Fighting for Chiari Answers

Question

Hi, I have been a lurker on this website for a while and finally got the courage to join. I am 27 and have been having headaches with other symptoms since I was 13. I finally got a Dr to listen to me about two years ago and she ordered and mri. It showed a cavernous malformation that had bled ( the intense headache the night before is what led to the mri) and a herniation of the cerebral tonsils at 5 cm. They referred me to a neurologist and he said they were both incidental findings and I was having migraines. To make a long story short, I'm on my third neurologist after doing my own research. All my symptoms matched Chiari and he agrees with me. I'm scared because he wants me to have decompression but I'm a teacher and I can't miss the first couple of months of school. He allowed me to schedule it the 30th of November. I don't want to lose my job. My dad doesn't want me to have the surgery. Could I please have your opinions? Thank you!

selmaS · Answer

That Charlie horse type feeling is what can leave lasting pain after and is most likely due to low magnesium or potassium, Vit D.....so do have your Dr check your blood labs Also rule out EDS as it could be an underlying issue.

mindyk14 · Answer

Mine is mainly my neck, arms and calves. Sometimes if I exert slightly I get a Charlie-horse feeling.

selmaS · Answer

Yes I did get muscle tightness and I was DX'd with EDS which is a cause of my muscles being tight.

 I also did get some cramping and that too could be linked to EDS as well....as EDS can cause us to have mal -absorption of vitamins and mineral and low levels of some vitamins and minerals can cause muscle cramps.

 Mine were mainly in my legs and back.

selmaS · Answer

You are right....we do not have a list for Kansas....but like many of us you may have to travel to get to a specialist as that is better then going to a NS that knows what Chiari is, they need to know about ALL related conditions as they can and do affect the outcome of this surgery.

 Call the facility that did the CINE study and request a copy of it on a disk then ask for a copy of the written report....going forward request copies of ALL testing even blood labs. This will help you with getting other opinions.

mindyk14 · Answer

I have had the cine Mir 2 weeks ago I'm not sure of the exact results but the neurologist said I have limited to no CSF flow but he did not mention sryinx. My cavernous malformation is in my right-hand side frontal lobe. Nobody seems to be concerned about that. 
He seems to think that I have a good chance to improving after surgery, but he is not a specialist. It is hard to find those in Kansas. I have to admit he seems knowledgeable about the condition

Thank you so much for replying quickly!

selmaS · Answer

Hi and welcome to the Chiari forum.

 First,, this is up to you if you should have it or not.....not the Dr....2nd what other testing was done? Did you have a CINE MRI to check for an obstruction to CSF flow?..other related conditions?

 And may I ask where your cavernous malformation was located? The dura, spinal cord?

 Recovery depends on what else is going on and it took me a few yrs, b4 I would have been able to return to a job....and even then it would have been  part time and limited duty....Surgery is not a cure or a fix, it is done to restore CSF flow.....symptoms can also worsen if related conditions are not found b4 surgery is even considered. Make sure the Dr is a true Chiari specialist ....having the right Dr is key...