I've getting a lot negative responses from doctors that we shouldn't go to Chiari Institute.
Like for an example, doctors have told me, well he's NS, of coarse he just wants to do surgery.
I am getting really nervous going there! So is my parents..
Has anyone gone to the Chiari institute of Wisconsin?
Hi Sydney, yes surgeons are notorious for doing surgeries. Lol. But seriously, I’d rather be seen by a surgeon at a chiari place than any old surgeon. They are able to determine if surgery will be helpful or not. And they have more experience with chiari surgeries.
I saw a local surgeon who was ready to do surgery on me without even doing a cine MRI. She said she does about four of these a year. Then I went to mayfield chiari center. It has been a much better experience. From what I can figure I think my dr there does probably 4 of the surgeries a week.
There is no harm in going to chiari center. You still choose whether to have surgery or not. I have seen you suffering with theses different treatments for awhile. I hope you and your parents choose to go. These drs that are trying to scare you are not helping you. Sometimes it just ends up that you need surgery no matter how much you hope or wish you didn’t.
Hi Sydney, I agree with Donna. They have more experience about CM then local NS do. It's your decision whether to have the surgery or not. So I would at least see what they have to say. Wish I lived near a Chiari Institute. All the NL and the one NS that I've been to around here really don't know much about CM. I wish you the best of luck!
I disagree with the above posts. I have just had two girls 7 and 5 go through surgery for decompression in the last 6 mos at Children’s hospital of WI. One with CM and one with CM with a syrix. From the research I have done and from information from my Neurosurgon some of these “chiari institutes” have been set up for financial gain. I was told that only 15% of cases through Children’s hospital of WI are surgical and a much higher percentage of cases go surgical through these Chiari Instiutes. I would recommend more than one opinion and a teaching hospital where they are up to date on new information and procedures. Good luck! This is a hard journey make sure you ask a lot of questions and don’t stop until you are comfortable with all the information; these Doctors work for you and you are ultimately in charge and your own best advocate.
Cmac, Did you get a second opinion for you kids? And how long after diagnosis did they get surgery? I’m just wondering because I think maybe the reason the institutes have higher surgery rates is because the average neurologist and neurosurgeon poopoo people’s symptoms especially if their chiari doesn’t measure up. When patients finally get fed up with not being helped they head to a place that specializes. And maybe this was someone that needed surgery but did not get it until going to a chiari place. That’s just my thoughts and I could be wrong. I was just curious how the journey was for your little ones.
I think chiari centers do more chiari surgeries because other doctors, especially NL are quick to dismiss you. Some NS are poorly educated on Chiari. I went to a teaching hospital first and the very well known NS there said he would do the surgery but it would only help my headaches because chiari doesn't have any other symptoms aside from headaches. He was listed on the universities website as being a chiari specialist! I didn't want to take a chance on a doctor that seemed so ill informed so I went to the Mayfield Chiari center and after the first visit Dr. Ringer consulted with all the other doctors in the practice before giving me his opinion on surgery. He said where my csf flow was only partially blocked he wanted to be 100% sure that the benefits would outweigh the risks for me before he operated. In my case all the other doctors agreed that I was a surgical candidate. In my opinion if he was just rushing me into surgery to make money off of my chiari then he would've scheduled it that day and not consulted anyone else. Not to mention that he worked with me on his fee because my insurance was out of network.
BTW...I had the surgery and all those other symptoms that were not chiari according to the NS I saw first are vastly improved. Before I came from work and went straight to bed. 4 months later I come home from work, go jogging, and cook dinner!!! If I had not gone to one of the "chiari institutes" I'm not even sure where I would be today. Probably on disability honestly because I was barely getting by leading up to surgery.
My oldest daughter was diagnosed on a Wednesday in August we were admitted on Monday to the hospital because of high pressure concerns and had surgery on Wednesday. We learned about Chiari and had to make a decision in 4 hours about surgery so we didn’t feel like we could get a second opinion but had to depend on the doctors and nurses in our lives and trust that we were in the right place. After that I spent more than 100 hrs researching Chiari the doctors and hospitals and questioned my doctors, bloggers and other people all over the US on it. My younger daughter had different symptoms that may or may not have been chiari and I asked our NS if I should get her tested he said the chances she had Chiari to were so small he would not put her through the MRI. I explained the symptoms she had to my pediatrician (pain in her back and legs, hoarse voice, falling or running into things all the time and periodic bed wetting). None of the symptoms my oldest daughter had. He sent her in for an X-ray and saw a slight curve of her spine but still said he wouldn’t put her through an MRI. A long story short I pushed for an orthapeid appointment they found scoliosis and he decided we had to “rule out chiari” with an MRI. We didn’t rule it out and we added syrinx from c2 to t9. My NS said syrinx of this size means surgery. By this time I knew we were in the right place and they were doing the right things. I was only replying to a request for information on Chiari Institute and I just relayed what my research and personal conversations revealed to me. No judgement no negativitity just information. I just want to help because we were lucky to have great doctors who did all the diagnostic testing and listened to us although I did really push for that testing for my youngest I ultimately got what I requested even though they thought I was a crazy worried mother. Good Luck Sydney!
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Donna said:
Cmac, Did you get a second opinion for you kids? And how long after diagnosis did they get surgery? I’m just wondering because I think maybe the reason the institutes have higher surgery rates is because the average neurologist and neurosurgeon poopoo people’s symptoms especially if their chiari doesn’t measure up. When patients finally get fed up with not being helped they head to a place that specializes. And maybe this was someone that needed surgery but did not get it until going to a chiari place. That’s just my thoughts and I could be wrong. I was just curious how the journey was for your little ones.
Sydney,
I had my surgery done by Dr. Heffez in Chicago in the beginning of 2000. I am doing well. He is at the Chiari Institue of Wisconsin. I was very happy with him, but it did take a while to get an appointment.
Tim
I too had my surgery done by Dr.Heffez in Wisconsin last June. Keep your appointments. I have no regrets
A good surgeon will explain all your options and let you make the decision. If you need time to see what is the right decision for you then they should give you that time. Ultimately, the decision is yours whether you should have surgery or not. They are a surgeon and that is what they are paid to do. If you feel surgery is the right decision for you and you are confident and have trust in that surgeon then go for it. If not, move on. JMO
I went to a non Chiari neurosurgeon. I found that he was knowledgeable about chiari and syrinx though, ordered many tests to figure out what was going on (full spine MRI, cine mri, ct scan, and so on). He spent a lot of time examining me and doing a full neurological exam (very similar to what I went through with the neurologist). He flat out said that the decision was mine. He also offered to refer me to another doctor if I did not want to continue seeing him and provide this doctor with test results and copies of his notes. He told me that it was more about the progression of my symptoms and how they were impacting my life. Waking up gasping for breath and having balance issues were getting to me. Not being able to cross the street without being out of breath took its toll on me. The final straw, so to speak, was falling down a flight of concrete steps and not remembering falling- just going to the hospital to get stitches. It took me about 8 months to finally decide to have surgery and I am glad I did. I will always have issues and will have to “keep an eye” on the syrinx but many symptoms went away after the surgery for which I am thankful. Not once though did I feel that I was being rushed into something I did not want or was not sure about. I have heard good things about the Chiari Intitute but have no personal experience with them. Sometimes you just have to go with your gut feeling.