I feel hopeless

[Thisonesforthepast]

I've been on here on and off for a year now and I was told I had a Chiari Malformation type 1 when I was 10. 6 years later, they tell me they don't see it anymore but my symptoms are constant and slowly getting worse. They tell me it's just normal migraines but this is not normal. I recently had an LP done and the hole didn't close on it's own, so I had a blood patch done. They couldn't get blood out of me and had to get 3 different arteries after sticking me 11 times. She got the needle stuck between my bones and had to restick me. The next two days, I was feeling great. But it is all coming back and worse than ever. I constantly feel like crying and there is no way out of this for me. What do I do? I want to consult a neurosurgeon, but I'm not sure if they can even do anything. I looked at my MRI's and I see it still slightly there but nothing to be noted by my neurologist. I need advice.

[Ball123]

Aha, I see.

[Thisonesforthepast]

No. The blood patch worked perfectly fine. It fixed the hole but the symptoms to my Chiari are worse. I was diagnosed 6 years ago so the LP has NOTHING to do with this. But thanks.

[selmaS]

  Hi we do have one Dr listed for Oklahoma....not sure about this Dr or it's proximity to you....do some research.....

  http://www.medhelp.org/posts/Chiari-Malformation/-Chiari--Drs-list--links-2015/show/2415432

[Elisaandbucky]

Another thing to think about is to track all your symptoms and keep a detailed pain journal to help you with any appointments you may have with specialists in the future. I wish you comfort.

[Ball123]

This post LP headache you had usually goes away with a blood patch but not always. The reason is that they made a small hole in the dura that has not healed. Through this hole cerebral spinal fluid is leaking out. This causes a lowering of the pressure inside the skull. The condition is called intracranial hypotension, not to be confused with intracranial hypertension that means too high pressure.

What you need is one or maybe several more blood patches to seal the leak. You might even need surgery to seal it in the end.

Intracranial hypotension can cause "sagging of the brain" which is often misinterpreted as chiari. But it is something completely different and you can not have a chiari surgery while you are still leaking. So the leak must first be healed before any diagnosis of chiari can be made. This is important.

Visit csfleak.org for more information.

Chiari is not the way to go for you. At least not now.

[Thisonesforthepast]

I am in Lawton Oklahoma. The hospital I go to is in Oklahoma City.

[selmaS]

  See if your Drs will consult with a Chiari specialist.....some will do this once you forward your records....it may be what you need to do.....

May I ask where you are?

[Thisonesforthepast]

I just have an issue with the chiari specialist. There are none in my area and we can't travel unfortunately. Another reason they don't think a neurosurgeon could do anything for me.

[selmaS]

  I agree you should consult a NS, after you research them and make sure they are a true Chiari specialist....

When having a LP it is also possible to draw the fluids to quickly and pull the cerebral tonsils down further.....and you had a leak....so do go have another MRI to see if/what changes occurred after/during your LP.

Knowing if you have a CSF obstruction is important as is knowing what related conditions you may have as well.....

[Mel5056]

Oh hon if i were you yes i would go see a NS.  Make sure though you have researched that doctor and that he/she is a chiari specialist.  I would hate for you to find an NS and be told again it's not there.  Chiari 0 is real and can create havoc too.  A specialist in Chiari knows that.  It's the blocked flow that can create issues.  So for me mine tonsils decended 15 mm but i never knew i had it.  So my guess mine were long and skinny so to speak.  You could be Chiari 0 but have more blockage than I did.   Finding the right doctor and ruling out all the little sidekicks that chiari can bring is equally important.  I wish you the best of luck in your search and pray for pain free days.  Don't give up, keep fighting!!!!!!!!!!!