me going and now I will be a grandma this year so that’s very encouraging however there’s nothing worse than not having control over how you feel and it’s disabilitating especially when your limbs go numb on you. Any suggestions,ideas or advice - I am open. Thank you. God bless you all!
I would definitely consult with another neurosurgeon that specializes in Chiari and have an MRI done to see if you have a syrinx.
Thank you all so much for your support and wisdom. I definitely will be looking for another NS soon. This site is so wonderful! I am grateful that we have a place where we can come for information and support!
Putty, I hope that you can find a good doctor soon. You are right, we are lucky to have so many options here in the states. I have read about many others in other countries who are in the same situation as you are.
I hope to be able to gain back some kind of control over my situation sometime soon. We have to be our own advocates. Nobody else will do it for us! Thanks again and God bless!
Jozy, God bless you too! It sounds like you are on the right path. I would say that you should keep trying more doctors about your lymph nodes and swelling, just to be sure. I have had a lymph node on the right side of the back of my neck that has been swollen for over a year. It must be on a nerve too, because any time I push on it, pain radiates to my head. Strange. My doctor pretty much dismissed it. Ahhh, the mysterious human body, right?
I had the surgery and am very pleased with the results. It is important to get the extra screening for EDS and such because that seems to play a huge role in whether or not surgery will be helpful to a person. It sounds like your NS isn't taking you very seriously. I would seek a second opinion and press for the CINE MRI! Good luck! :)