Chiari Online Support Group

Awful appointment with NS


#1

I had an awful appointment with a neurosurgeon today. I waited six months to get in to see him. He said that it’s not Chiari because my number one complaint isn’t headaches. He said every “true” Chiari patient that comes through his office comes to him because of the headaches. (I get 1-3 headaches a week, pressure at back of head to front, my eyes feel awful pressure and I’m often sick to my stomach. I’ve lived with the headaches for years so felt my new and constant/worsening symptoms were more concerning)

He showed me my MRI and said that yes my tonsils measure at 5mm but again, my numerous symptoms are likely from something else. And what the radiologist identified as a syrinx, isn’t likely one, because my symptoms didn’t start in my hands. He said that I need a follow-up MRI to watch the thing that’s not a syrinx.

He’s the Chiari expert in my area and a second opinion I feel would be futile. He said he’ll send a message to my family doctor and the neurologist I’m set to see in August to have the Chiari and Syringomyelia diagnoses removed from my file.

After years of suffering various symptoms, I felt like I had finally found the puzzle pieces with the Chiari diagnosis. While no one wants to have a condition like Chiari or Syringomyelia, it all added up in the research I did online. There was relief in knowing my condition had a name. Now I’m back at square one with a myriad of symptoms, no answers, low quality of life and another two months to go before my neurology appointment.


#2

I had a bad experience with the neurosurgeon that I visited as well in st Louis, mo. So I’m going to UPMC in Pittsburgh to seek a second opinion. I researched their neuro department and it seems like they rank about #8 in the world for their program as it relates to chiari and syringomyelia. Never accept an unsympathetic doctors opinions of something that’s clearly revealed on MRI. Chances are he graduated last century from medical school and still goes on what he learned back in the 70s, 80s, or 90s. Just think, if surgeons only suck to what was taught to them in school, then they would still be barbers bleeding people in a barber shops. If they are too lazy to keep learning from current research and stay connected to classroom updates, then they don’t deserve our business or respect.


#3

Oh my Gosh ! I am Sovery sorry you have gone through this. Ya know even when docs are specialist ,They are no better or worse than us. And they are held to to HIGH standard however some for whatever reasons do not meet that HIGH STANDAR !!! It’s VERY SAD !.. i Just have Decopression surgery on June 22nd I’m only about a week out…My NS is Brian Witwer in Grand junction Colo . I am SOOOO BLESSED to have him this close… he’s only like 15 minutes away. IF you can ever make it here. HE has done at least 14 or ore chiari surgeries he is Very good !.so far no issues with him personally. I know others that go to him as well they all love him…Good luck to you … Blessings NJ


#4

Oh, I would definitely get a second opinion, even if you have to travel. The getting it off your medical record part is kind of creepy too. I don’t know how hard it is to get on disability in Canada, but here in the states many citizens have abused the system. So, people that are really disabled have a hard time even getting on it. I have a feeling that might be what is going on there.

Your MRI has already proved that you have the Chiari and they want to take it off your record like the condition doesn’t apply to you…? That doesn’t even seem like an ethical solution to me if everything you have posted is true.
Possibly, if can travel out of your area, visit another doctor. Do not tell them the wishes of the other doctors to dissolve this from your medical record, or any other of the nonconstructive feedback the other medical professionals have told you.

That was my mistake for some time. I would go into my appts like a parrot and just repeat what the doctor of my first opinion visit had told me. This I learned was a mistake.
In my opinion, keep searching for more help/answers and do not if at all possible relay what the prior health professionals told you. Also, see if you can get the CD’s or print outs of the MRI’s to bring into another doctor’s office. That way you don’t have to pay for the tests again. Hope this helps. Also, if it seems like work and a job to keep up on these things…that’s because it is. It is hard to do the calls and appts and everything else with this health condition. Just keep up the good work…good luck to you friend!


#5

I don’t know if you have been to Pittsburgh yet but that is where I live and I did not have a very good experience with UPMC neurosurgery. Actually, I should not say that about the whole department, I have not had a good experience with the particular doctor that I went to. He will not return my phone calls or e-mails to discuss test results. I have no idea if I need surgery or not and if not, what can be done about my symptoms. If you don’t mind letting me know what doctor at UPMC you are going to or if you have seen them and what you thought of them I would really appreciate it. I am trying to figure out if I want to see another neurosurgeon in the UPMC network or go out of network for a second opinion.
If you have not made it to Pittsburgh yet, let me know when you are headed this way. It would be nice to connect with other Chiari people.
Thanks!


#6

I live in STL and saw two neurosurgeons, both of whom I really liked. I chose one with WashU physicians to do my surgery at Barnes in late 2016 and am happy with the results. If you would like a recommendation for a NS here, let me know. I could give you both names.


#7

I’m so sorry you’re going through a difficult experience with this. I am having difficulty getting into a neurosurgeon as well. I’m on to my fourth one actually. The first one is general neurosurgery and has no experience or training in Chiari; the second one specializes in pediatrics and pediatric chiari only; and the third one’s office makes it so difficult to get an appointment I was turned away; the fourth one is now reviewing my records, imaging, and my list of symptoms I typed up, and I find out this up coming week if I need surgery or not.

I have had neurosurgeon’s tell me that a potential tethered spine and my neck bending downward and forward is more important and causing my symptoms, and that they want to fix that, but they don’t want to address the chiari whether it’s treatment or surgery at all, they want to ignore it, and also ignore the fact that my cerebellum itself is longer than normal and in my actual throat, and that my cerebellar tonsils have moved 5mm.

I hope in august your files are updated and accurate, it’s not right to have medical records that are inaccurate, I’ve been dealing with that since I’ve been diagnosed with chiari and my over a dozen symptoms have started and progressively worsened. I have a low quality of life too, it’s hard. I miss working, helping people, miss being in graduate school full time, miss physical fitness, miss martial arts, etc. I run every other day just to breathe, de-stress, and just keep my weight maintained, buy my symptoms flare up afterward big time.

I hope you get in with neurology soon, hope they can help in some way. It’s great to have a condition name that’s how I felt, but now getting effective and efficient and accurate treatment, care, or surgery for this diagnosis has been the hardest, getting a neurosurgeon to deal with this even harder, and neurology MISDIAGNOSED me for 10 years of my life, tried to misdiagnosis me a second time when chiari and it’s symptoms popped up, so it’s brave you’ll see neurology. There’s nothing anyone could do to get me to go back to neurology, they’ve already stolen 10 years of my life and liver that I can’t get back, I won’t give them that chance again. Plus, I passed all the nerve testing and all that anyway.

Hope things get better for you and that you have positive experiences with doctors from this point forward!