Should I give up thinking chiari is my problem?

[lasel22]

My chiari is 4 mm and was diagnosed by a neurotologist who thought my symptoms were from chiari.  Neurologists think I am having anxiety and neurosurgeons won’t operate since they don’t see significant compression.  I have balance problems, dizziness/vertigo, tingling in legs and feet, ringing in ears, and generally feel weak and unable to function properly and need help caring for my kids.  Has anyone else experienced this “uncertainty” from doctors and and ultimately found it to be chiari or should I just let this go.  I’m scared that I will be treated for anxiety and it will be the wrong thing to do because it may really be chiari.  I did send my images to the chiari institute in long island and they said they didn’t need to see me.  I also know there were lawsuits brought up against doctors at TCI and some doctors lost their license.  I’m wondering if I may be in the “questionable” category and no doctor wants to risk treating me and getting in trouble.  Any advice?

[Ball123]

Effexor for example might work on anxiety and is very effective on migraine too. Maybe you can discuss this with your doctor, it can be worth a try. And if it doesn't work that might indicate something else. You should start with a third of a "pill" every day, increase to two thirds after one week and to a whole pill after three weeks. Also taper down when you decide to quit it.

Propranolol and amitriptyline might also have anti-anxiety properties.

The SSRI stuff usually are not very effective on migraine. But on the other hand they might help you to rule out anxiety.

I also think you should contact a chiari specialist if you have the opportunity because even if you don't have chiari, you can still have cranio-cervical instability issues and they can be very hard to spot. Chiari specialists are the best at spotting these conditions..

[lasel22]

I have two girls 9 and 5 and they have been great through this.  They know mom is sick and not to push me too hard but it kills me not to be the mom they should have.

I am going back to my PCP and am going to start at square one.  Maybe there is something else entirely going on.

Thanks for the support.

[Elisaandbucky]

How old are your children?

[Elisaandbucky]

My compassion goes out to you regarding the runaround you seem to be getting. Always listen to your own body - not necessarily to an unspecializing doctor. Check out the link of doctors on this forum to see if any others are in yout vicinity.

Another thing is that the difficulties you are having, coupled with the symptom will cause anxiety. But the anxiety will not go away without relief of your symptoms. Work to seek a second opinion; your neurological health is crucial. I wish you success.

[lasel22]

Thank you for that advice.  I completely agree.  I just want to feel better and if I have to go through the "anxiety" route in order to get better or rule it out I guess I should do that before just finding a neurosurgeon that is willing to operate.  God forbid I still have the symptoms then my anxiety would be through the roof!!

My symptoms are pretty specific, I never just get randomly dizzy or have vertigo.  It always seems to be pressure related, like when I need to engage a lot of muscles or laugh hard, sneeze, etc.

Thanks for the advice.

[Ball123]

There are lots of people like you. These borderline cases are so hard.

I think that if the doc thinks you suffer from psychological conditions then he should send you to a specialist first. This happened to me. But in my case the psychiatrist very quickly ruled out a psychiatric cause. He said my symptoms were too specific and too persistent to be of psychological nature.

So my recommendation if you want to pursue the anxiety road is to first hear what a specialist says about it. And if he/she thinks it might be anxiety then you must have some kind of treatment plan with a time limit.

I don't disregard the power of the mind but what you don't want is to end up going around feeling like **** the rest of your life with all docs just saying "it's nothing wrong with you, you are just a bit anxious" if in fact it might be a neurological problem.

[selmaS]

  Hi if you had someone that was at TCI  I would have hoped they would have looked for CCI, EDS, retroflexed odontoid etc....as it is possible to have Chiari and symptoms but the symptoms could be due to the other conditions and not  CSF obstruction.....so do have more testing and think about sending your med files for a 2nd opinion.

[lasel22]

there was no cine blockage

[lasel22]

I did see a doctor who used to work at TCI and he just says I don't need an operation.  He sent me for an EMG which was normal and did follow up with me to state that everything seems normal and I should be feeling better.  At my first exam I was showing signs of spasticity, clonus, and hoffmans sign then at my next exam I was normal.  My first exam was after I had been on Diamox and took a turn for the worse.  Then I gradually felt better over a period of weeks.  I am seeing my PCP to get a full workup and hopefully get some answers.  Neurosurgeons tend to just look at the images, make their opinion, and don't even listen to the symptoms.  At least that's been my experience.

[selmaS]

  First let me say no Dr lost his license and yes there were suits brought....that is all in the past and I had my surgery there at the time all this was going on....best thing I ever did....that said the Dr in question is no longer there and has his own Chiari center where he treats patients successfully.

Did you have a CINE MRI to see if there is a CSF obstruction?
Testing for related conditions? Many of the related conditions can cause similar symptoms as Chiari...and yes the ones you listed.....

If your Dr that you went to was not a true Chiari specialist it could be they were not well informed enuff to know what else to look at....do have testing for related conditions to see if they may be causing your symptoms.