Chiari Online Support Group

Saw 2nd neuro today and now totally confused

#1

I am so tired of this dance. Saw another neuro today for a second opinion. She was not impressed by my Chiari at all, said my exam wasn’t indicative of it, but I am showing certain neurological changes so I’m getting a cervical MRI, bloodwork, blah blah blah. She looked at my MRI and said she didn’t think it looked like Chiari although maybe if she was bring generous she’d call it a Chiari 1. :frowning: I don’t see how that’s possible looking at my MRI, but what do I know? I’m not a doc. This is so fatiguing and discouraging.

She started with an exam, and while she found some neurological symptoms (hand tremors, left arm presented as weaker, etc.), she didn’t think they were attributable to the Chiari.

So, I had a nerve conduction test–that was fun–and right ulnar nerve isn’t great but otherwise pretty unremarkable.

She wants a host of bloodwork checking for another autoimmune disease (I have Hashimotos thyroiditis), a cervical MRI, and an EEG. She’s requesting the radiologist measure the Chiari herniation as it’s not reflected on the report.

Now I feel foolish for even considering the Chiari.

sigh

#2

I understand exactly how you feel. I got an MRI done Monday and they did not even show anything wrong. I had an MRI by a neuro and he said I have a 8mm but does not feel like that could be causing me problems. I guess we both just need to find another doctor. Don't give up.

#3

Thank you. It's just so discouraging, to say the very least. I'm just so tired of all this--all the chasing and searching, referrals and appointments, tests and results. I burst into tears when I went to bed. I'm confused and exhausted on top of symptomatic. I really thought Chiari made sense, but no one else seems to agree with me. And since they're the ones with the MD, it's hard to discredit them. You know?

I'm still pursuing it and am eager to hear what Dr. Batzdorf at UCLA says. If he says it's nothing significant, I'll feel more assured that that is indeed the case. Ugh.

I saw your post and am sorry you're going through this too, but I'm glad we both found this place. Don't give up either!

#4

Unwritten, when you see the right NS it will validate everything for you, and you will not wonder or feel foolish. You are not foolish, in fact I believe you know more about Chiari then that neuro does. It makes me so mad to hear these stories because, unlike you, some people give up after an appointment like that. We are made to feel like attention or drug seekers, but the real problem is broader medical community has an outdated education and have not taken the time to look at the newer research. These doctors are very convincing when they dismiss the Chiari, aren’t they? but we all know better. There are NSs out there who “get it” and have the skill and understanding to help you. Your symptoms sound classic Chiari to me…Keep moving forward and don’t look back to that awful appointment :slight_smile:

Jenny

#5

Don’t you give up either deb, your doing the right things too!



littledeb said:

I understand exactly how you feel. I got an MRI done Monday and they did not even show anything wrong. I had an MRI by a neuro and he said I have a 8mm but does not feel like that could be causing me problems. I guess we both just need to find another doctor. Don't give up.

#6

Great advise from everyone…Don’t Give Up!!! We have to be our own best advocate or we would suffer needlessly. (more than we do now) I was brushed off for 3 years and just had spine surgery for cysts on my spine. My Chiari I am told is incidental at 6 mm and my syrinx shouldn’t even be mentioned at only 3 mm. I’m of the belief that if it’s there…IT SIGNIFICANT!

Keep fighting…it’s your life and your health!!!

#7

I totally feel your frustration. We are in a very similar boat.. I think our "diagnosis" was even made on the same day. I've taken the following approach, 1) accept the fact that most doctors do not understand this condition, 2) set firm in my mind that because there exists the possibility that Chiari may be the cause of my suffering that it's worth getting to the bottom of, 3) Fire these mother doctors one by one until I find one that will listen to me, take me seriously, and completely rule out or confirm this to my satisfaction. Completely civilized of course ;)

#8

Thank you Beeba. It's good advice, really; good reminders for us newbies facing these absurdly common frustrations for the first time. I'll copy and paste it at the end of this message for others who may be following.

The new neurologist is checking a lot in my blood that makes some sense, so again, it's good to exclude (or include) as needed. But I remain completely vexed by her interpretation of my MRI. She said the radiologist didn't view it correctly and actually my tonsils are above the foramen magnum; that what he was seeing was my brain stem (or something like that). Ummm...huh? I didn't argue; I was too confused and, on that day, way too fatigued and foggy headed to really process it all anyway.

I am curious to see the blood test and cervical MRI results; until then, I'll just continue to plod along.

Here's Beeba's comment on Donna's discussion:
"Hi Donna, I hope you will be happily surprised but honey you have been around long enough to know that you need to go in with thick skin and don't put to many eggs in that basket. But what you can do is go with a real plan for what YOU want from this appointment. And MT opinion is an upright flexion/ extension MRI and a rotational ct scan. I am starting to feel like a broken record about this issue and starting to wonder if anyone listens. A nl's job is to give you medicine and if that is your choice I truly hope you find relief. But honestly my changing point was having that test done and it is boggling my mind that it is not just standard. I am going to try to post my pre op images. I will also post the same view laying flat. I am hoping it shows just how important and totally different the images can be and why they should be done. I am recovering now from my cranial cervical fusion surgery - won't lie - hurts like a biotch!!! But my 3 year headache is so much better since my first debacle 3 years ago. You can see the brainstem no longer being pinched and is straight as it was meant to be. So please go in with the attitude of what you want. Their opinion is not the be all end all and if you get the right tests done and they see it perhaps it will educate them that with this condition comes other issues. Many of which for me have been fixed with this recent surgery - having a little trouble getting to enjoy it because like I said it is not an easy surgery. It was my 3rd and going by pictures even alone should have been more standard - but getting in there yet again I had vindication that I was not crazy and there was much more going on. Just be a broken record - I want a flex/ext MRI - repeat I want a rotational ct - repeat. I pay my own insurance I have rights to request the test that I need and want and if they all come back normal esteemed nl then you can say I told you so until then I would like to listen to my gut and have these tests. You be strong Donna and just keep repeating it. I had to and finally the guy just shrugged and said he didn't care here's the order. His indiffence has been the most help I have gotten. Strange how life works."

#9

Don’t feel foolish this is a very frustrating process. I have been going through it for 8 years first they said it was chronic ear infections!! Then I had cat scans that showed nothing the first two mri’s they didn’t see anything either and then after 2 years of tests due to dizzy spells, ringing in the ears and severe migraines they finally diagnosed chiari. I didn’t know what it was. Sometimes it feels like I am fine, sometimes I feel like I’m 90. Just hang in there whatever it turns out to be.

#10

Hey, don’t let the doctor convince you that a Chiari I is not bad. I went thru years of pain and self doubt before the doctor found mine and then treated me like I was stupid! My general practitioner told me what was wrong the Chiari!! The nuero had me crying all the time, taking all kinds of pills, seeing all kinds of head doctors, therapists, etc! Since I stopped going to him I have got myself straightened out! If you get proof you got it, EEG is how they found mine, find a good doctor that can help you learn how to deal with it! Finding out is the hardest part!

#11

It took me a botched surgery, going to nearly all the NS in my state, having to go to another state where a true Chiari Specialist is and got answers. He also told me things that no other doctor ever has. Like I also have spina bifida occulta. At 40 you would think some doctor would have caught it but no.

As others have sais when you see the right NS they will put you at ease and will take time to answer all questions too. Never let a NS say CM1 is nothing.

#12

Hang in there -you know your symptoms best as well as your gut. Look for a Chiari specialist (read the information presented carefully) and see what they say. Prior to my current doctor, I had two neurosurgeons and one neurologist tell me that it could not be Chiari because the herniation is only 3mm and/or I became symptomatic after a car accident. I tried again, and my doctor told me and showed me, why he feels it is Chiari. I cried to finally have someone listen and take me seriously. It has been a long 6+ years of pain and worsening of symptoms. You are not alone and we all feel your frustration.

#13

I dealt with alot of the symptoms of chiari 1 my who life but nothing was ever discussed even though i had a family member have it since he was born and we compared symptoms. It took my head to get a few staples in it in my early 40s for them to find it and actually say ohh look there it is. I went through a few drs before finding the right one to help me along. Just dont give up. Hopefully you will get lucky and find a dr who trully cares. My own dr didnt help. I was lucky to go through the emergency room to find a dr who helped me find my neurologist i have now. I wish you lots of luck and prayers sent.

#14

Don’t give up… Until you have the answers to your problems… Hang in there…
When it comes to Chiari, we have all learned it is all about the Doctors. Chiari experienced Doctors, especially on the adult side (that’s the patient, not the Doctor), are few and far between. Most of us have seen so many different Doctors, with so many different answers and opinions, so many misdiagnoses, it becomes nerve wrecking. (pardon the pun)
I am in a family of Chiarians, my late mother (never diagnosed, no MRI’s), myself, my daughter, and now my granddaughter. So over the past 60 years or so I have seen and heard it all, all the different Doctors and different opinions, mind buckling.
We have learned that doing whatever you can to find the right Doctor that has the right experience is the best chance your or your family member will ever have to get through this.
I know this can be a very difficult thing for those of us that do not live near one or can afford to get to one. But we must give it our best attempt to do so. One good thing is, we now have forums like this one, to help find some answers and get direction.
Good Luck to all,
G’pa Jack