I'm totally confused. I know that there are Chiari centers and am well aware that they do a lot of Chiari patients but I'm not sure why so many people on this forum insist on going to a doctor that is specifically listed as a Chiari specialist. It seems that a lot of folks so insistent on going to a Chiari center are really really sick and not in great shape at all, or either have not been decompressed and don't really know a lot about Chiari. I really wish that this support group had a lot of folks on it that had been miraculously decompressed at a Chiari Center and fully recovered that could give insight as to why there treatment was so good. I keep looking at profiles to try to find the person on here who went to the awesome Chiari specialist, got decompressed and is actually okay. Please message me. I h ave a kid with a Chiari that may someday need to be decompressed. I wasn't planning on taking her to a Chiari center. I was planning on taking her to the most topnotch neurosurgeon that I can find because most of the highest rated neurosurgery centers are not actually considered Chiari centers. I am seriously trying to figure out why someone would choose to go to a Chiari center to get treated as opposed to an excellent neurosurgeon who treats Chiari patients. I would think that maybe they are really wanting to go to a Chiari Center because they personally know other folks who have went there and everything turned out awesome but then I think that if that were true then why would they be on a support group saying that they don't know anyone else with a Chiari. if I was really sick with something and I had never done anything that made it better then I would probably reevaluate what I was doing to see if I could first make myself at least a little well before I told anyone else not to go this place or that place. I'm trying to figure out how a physician even becomes a "Chiari" specialist other than by self-proclamation or by the types of patients that they choose to treat. I have never been to a neurologist who did not understand what a Chiari malformation was. I have been to some general practitioners who didn't know much about it. I really want to know what exactly makes a doctor a Chiari specialist besides the fact that they work at a Chiari center. It worries me that so few folks giving so much advice about ignoring this doctor or that doctor are folks that are really really sick and are not able to figure out something to make themselves well. I also worry because I read post after posts of things that are really important thinking wow, that person needs to tell their doctor that or why didn't that person's doctor explain anything to them. I don't want to make anyone really upset but the truth is that Chiari center or not, depending on what type of damage you have then you may or may not have a total resolution of symptoms. You may get dramatically better but sometimes even if you don't then it isn't your doctor's fault. I hate to hear folks blasting doctors that are not Chiari surgeons especially when those folks themselves are sick. A chiari surgery is not the most complicated surgery out there and some of the symptoms that I read on here are pretty bad to where folks need treatment asap. I kind of get the impression that if a doctor doesn't tell you that he can resolve everything or if everything isn't resolved that folks thinks that was an awful surgery. Some surgeries are awful. I would just hate for any newly diagnosed Chiari patient to think that the only place they can get treated is a Chiari specialist. It makes no sense to me. Decompression is hard if you have to go that route but it can be a blessing. However when they cut the muscles that hold your head erect then common sense should dictate that it takes awhile for that to heal. I really think that there are places out there that are probably very good places to treat a Chiari patient but that we get so desperate for relief from our symptoms that we honestly put every ounce of faith in getting to that magical neurosurgeon that understands so that he can heal us. If I got on this blog newly diagnosed and I had so many folks telling me not to go to this doctor or that doctor because they won't understand me then I would be really freaked out and more scared about Chiari than I would be just learning to deal with the new diagnosis. If someone can tell me where to look to find out exactly how they determine that the Chiari centers and the self proclaimed Chiari specialist( which is pretty much how I think that designation comes about me) then please help me out. I have a kid that might need to be decompressed someday and I intend to find the best place out there to go. However, I really want to here from folks who have personally been there, had good experiences and actually recovered. I pray for you guys all the time because I understand your pain. I just don't understand some of the logic and I have been all over the place trying to research and back up what you are saying and I just simply can not find it anywhere. Please fill me in. I'm been around the block too many times to just accept things as being awesome because it is listed somewhere as being awesome. I had a posterior decompression in 1995 and I came to this sight because I assumed that in the last couple of decades that things would be new and improved from what they were almost 2 decades ago. So if the Chiari centers are doing essentially the same surgery that other neurosurgeons are doing then what exactly makes them more special. Are they nicer to Chiari patients and don't try to treat us like we are nuts? I don't know. Please someone help me try to figure this out. I know when folks are really sick they do whatever they can to get better. I do the same thing. I want to know where the best place in the United States is to have Chiari surgery and exactly why you know that personally. Sorry if I make any one mad...that is not the intent. The Chiari decompression is not one of the more complicated neurosurgeries and there are a lot of good doctors out there who treat Chiari patients. I also hope and pray that anyone who has a major head injury with some sort of significant pain goes and gets it checked even if they have a Chiari. I read a lot of posts folks asking what they should do about this or that and I hope that they realize that they really need to go ask their doctor those questions, and also hope that they understand that if someone is in really bad shape his or her self that that person might not have the best advice what to do to make things better. If you have Chiari then it can be managed and treated to where a person can live a functioning life. True, you may have some downtime, pain and immobility. I just don't want anyone who just got newly diagnosed to think that this is all bad news because there are so many horror stories. So many of the folks with Chiari have other issues,illness, or past trauma that play an equal part in their incapacitations, so when they are suffering from Chiari then they are actually suffering from the cummulative affects of Chiari and everything else that is wrong with them. For the most part, everyone of us will get better with proper treatment. Some of these extremes symptoms in some cases are things that really should be checked beyond the Chiari. I realize that I will probably have to exist this group after this post because folks won't like me but I hate to see folks suffer, especially when I know personally how bad it hurts, and I want every single one of us to get better. I would advise anyone dealing with Chiari to have a good neurosurgeon, neurologist and a good PCP because each of those doctors is equally important in your care. If you are a person who does not think that is important then you may need to rethink why you personally are so sick. I actually got pretty much okay with respect to the Chiar and Syrinx. I just have some residual nerve damage that unfortunately can not be repaired no matter where I go. I know that because I understand the anatomy and physiology behind what is broken.thanks
Dr Ryken with Iowa Spine and Brain is not a Chiari specialist but seems knowledgable but the NL DR Goel in his office seems clueless on it
What I have gathered from talking to alot of Chiarians in the last 7 months is that alot of NL's and NS's just don't know what CM is or know enough about it to really be able to treat it correctly. Take me as an example... The NL that diagnosed me told me that no one would treat me until my symptoms were to the point that I was staggering around like a drunk person. Then I went for a second opinion and that NL didn't believe CM existed and said all of my symptoms were from other things and wanted to put me on a medicine for my HA's and then refer me to like 4 different doctors. I finally got her to give me a referral to a NS. Now my surgery... The only proper surgery for CM is posterior fossa decompression which consists of removing a piece of the skull and opening the dura and placing a patch, both of which make more room for the brain. My NS did neither. So I am gauranteed to have to have another surgery. There is no cure for CM. Plain and simple. Any where that you look, that's what you will find. The surgery is only a treatment to stop the progression and if you have it you may have to have another one down the road. If anyone thinks that they are going to have surgery and walk away cured and never have to think about it again they need to do their research.
I am one of the ones that has been on here complaining about my docs b/c they are horrible. Plain and simple. They've lied, witheld information, and my NS still hasn't returned my calls and it's been 2 weeks and I've called every other day.
But I do hope that you don't leave the group. You have been helpful to me since I joined and I have appreciated your advice, input and insight. And if anyone gets mad about what you said, then they need to put on their big girl panties and deal with it. This is a group where we come for support. We give our advice, our opinion, our experinces. This is yours.
I hope you and your daughter are doing good and have a good day.
We are patients helping patients…We are NOT doctors. We offer support to each other and share our experiences to hopefully help others. There is no certification or degree that makes a NS a Chiari specialist, but there are definitely ones that are more knowledgable than others. For example, a well respected NS in my area diagnosed me with Chiari and Syringomyelia in October 2010. He said none of my pain/symptoms were caused by it, so he wanted to wait and re-evaluate in two years if it started to cause problems. He said if it did cause problems, he would do a shunt for the syrinx. I got progressively worse over the next year, so I started doing my own research. It became blatently clear how little my NS knew about CM and SM. From everything I’ve read and heard, a shunt should not be the first course of treatment in my situation. While doing my research, I found my current NS. He is VERY knowledgable about Chiari. He is not part of a Chiari Center. He is on the board for The Chiari & Syringomyelia Foundation and he heads many educational seminars about Chiari. He doesn’t JUST deal with Chiari either. He is the Chief of Neurosurgery at Harborview, Seattle Children’s Hospital, and he is a Professor at UW. He is professional, so he didn’t bad mouth my other NS. But, he did say that the shunt was the wrong course of treatment for me. He also said that my case is pretty urgent and needs to be treated A.S.A.P. There are a lot of excellent doctors out there that are more than capable of handling our cases, but there are others out there that lack sufficient knowledge and base their decisions for treatment on outdated information. The lists of doctors that we refer people to are based on patient recommendations. This is just a tool to help those looking for an experienced NS. I’m sure there are a lot of wonderful and competent doctors that aren’t on these lists. We all have to find a doctor that we have confidence in…It is a personal decision. The book “Conquer Chiari” has a lot of helpful info about finding the right doctor for you and explaining your options. The only doctors I would say to stay away from are those that discourage getting a second opinion. Also, there is currently no cure for Chiari…surgery is a treatment only. Any doctor that says otherwise is not well informed. There is no reason that you have to leave this group. You are free to have your opinions, whether everyone agrees or not. You have shared great advice and helped lots of people here. I wish you and your daughter nothing but the best!
My PCP i trust completely. Let me give you a run down. My very first visit to him last summer for severe shoulder pain (chances are now he says, he even admits it, is connected to the chiari) he looked at my forehead and said before you leave my office i am going to biopsy that bump. I looked at him like he was insane. I had the bump since high school and mind you i was 35 at the time, come to find out it was skin cancer. In Nov of 2011 i went back with the same shoulder pain that i went to see him with in the summer and he ordered the MRI...found the buldging disc's. Got me in to see Dr Ryken. My PCP has been educating himself on chiari, shit even asked me for links for info so he could look in here, look in other sites you name it. From my experience so far, except the NL the DR's and surgeons are great...the NL hell no (I'm going to request a new one). You need to have be able to understand what their talking about, be able to talk to them, they have to talk to you, not at you, you are a person not just a number
I sent my MRIs to the Mayfield Chiari Clinic because I'm in rural WV, both NL I've seen here (one at WVU which would be the best hospital in WV) says chiari has no symptoms and I have chronic fatigue syndrome. I have been unable to get a referal to a NS so I didn't really have any other options. It's not so much that I think Mayfield can magically cure me, it's that I am not getting any better. My doctors won't do anything to treat my headaches, neuropathy, or fatigue. Since they won't refer me to anyone I had to self-refer. The chiari centers will allow you to do that. Since almost no one in WV has experience with Chiari I feel better knowing that these NS have seen numerous patients with this and are in a better position to tell me what my treatment options are.
Hi Poptart,
I was sent to Dr. Peter Janetta in Pittsburgh because he is the best NS in the U.S. He developed most current Neurosurgical Techniques & has started numerous Neurosurgical Departments , and has done 100's of studies found in the National Institute of Health (www.nlh.gov) . He lectures all over the world & is well known by every NS in the US. I was sent to him from UVA Adult Neurology. Never once was I encouraged to go to a Chiari Institute. I was sent to the Best & he saved me from becoming a quadripledgic. I know it's hard to know who is great & who actually knows what they are doing. The general rule is you want an experienced NL & NS that has treated at least 100 CM patients. There are Chiari Specialists in every major city & teaching hospital. I had a very advanced situation. I had seen 52 specialists to get to the right one & had Blue Cross and Blue Shield as an employer and used all their resources. Everyone wants to trust their Dr's.....It's the way we were raised. I am 44 yrs old & my mother worked with 16 other physicians and to this day I would see any of them and never question their treatment. Unfortunetly they are all retired now.
The surgeon we used for Julia's(she is 10) surgery is tops at inoperable brain tumors. He does deal with Chiari but may not be considered a chiari specialist. We are in NY and the Chiari center is 10 minutes away from us. We chose NOT to go to them for alot of different reasons but mainly because you are in a group practice. That has never worked out for us. Julia's doctor was Dr. Wisoff, head of pediatric neurosurg at NYU. He is incredible but again, not a "chiari expert!" You have to go with your gut when you meet with the surgeons, for me it was Dr. Wisoff's eyes, he has kind eyes!
I'm living proof that you don't have to go to a chiari Center to get a good, experienced Chiari doctor. I had an excellent doctor here in the Washington DC area. (If I needed a pediatric neurosurgeon, I would go to Dr. Ben Carson at Johns Hopkins Hospital; I know a couple of kids being treated by him for Chiari). My thinking when I needed the surgery was that I wanted to find the best. After all, f I needed to have my electricity fixed, I would be looking for a good electrician; if I needed my plumbing fixed, I would be looking for a good plumber, and likewise, when I needed some work done on my brain, I was looking for a good "brain" doctor. Since I had to have chiari/basilar invagination/cervical fusion surgery, it seemed to make sense to me to look for someone who had experience in doing chiari surgery. Since the brainstem controls every function in the body, I don't think it's wise to have someone who doesn't know anything about it or never done work in that area. If something goes wrong the stakes are pretty high. I didn't consider going to the closest Center to me because I knew someone who had multiple surgeries there without much success and we had several doctors in the DC area who do Chiari surgeries. Could any neurosurgeon who's never done it before do it. Of course; at one time even an "expert" would have had do the surgery on their first "brave" patient. So, lack of a lot of experience doesn't necessarily equate to a "bad" surgeon anymore than doing a lot of the surgeries necessarily makes one good. You would hope though that having a lot of experience would mean improvement in their techniques and their exeriences as they hone their skill would mean more successes. I just really didn't want anyone messing with my brain who didn't know what they were doing and would have been "practicing" on me. I think a lot of horror stories we hear about the chiari surgeries come from neurosurgeons who are in over their heads with that type of surgery. We all have to do what we feel comfortable with and some of us feel more comfortable finding a neurosurgeon who is knowledgeable in the type of surgery which we had to have. I'm not sure there is any one best place to have the Chiari surgery. My doctor did my surgery at a new brain and spine center near where I live. I stayed in post opt the whole time I was in the hopsital and I got excellent care. Different people have different problems and react differently to surgery and recovery. When I first went on a chiari website after I was diagnosed, It scared me, bnecause I read so many horror stories. After I thought about it and put it in perspective though, I realized that a lot of them came from inexperienced doctors doing the surgery and the fact that most people who have a "good" result will most likely resume their life and not take the time or feel the need to stay on a support group. This group is different, from my experience on here. There are a lot of positive people on here who take a lot of time to offer support and understanding to other. The perspective of what a good outcome from the surgery is will vary, depending on whether one goes into it expecting a "cure" or recognizing that there is no cure and that surgery is a "treatment". I understand that sometimes it is very easy to blame everything on chiari because the symptoms of chiari are so far reaching and so many. Also, we have to understand that there are varying degrees of Chiari and what works for one may not work for someone else. I feel that this in this group, we won't of course have all the answers for anybody, especially specific ones and certainly not which doctor is best for anyone. Hopefully though, we can offer support to help those who might not be faring quite as well as we may be, and help them emotionally as they go through this journey, which is harder for some than others. Part of that I think is knowing what worked and where and then each of us must do our own soul searching and looking for the right place for us to get the help we need. We won't think the same; after all everybody's opinion is based on their own experiences and their own paradigms of what is right and wrong. It doesn't mean that any particular person is right or wrong. It just means that people think and react differently.......and that's o.k.
So, all you can do is take it all in and then do your homework as best as you can on researching the doctor or hospital. You can ask for statistics on how many surgeries they've done, what their success rate is, who is responsible for aftercare, and how followup problems are taken care of, and other concerns you might have. Then go with what feels right to you. I know it's difficult....after all Chiari and it's problems isn't easy. I'm fortunate to have found a great neurosurgeon who is also a kind, compassionate person. When he said a prayer for me before my surgery, I felt like I was in the right place. I did great with my surgery. When I woke up the next morning for the first time in a long time nothing hurt. And, as you can see from the pictures on my page, he makes a pretty nice incision too.....just saying!! I hope you find someone like that too.
Hugs
Shirley
Pop Tart - this is just the way my house views it - We are blessed!! Lily has an amazing NS he is out of a local childrens hospital is she 100% better - No . Is she better than she was - Oh heck yes. We were told from the get go though that not everyone gets immediate result or any results. It's a crap shoot. You just have to have faith and I think what most people say (or what they have said to me when I first got on here) is if you don't have faith in your doctor - if he does not feel write to you - go else where. You have to have faith in them this is to important not to.
I'm not giving up but it's tough. I feel pretty certain nothing else could be causing my issues. I've seen endocrinologists, rhuematologists, neurologists, immunologists, orthopedists, and several pcp. I've had tests for everything imaginable and even had a lymph node biopsy. I finally get diagnosed with something that seems to encompass most of my issues and then I see these people who say chiari causes no symptoms! Crazy! So frustrating. Moral of story...don't get sick in rural WV! lol
Poptart said:
If you are going to neurologists that tell you that Chiari has no symptoms then you really really do need to go somewhere else. Also you need a good primary care doctor. Your symptoms may or may not be caused by Chiari but things can be done to make you feel better. It is hard to treat something if you do not know what you are treating. You need a good neurologist if you have Chiari and a good primary care doctor, whether or not you need a good neurosurgeon will be determined probably after they review your films at the Mayfield Clinic. Sometimes it is hard to sort out what is causing what but you at least deserve a doctor that is open to consider all the possibilities so that they can sort things out and determine what is the cause of everything. It may end out taking a team of doctors working together to make you better because you may end out beings sick from more than one condition. Do not give up on getting better. Good luck.
Anglyn said:I sent my MRIs to the Mayfield Chiari Clinic because I'm in rural WV, both NL I've seen here (one at WVU which would be the best hospital in WV) says chiari has no symptoms and I have chronic fatigue syndrome. I have been unable to get a referal to a NS so I didn't really have any other options. It's not so much that I think Mayfield can magically cure me, it's that I am not getting any better. My doctors won't do anything to treat my headaches, neuropathy, or fatigue. Since they won't refer me to anyone I had to self-refer. The chiari centers will allow you to do that. Since almost no one in WV has experience with Chiari I feel better knowing that these NS have seen numerous patients with this and are in a better position to tell me what my treatment options are.
One of the biggest things I am finding that is needed along with the tests is communication. If they refuse to talk to you like a person and only just a number go looking for another one. Poptart LOL it's funny you mentioned the commit about the Vet cause Ryan said the same thing the other day when we took my dog for shots!!! Animals get better treatment than we do!!
I do not know what to do with the syrinx's (i have 2 in the thoracic spinal cord). The NS said he wants to do MRI's alot to keep a close eye on them.
We just had to put one of our cats down cause of a UTI and he was suffering so much. Ryan called the vet and he said come into office...this was at 11 at night!!!! see any of our doc's do that!!
I will make sure to ask him about that on the 31st. The syrinx's are a major concern of mine cause from my understanding they cause irreversible damage to the inside of the spinal cord....at at the thoracic level don't you think they would want to deal with that?
I sure will
I agree about the communication. The first neurosurgeron I saw after I was diagnosed with Chiari was in and out of the room so fast my head would swim. He said he wouldn't touch me because my case was just too risky. The tests he did for me in anticipation of the surgery resulted in them finding a brain aneurysm on the right carotid artery and I took a little detour to have three surgeries in three months for that. Then....an off duty policeman totaled my car (with me in it) and I had to have the surgery; it was no longer something I could put off. I got lucky and found Dr. Henderson who totally listens and spends time with you.....I was in his office so many hours one day that he actualy gave me food. Because I am so claustrophobic, he did a lot of accommodation for that too, making sure that the people put me to sleep in the halway before I got in the operating room with all the equipment because he had promised me that he would. He does his own aftercare and even gave me his blackberrry number in case I needed to call him direct. I know he's gotten much busier since then because his reputation has spread and he does surgery for people all over the world but he still maintains that personal touch. I see him at the Chiari Educational Meetings and he greets his patients every time and chats with them about how they are doing. That's the kind of doctor to have. I'm blessed to have had him as my surgeron; he took me on when the other surgeon said I was too risky.
Shirley
Christy Mullen said:
One of the biggest things I am finding that is needed along with the tests is communication. If they refuse to talk to you like a person and only just a number go looking for another one. Poptart LOL it's funny you mentioned the commit about the Vet cause Ryan said the same thing the other day when we took my dog for shots!!! Animals get better treatment than we do!!