Hi and welcome to the Chiari forum.
First let me start by saying, you need a true Chiari specialist and not all NS or NL are experienced and informed enuff to help you correctly and completely....as there are related conditions and b4 saying you did not have "typical" Chiari symptoms what other tests were done.
A LP is ok as long as the tech doing the draw knows about Chiari and does the draw slow and steady as it can affect you if it is done to quickly.
But it is needed for medical reasons, so I would not avoid having it done, just make sure where you go for it they are well experienced doing them for those with Chiari.
ICP or PTC are the same thing and is a related condition to Chiari...it is possible to have had one cause the other....so if your Chiari is acquired and is really low lying tonsils then you may have had PTC first....
Chiari symptoms cycle and since it is a congenital condition it is possible to have more symptoms then you realize since we have had this since birth we can consider many symptoms to be "normal" and not a symptom....so more testing is needed at this point to know just how your Chiari is affecting you and your overall health.
thank you for the response.
I had a question, could the cerebri cause the Chiari? is that even possible? (Or not cause it but cause it to become worse)
What are the typical symptoms of Chiari? I Tried to google it but it didn't really gave me much to go on
Hi yes, that is what I meant by acquired Chiari or low lying tonsils...it depends if your cerebellum is small then it is true Chiari if not, if the cerebellum is the right size then you may have had PTC first and it caused the tonsils to herniate.
We do have a list of Chiari symptoms but not all of them are "offical" even true Chiari specialists do not recognize all the symptoms we ALL seem to have in common.I will try to bump that list up for you to see.
I'll just leave my experience here….
I just had another spinal tap, but to look for the opening pressure to confirm PTC. It was confirmed. (Yay, I guess? We all suspected it anyway)
My doctors and I are all pretty sure I have EDS, but no one has made an official diagnosis. But I had a spinal leak from the tap and I had to have 2 blood patches to try to close the leak. They both failed. Leaks are very common in EDS.
Now, I felt wonderful without all the pressure, until the leak caused too much CSF to be lost, then it was the other extreme. But, immediately after the LP, (I had 15 cc drained bc we also needed to test fluid), my eye sight was much more clear and the blind spot I've been having went away! I felt so good, that I was heard headed and WALKED out the hospital. I'm so stubborn. I'm sure that's why I leaked! I'll never learn! hahaha Don't do that please!!!
I was decompressed, and my actually NS did the lumbar puncture, so I was in good experienced hands! The LP did not mess anything else up, and it did give me temporary relief.
were you ever given any diuretic medication? i heard those help but i dont know.
i keep hearing that losing some weight will help cure the PTC and the pressure but since i have chiari it makes me wonder if it will make any difference
thank you for the replies, I feel a little bit less scared now.
Yes. I've been on Diamox for years. It makes your hands and feet tingle, and makes things taste metallic, but I'd rater experience that than headaches. I heard losing weight does help, too. I'm 5' and about 95 pounds, so the weight thing doesn't make a difference in my case. Since you have Chiari, I'm not sure either if it would make a difference.
Being on Diamox makes things taste bad, especially sodas! And you're supposed to avoid caffeine anyway. So there might be some unintentional weight loss if you do drink sodas or like to drinks things from cans. Anything in metal tastes like you're sucking on pennies.
As long as you keep up with your eye appointments, it's not so scary for the vision aspect. And my eye doctors work well with my NL, so they can keep each other updated if I need a dosage increase or whatnot if there's extra pressure on my optic nerves.
For yrs, Drs thought it those that were overweight developed this and they felt weight loss was an answer....but many have shown that is not a true or correct assumption ..as there are many thin people with this issue, so weight is not the factor.....
what was the dosage they gave you of Diamox? i really dont want a LP but the doctor might say I need it,
yeah I understand. i just feel so lost.