Saw a Chiari specialist

So I went to the Chiari specialist and it’s not what I wanted to hear. He quickly said tell me your symptoms so I did and he ignored all I said. His words was I’m going to be straight forward those symptoms has nothing to do with Chiari. My syncope possibly might get better but it might not have anything to do with Chiari. I’m confused I thought for sure all my symptoms had to do with it. He says but you do need surgery because your CSF flow it being blocked. So now he wants me to see other specialists for my symptoms. I would need to see like 5 specialist to deal with all my symptoms. Please anyone give me advice I’m very confused and not sure if I want to get surgery in January for decompression. I’m 34 with 5 children and don’t want to make any mistakes with my health.

Sorry you’re so worried about this and I don’t blame you you haven’t said anything about what your symptoms are? Also what did the other specialist have said about surgery? I don’t where you are maybe someone who is on this support group can help you with a specialist in your area. If you don’t feel comfortable with this doctor and hopefully you can handle the pain until you see another specialist. Wishing you the best!!

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My symptoms are many syncope, chest pain, palpitations, headaches, tingling on my hands, chronic neck and back pain. Pain in my legs and arms, fatigue, heaviness on my shoulder. My limbs get tired very fast. I’m very moody, depressed, short of breathe, fast heart rate, stomach pain, nausea these are most of my symptoms. First I went to a cardiologist and he said he doesn’t think my syncope had to do with my heart so he referred my to an epilepsy and seizure specialist. That specialist said she doesn’t think I had either epilepsy or seizures and recommended to get an MRI and that’s when she sent me to see the Neurosurgeon for my Chiari and now the Chiari specialist is saying my symptoms are not related to my Chiari. I’m confused

Hi, sorry you’re going through so much. Has anyone mentioned EDS (Ehlers Danlos Syndrome) or POTS to you? These are comorbid conditions which may explain many of your symptoms. I think what your dr was trying to tell you is that yes, you have csf blockage with the chiari malformation, but the surgery will not relieve all of your symptoms because some may be due to other conditions that sometimes accompany chiari. Good luck to you!!!

Hi, I completely understand your frustration. I had many of your symptoms and I was told the same thing by my neurosurgeon, that it wasn’t the Chiari. I was sent to a neurologist and was diagnosed with vertebral basilar insufficiency (caused by the Chiari) which does cause many of those symptoms. It was a simple ultrasound test and may be worth your while to ask about it.

I saw my neurologist and he quickly wanted to do surgery decompression without touching the dura. My only concern is having to have surgery again because removing the bone wasn’t enough? I will be seeing my cardiologist tomorrow to do an echocardiogram but I hope it’s the bubble test because I have a PFO and I’m wondering if that is what’s causing my chest pain. My cardiologist didn’t believe me at first but since my neurologist doesn’t believe my Chiari has anything to do with those symptoms he now wants to verify my story. I’m just fed up of having to see these doctors over and over when all they have to do is just do the testing and get a result. I mean we know our bodies and know when something not right, but I’m to young they say. It gets frustrating. I want to thank you all for your comments and advice I will be asking for the POTS test. I will also talk to my neurologist about that vertebrae basilar insufficiency. I have so much going on I just want clarification of what I have. Thanks all for your support.

I have A-fib and Just developed Sinus Tachycardia due to my chiari.I am getting test ran locally My heart dr. thinks my heart problems are due to chiari. Look at you tube videos and hunt down a neurosurgeon that has a chiari center and specializes in chiari. I live in Indiana but am going 700 miles for surgery so I dont have to get it redone later as much.I have a lot of your symptoms and it is due to chiari for me.There are thing that need ruled out and can contribute to your problem like EDS and Tethered cord.

I will check on that A-fib and EDS I’m just surprised that he hasn’t thought of testing me for other things and wants surgery right away. Yes I have a CSF blockage but what symptoms does that cause that they want surgery right away. I would if thought that they would tell me a more of what symptomatic Chiari is. Which I have more questions than ever. I want to thank you all for your advises and I wish you all a Happy and healthy 2017. :confetti_ball::heart:

Is your Dr. a Chiari specialist? Get a 2nd opinion as well. I agree with Lora and find a Neuro that specializes in Chiari. I found one near me - 90 miles and am so glad I did - for my 2nd opinion. I have AFib - well did and it was due to the Chiari. I haven’t had an episode since surgery which was in October and am hoping that is now resolved. Good luck getting to the bottom of everything.

I Would Personally Not Allow That a Doctor Like That one. to Do A Sugery on Me. . Go to another one… I Know that Sounds REALLY MAJOR ! I had a chiari Specialist I THOUGHT… and Now, I don’t…So I have NO, Idea where I am going to…So I understand what I am saying is. Not peaches and Cream…However. It’s better safe than sorry…God Bless You…

You must take Ings one day at a time. Things will work out. But make sure you do all the test you need to get done in order to do the surgery so that there’s no further complications. Wishing you the best!:smile:

I am trying to get a second opinion it seems to be harder than I thought. My only problem is that he is a specialist in neuroscience and not Chiari so he can’t even say that my symptoms are not Chiari related if he doesn’t have a background in that area. I will be asking more questions as I did some background search on him and didn’t like what I read. Thanks for your concerns.

Yes I will. I’m just worried about my chest pains i was to see my cardiologist to get surgery clearance but he didn’t do any test on me. So I just confused as to how do you give clearance on a person if not test was performed to see if I have heart problems. So there is so much that has me worried. Then he says just buy alivecor an app that tracks your heart rate to see if there is something wrong with your heart, instead of being billed $3000. Okay call me crazy but that’s why I have insurance for I’m not worried about money just my health. As you can see I’m just over my head with confusion.

I know it’s hard but is there any chance of getting another cardiologist to look at you. It doesn’t hurt to find it.