If not Chiari, then what?

[LLMomAndWife]

I wonder what other rare disorder produces Chiari-like symptoms, but is not Chiari. My chief complaint is a pressure headache. It feels like someone stuck a straw in my head and blew it up like a balloon. I sometimes feel like my head will pop off. I keep reading stories of people with symptoms like this and had unsuccessful Chiari surgery- the surgery did not relieve the pressure. This is my greatest fear. I wonder if some of these people aren't being misdiagnosed and decompression surgery would not fix the problem. Is there another disorder that is the culprit and people are wrongly told they have Chiari. If there is some other rare disorder, I'd like to research it. I'm pretty convinced what I have is rare and I don't want it overlooked just because the medical establishment is quick to dismiss rare potential disorders.

[selmaS]

   In my listing- intercranial hypertension or ICP is what Drs refer to now instead of using the older term PTC pseudo tumor cerebri....but they are the same condition.

[chiari1t3]

It  make sense to check for   those  conditions  before  the surgical treatment.

[Smkarnavas]

Another possibility is pseudo tumor cerebri.

[selmaS]

  I am glad I was able to be helpful and know too well the isolation of this condition....know you are not alone <3

  

[LLMomAndWife]

Thank you for this very helpful post. The right doctor is so crucial. I'm hoping Dr. Henderson in Maryland is in that category. I'll post my experience with him when I see him after I have my MRI studies. I want to thank you for being so helpful on this site. You respond to so many posts. Sometimes you're the only respondent. It so lonely to have medical issues and no answers and feel that no one cares. I've felt comfort in hearing from you. Thank you!

[selmaS]

  Hi...the other conditions are not rare and neither is Chiari..well informed and experienced Drs are rare...but not our conditions....one Dr in giving a speech on it said there are more with Chiari then MS.

AS for what conditions mimic Chiari symptoms...MS is one, and one all of our Drs tend to rule out in the beginning...lymes, and lupus,, then we have the related conditions...intracrranial hypertension, POTS, Syrngomyelia, Ehlers-Danlos, tethered cord,CCI,retroflexed odontoid,

Looking at those with a failed surgery....we must also look to the Dr and what was done during surgery....was the Dr a true Chiari specialist, were ALL related conditions ruled out and precautions taken if the patient had them?

So many Drs ignore EDS...do the decompression...the body may reject the patch used and a cycle of worsening symptoms and surgeries continue post op....however had the Dr been aware of the EDS and not used a dura patch made of anything but the patients own tissue some of what occurred may not have...

It is VERY important to research your Dr....do not go with the first one to offer surgery and KNOW why surgery is being offered...( remember a surgeon gets paid to do surgery)  Make sure your Dr is looking at everything  related and addressing them all.....

If you do a decompression and you have another underlying issue it can appear that surgery failed...when in fact the Dr failed to address them....there are a few members here that have addressed this very topic.

Having the right Dr is key and to find one and know it we all have to educate ourselves.