Neurosurgeon ego :(

General
1

So, I got diagnosed with Chiari not even 2 weeks ago, and I just had my appointment with a Neurosurgeon today. It was horrible. He treated me like, since I wasn't a surgical case, that I was just wasting his time. And I knew I didn't need surgery, or at least I was pretty sure, because my symptoms are generally bearable in day to day life. But it doesn't mean they're not there! He told me that it was a common diagnosis and that I should just return to my everyday life.

Then when I explained that what I really wanted to know if any activity should be avoided, so it doesn't progress, he just told me that I've had it since birth and it won't get any worse. Really?! My symptoms are clearly getting worse, if he even bothered to ask about them, which he didn't.

He scheduled a CINE, I think just to amuse me, but they told me it would be fine and they would call me to tell me so.

All I really wanted was some advice and someone to tell me that they would keep an eye on me, which I didn't get. I know my case isn't fun for him, but geez, it doesn't mean I'm not concerned about it.

Sorry for venting when you're all going through so much! Thanks for listening :) On to the next doctor, I guess, or maybe I shouldn't worry about it anymore.

2

Sorry you are having to though this. Two weeks is very fast to get in to see a NS. I saw 2 NS locally before I went to the Chiari Care Center in CO.

The first NS I saw had a wait and see attitude and didn’t think my chiari was severe enough to be causing my symptoms. He also said he couldn’t make any guarantees that surgery would eliviate my headaches. The second NS was ready to cut me open as soon as he saw I had good insurance and guaranteed the surgery would eliviate my headaches.

This is when I decided to try to get into a chiari specialist.

Good luck and remember we are here to listen whenever you need to vent.

Blessings,

Diana

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hi traci...you definintely owe it to yourself to get a 2nd, and maybe a 3rd or 4th opinion. there are several great resources out there with information - - lists of doctors (NS) that are chiari specific. i am having surgery in early january with a doctor that I feel comfortable with. I met with 4, and all 4 said I was a candidate for surgery. However, I don't think I would have let all 4 operate on me. do your homework and don't feel rushed into anything.

I think it is a great thing he has ordered the CINE MRI - it can answer some questions (blockage or no blockage??) and help you move forward from there...

Hope this helps!

traci

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Sorry you had such a bad Dr. visit. We have all been there and I hate to say it but you may have others. Just remember that You are not alone in this and that we all understand what you are going through. I don't know how long you have had your symtoms, but over time you wil get to know your body better and find the things that cause upset. For me if I cough or sneeze to hard it hurts my head or if I laugh to hard it can cause a headache. Bending over to pick things up makes the world spin. The list goes on. Maybe they don't tell us what not to do because the list varies so much with each person. The Conquer chiari website has a long list of things to avoid and things to help with your daily tasks among other great resources, check it out. Also get a second opionion, my boss is an amazing Physician who I have great respect for and he will always tell his patients to get s second opinion. Smiles Tiffany

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OMG Traci ~ That is exactly word for word what my first NS said to me. Its been there since birth and it won't get worse. I asked him about all my symptoms -- he said you just need to go to a headache clinic. I left there in tears as I said to my husband I'm going to get no help.. no one believes my pain. I didn't make it up -- its the reason I had the MRI in the first place. It didn't come on after my Chiari diagnoses.

I hope you have found some answers - for me we are going to wait until my symptoms become unbearable. I just can't see cutting my head open right now - I have more good days than bad.. so we will wait until that flips.

A Chiari Sister~Lori

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My primary physician was the one that brushed Me off. I had to continue to complaint to her in order for her to send Me to an neurologist because she said I had chest strain and carptunnel. When I yawn my head would hurt so bad but it only lasted about 30 seconds but when I cough, sneezed, and moved wrong I would have sharp stabbing pains that moved thru out my left side. It started with numbness in my left breast she said that was because of the chest strain. My pain started in my chest then down the back of my arm to back of my forearm to my ring and pinky finger to my pointing finger and thumb back up inside of my forearm to inside of my bicep to my neck and my head. Man I hated to sneeze cough are move suddenly. It’s better now I have none of those symptoms after surgery but I still have some but thank God not those. O yeah my was made worse from a car accident. So be careful!

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Hi Traci,

I had my first appt. this week with a Neurologist and he diagnosed me with Chronic Daily Headaches and is running more tests. He didn't even mention Chiari to me even though MY MRi showed a 5mm Chiari Malformation Tpye 1. I told him I had reviewed the report and that I had done research and that I was suprised that he didn't even mention it. He said confidently, it's "incidental". He said there is plenty of room for the CSF based on my MRI but I hear that can't be determined without A Cine MRI...So, I guess it's good that the test was ordered.

In the meantime, I feel your pain. I'm also in CT so I'll keep you posted if I find a good specialist.

Keep up the good fight! ~Lauren~

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no hun you get it sorted believe me it gets worse and goodluck xxxxxx

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My neurosurgeon also seemed sure that I had no blockage, it looked pretty squished to my untrained eye. The only tests he did were to pull and push at his hands to check for weakness. I actually went home thinking I could be crazy.

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Wow I feel like we’ve all been to the same dr! What do u do when there is not a specialist I your area? I don’t want to travel just to hear the same thing, your flow is fine, ur Chiari isn’t bad enough to do anything, even though I hurt like heck everyday n can’t be myself anymore! I’m so sorry u all have been through this, it sux and it seems so unfair. Obviously we all can’t b crazy right? I tried telling my fam what I read on here and I get …y would u believe what u read on the Internet…like its all off some junk sight!

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Some neuros are like that, just come right out and tell him what is going on and you are concerned. Most Drs have bad days all the time....just do what he says and it will be ok...he is concerned about the people going blind with brain inflammation and all that other stuff, hate to bring that up...a friend of mine had it soooo bad along with Rheumatoid Arthritis and Fibromyalgia that she shut herself off from me and everyone...she did loose her sight due to misdiagnosis and treating her eyes with meds instead of finding the Chiari and all she needed was a brain scan in the first place and decompression surgery...just ask him if it will get worse...it can...watch your eyes ok.

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We took my daughter to Milwaukee WI Chairi center.Dr Heffez told us that it doesn’t really matter about the Chiari itself it matters about what it does to ur brain stem.Krissy was very compressed.

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I know you wrote this a long time ago, but I was just diagnosed with Chiari and have been given the brush off by a ns also here in ct. Also my nuerologist had known since 2009 about my chiari and never said anything then just up and dissappeared one day! were you ever able to find a good ns in the state? right now I am in contact with the chiari institute in ny, but I have state insurance and they won't cover out of state. I need to do something though my painis getting unbearable.

thanks

nicole

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My neurosurgeon was wonderful... Dr. Diluna over at Yale. LINK

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i would see another doctor, the first neurologist i saw said we should just watch it for a year and that i has no herniation, the second i saw said i had a 13mm herniation and that i would have had a stroke by the end of that summer if i didnt decompress... all im saying is make sure you get more then one opinion if your uncomfortable. this is your life, not theirs, you have to live it, not them.

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I saw Dr. Judith Gorelick for my second opinion, she was great! I would definitely recommend her. I'm not a surgical case by a longshot, I actually manage my headaches now with an allergy medication, worked like a charm, although I still get other symptoms occasionally. Anyhow, even though I think she knew that I wasn't a case for her (she's a neurosurgeon), she still did a complete exam on me, answered all of my questions, took plenty of time with me, and she was really very nice.

I also saw her in her Wallingford office instead of in New Haven. It was a really relaxed place, felt more like a wellness center that a neurosurgeon's office, which was so different that going to Yale, and I was much more comfortable there.

I believe she's one of the only doctors in the state that sort of concentrates on Chiari, but it was some time ago now that I saw her, I'm sure you can find out more online. She gets great reviews on Vitals and Healthgrades. Good luck!!

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Just wondering how many of these physicians are males. I do not mean to be sexist, but both my Neurologist and Neurosurgeon are both females and I find them to be very compassionate and validating of my symptoms. Over the years, I have switched all my Drs. over to females. Just a thought.

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Wow, this is the reason I love this site. Interacting with MDs can be frustrating. I don;t know if I'm helping or hurting with the following comments but, everyone comes with a bias(MDs included), so it is probably worthwhile knowing some of our baseline biases.

A neurosurgeon makes money operating. Our clinic serves primarily as a means to support our surgical practice. Any medical management we do takes us away from our surgical management. So, many Chiari patients get stuck in the middle. A neurosurgeon is looking for surgical treatment. If they don't see it, they will send you off. However, >80% of Chari I patients never need surgery. The Chiari I is an anatomical diagnosis. The only treatment for a Chiari I is surgery. But medicine can help the symptoms. So where do you go?

In my practice, I try to make sure that every patient is seeing a neurologist as well as me, in order to confirm that they have achieved maximal medical management prior to consideration of surgery. However, finding a neurologist with expertise in Chiari symptoms is problematic. Most neurologists will be adept at treating head-aches(they may just not customize their treatment for the Chiari patient population). There is no easy answer but know you are going to see a neurosurgeon to discuss surgery and a neurologist to discuss medical management(although there may be some overlap).

In terms of MD compassion, that is just something that is a problem the world around. Yes, women tend to be more compassionate(general stereotype). So do people who work in pediatrics(me). Care to guess the residency with the lowest female %? Yes, neurosurgery. Probably for multiple reasons, not the least of which is the length of training. The average neurosurgeon completes their training >15 years after HS(4 years undergrad, 4 years med school, 6-8 years residency, + fellowship(1 year for pediatric neurosurgery)). Conversely, neurology residency is typically 3 years(difference between medical and surgical training).

Perhaps that is too much data with too little relevance but I see many patients who want me to help with medical management(and on this site, I see many people dismayed by their initial neurosurgical opinion). Remember, these are just the opinions of the MDs. It is certainly preferable to get more than 1 opinion. But, if you don't want surgery(symptoms aren't that bad, whatever reason), you should probably be seeing a neurologist, not a neurosurgeon. And before you see anyone, make sure the person answering the phone can pronounce chiari and knows what it is. If they don't, try another location. Everyone practices slightly differently. In my practice, I try to have the patients see me (and then follow up with serial MRIs to confirm stabillity in symptoms and anatomy) and neurology(again, to achieve maximial medical management).

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Great information - thanks!

Speaking of pain management, I should also mention for those in CT I have been to the Headache Center - www.hartfordheadache.com - they are fabulous!!! It was actually my allergist that prescribed Periactin for my headaches, and my doctor at the headache center agreed that would be a good treatment for me. It took care of my daily headaches. I don't know that the headache center specializes in Chiari, but they have neurologists on staff, and they are extremely knowledgeable about headache management.