Update. Need advice. Conflicting diagnosis

General
1

hello all. it's been many months since I've been here but I need help. I'll try and give a rundown of the recent events and will ask or help ...

since december of 2011 i've literally been in bed.

symptoms: severe dizziness, nausea, disorientation, spatial and balance problems, eyes feel twitchy, digestive issues, sub-occipital headaches, ear pain/fulness, vertigo, anxiety/panic, confusion, tinnitus, tightness in throat/feeling like i could gag (and an odd feeling like when I talk I feel like i could start gagging and have before...not good for being a singer for a living), neck pain, depression ... all of said symptoms (and more) seem to increase upon rising or walking.

I quite literally have been in bed for over 9 months. Lost my job. At the end of my rope. etc etc etc.

This all started YEARS ago but not even a fraction of on the level of how it is now.

In January I saw a NS (Dr Christopher Duma) who ordered an MRI because my last MRI was in 2004.

Post MRI i go to his office and he said I have 7mm herniation and I should schedule surgery.

After posting on this board, I was urged by you all to see a chiari specialist.

I saw the best in my area, Dr Ulrich Batzdorf around March.

He said (after examination and MRI reports) that I definitely do not have Chiari and even ordered another MRI of brain AND cervical spine with injection). He said it's not chiari and even showed me the Radiologist report from Duma's MRI which the radiologist stated "Dr Duma asked me to take consideration to cerebellar tonsils in regards to Chiari malformation and this patient does not qualify for chiari malformation".

Which, made me upset that Duma told me i needed surgery without even showing me radiologist reports. But, I digress.

The thing is, I am not getting better...in fact, getting worse. The MRI results DO show, (I can see them myself) and have been labeled that I do have low lying cerebellar tonsils.

I am so incredibly miserable physically...and even emotionally.

It seems like chiari describes pretty much ALL my symptoms but the best Chiari dr in CA ruled it out. I have constant pain, dizziness, etc etc.

I am ALL day feeling like I'm on a boat. LIterally can't walk at times.

Around 1999 or so (I'm a singer) I would notice when I would strain for louder or higher notes, i'd get severe head rush and severe pain in the back of my head for a few seconds. And have bad pressure headaches a few times a week.

The one thing I don't really notice I get are the atypical straining headaches (coughing, sneezing, bowel movement).

But, otherwise ... seemingly I could be a CM candidate.

I switched Neurologists. He gave me an EEG. Came out ok. He thinks it could just be vestibular.

I just can't believe that only a vestibular issue could cause THIS many issues.

I did have a few homeopathic tests run by a DO and she said i have severe candidiasis (which would explain my moderate to severe stomach and nausea issues and thrush on tongue) but of course, my PCP said "That's all BS".

At any rate...I'm sorry I'm rambling but I'm quite literally at the end of my hope.

Any thoughts anyone can provide?

Any suggestions on other Chiari drs that could look at my case?

I live in Orange County, CA (about 30 miles south of Los Angeles)

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2

Hi…
I certainly understand your frustration …I am a bit confused …how did Dr. Duma come up with the 7mm …when the radiologist said it wasn’t a CM??
Your symptoms sure sound like CM…
Have you had a CINE MRI…flow study to see if the CSF is flowing correctly?
On the top of the page is a tab …DOCTORS…not sure if you checked that out.
Just wondering if you ever met with Dr.Duma after your 2nd opinion with Dr.Batzolf? It would be interesting to know what Dr. Duma had to say in regards to the discrepancy …the radiologist report and what Dr. Batzolf told you.
Please know we are here for you…sorry you are dealing with this.
Lori

3

I am in the same boat. I was shown a report and have seen the films of my CINE MRI. I have NO CSF posterior to the cerebellum. I was told by a NS that I do not even have a chiari because it only measured 5.5 to 6mm of herniation. He also told me that he has seen 10,000 patients and that none of them have ever had my symptoms...ringing in the ear, balance issues, nausea, pressure in my head, pain in the ears, dizziness/motion sickness, and it all gets worse with moving around or going into the sunlight.

Get another opinion....and another, until you get some answers and relief. Some doctors feel they won't be paid enough or won't bother to treat you if you have a possibility of complications. It is a horrible way to live life - being stuck in the bed constantly. We are all here for you and will help if we can.

4

I didn’t go back to Duma because of many many reviews of patients saying all he wanted to do was procedure them.
Plus…on my first visit…(before ordering MRI) he told me “I wouldn’t do surgery on you.” And gave me a list of reasons as he was looking at an old MRI from couple years ago.
He then ordered his MRI where he asked radiologist to especially pay close attention to my cerebellar tonsils.

I went to Duma to review MRI results and he saw I was in such bad shape and said I was 7mm herniated (his opinion. Not marked by radiologist).

Dr Batzdorf said I was more like 3-4mm herniated.

Regardless … I’m miserable.

I thought it was just me but sometimes going outside makes it worse. May be just the movin around but when I try to get fresh air, I get so discombobulated.

Literally feels like my body is at war with me.

I went through a SEVERE battle with dark depression through this (still battling) and have quit my pcp because he said it was all mental and gave me klonopin.

Batzdorf told me he strives to get ppl’s tonsils to look like mine after surgery. Meaning: mine look fine.
He also looked in my eyes to see some blood vessel. He said chiaris DON’T have a certain vessel visible in their eyes and I do.

Anyone in southern Cali have a CHIARI dr they recommend?

5

Wonder, I’m glad your not giving up. Just keep taking steps like are and you will find the right doctor. It’s horrible to be told your symptoms are all made-up. We know there not! Your symptoms seem Chiari related to me too. I’m sad to hear your also dealing with such a dark depression, though its not exactly a wonder why. I’m sorry :frowning:

Keep going,
Jenn

6

I signed off on Chiari due to every radiologist (about 3 or 4) AND the Chiari specialist telling me i DO NOT have CM.

I'm NOT trying to say i DO have it simply due to the fact that I know the road ahead if I do in fact have CM ... I guess I'm just looking for ONE MORE specialist to rule it out then I'll move on.

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I’m not sure. I’ve had 4 or so MRI on brain with one including cervical spine.
How is cine MRI different?

Ps, does anyone ever feel like their eyes aren’t able to stay on a single object? Like they’re jumpy? Not like the nystagmus you get from an ENG test but more like the nerves or muscles are very slightly twitching?

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Then, No. I have never had a cine MRI.
I guess Dr Batzdorf didn’t order one for some reason.

9

Is it a lying down MRI? And is it done on any regular MRI machine or is it a special machine?

10

This totally looks like CM to me! Luckily you have a very good looking odontoid :)

Basically it's just too crowded in there man. This is the first picture i uploaded when i found out what the ideal brain situation looks like (i'm on the right)...

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I agree. But then why did the leading CM specialist in California say I don’t have it. And also the radiologists?

Have you have surgery?

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It's been a year since my surgery and I'm seeing my on Monday to request an MRI among other things. What he did was remove a piece of the skull in the back... the part that is kinda scooping the cerebellum up... I believe it was something like this LINK. Since CM is still being researched, if you're going to get anything done, I would keep it minimal, especially because everything else looks ok. This is just my opinion and I am not a doctor. Good luck :) <3

13

Got me man, doctors be crazy. Seriously, they are very busy and sometimes stuff like this just happens. Also, awareness has been growing rapidly and that has made the diagnosis pretty "controversial." At this point, you have one CM specialist's opnion... I would definitely get 1 or 2 more. I'm sorry, i know it's tough.

14

How was your surgery and how do you feel now?

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How’d surgery go for you?

Trust me, I’m not WANTING to have CM…but just can’t live this way anymore.

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Wonder, I'm so sorry you are going through this. Seems like every doctor has such different opinions, that it leaves us to question ourselves. My first NS said I had 6-8mm herniation but it wasn't causing my problems and I was just experiencing headaches...lol. The second one who's supposed to be the best chiari surgeon in my area and she got all excited. She said "look there is absolutely no fluid around your brain, its just smashed in there!" Then she went on to comment about my severe balance issues and some cord compression on my left side from a herniated disk in my neck. Then when she asked me about my back and examined me, she is convinced that I have tethered cord also! That means another surgery on top of the decompression surgery she wanted to schedule right away. Oh, and this Dr told me my herniation is 1cm not 6-8mm. So I guess what I'm getting at is that I'm not sure who to trust. I know that things are much worse now than they were 8months ago, and I need to do something but not sure who I can trust cause the second one got so excited like she was looking forward to doing my surgery, and when I told her I would have to wait for the surgery because I can't do it right now. I asked if there is anything I can do in the meantime for pain control, she looked at me said the only thing that will. Work is the surgery, and she walked away. I don't think she was happy about that which makes me feel like she doesn't want to deal with me unless she can do the surgery right away. On the other hand she could be making this stuff sound worse so she can talk me into surgery. I'm not sure I can trust her. I had my thoracic and lumbar MRI done a month ago for the tethered cord, and yet to have heard from anyone.maybe it came back normal and they don't need to call but I'd like to know. Getting tired of being stuck in my recliner 90% of my days . Sorry I went on a rant about me, but I know how you feel, which Dr can you trust and do we really need the surgery. Hang in there and try to find another Dr.

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I’m thoroughly convinced if these drs spent 5 minutes with our worst day symptoms, their reactions and attitudes would be a lot different.

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You're right! I'm of the belief that no one should be able to give us advice or Dr's giving us the run around, unless they spend a day in our shoes. I guarantee they would be scrambbling to find medications and other treatment options. Then perhaps we wouldn't have to suffer through all the pain and misery that comes with Chiari. I call my body my personal torture chamber! Can't get away from it and no one will help.

19

I had the full compression: skull decompression, duraplasty, and laminectomy. The surgery completely changed the pain. Before I had a severe, constant headache. Since surgery the headache is NOT constant, I can go days with no pain. Dizziness is 90% better, nausea is 90% better. I have another problem though… I think I have a cranio-cervical instability due to EDS. A few months after my surgery I got a severe headache that did not respond to meds, it went away only when I immobilized my neck with a neck brace. It’s very important for chiarians to know if they have eds, or hypermobility, because if they do they need to rule out instabilities before decompression.

Im thankful that I had the surgery, and as long as I wear my neck brace I feel pretty darn good. Headache is not gone but Soooo much better- I am actually enjoying my life now. Also my surgeon was able to cut away brain adhesions and saw several neuromas (both due to the Chiari) during surgery. if I never had the decompression the adhesions and neuromas would have continued to grow. I think that my decompression was only the first half of my Chiari solution, I’m waiting to see another surgeon about the instability.

Even as is stands now, I feel my decompression was a success. I would do it again without blinking an eye. But For me, I was always going to have the surgery, since the second I found out I had Chiari. I felt the odds of a good outcome were in my favor, I was willing to take some risk. It just resonated with me. I think as you continue on your own journey you will resonate with one way or another too. Follow your intuition.

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Hi first of all I am in your area and I saw Dr. Batzdorf can I just say he told me the same thing! Now here I am three years later with the same symptoms and now I am going to Dr. Oro in Colorado to finally get a real specialist to give me the final opinion. I would keep going until you get the answers you want. I hope that helps!!