So our daughter was diagnoised back in June with Chiari Malformation 1 with a 5 mm herniation. She's had Migraines, headaches, numbness in her hands and feet, blurry vision, black outs, trembling hands, aches and pains, ringing in her ears, extremely sore neck and shoulders but has gone for 3 MRI's since June and they told her today that her herniation has shrunk or that the MRI tech have difference of opinion one says it's 5 mm and the other today says it's 4.5mm so since it's not 5 mm she doesn't have chiari anymore? Huh I thought there was no cure . He told us when she was 5mm she could not play contact sports as it could kill or paralyze her and now that it's 4.5mm she's fine to go on with life with whatever she wants to do live her life and contact sports are ok because she doesn't have it anymore it's not symptimatic and if she gets anymore symptoms call them back but they are discharging her as a patient at this point as a patient. So for 2 months we've been scared to death and now it doesn't exist. Someone help us out here, we're a little confused?
You may want to consider researching NeuroSurgeons who are very familiar with CM. They should also be doing an MRI of the spine and looking at CSF flow to see if there's any blockage.
Secondly, maybe start ruling out other possible causes: diet, exercise, stress, dental, eye, thyroid, pituitary, etc,... Has she tried migraine meds? Maybe try therapies like yoga, massage, biofeedback,...
My daughter has been going through this for nearly 2 yrs. We have pretty much ruled out everything under the sun. It's made us feel more secure when considering surgery for the CM; knowing we've been thorough. Seems to make the NS feel more confident in his decision to move forward with surgery too.
Any herniation is still Chiari. Less than 5mm is old thinking. It depends on severity of symptoms and how much the CSF flow is blocked. You need to find a ns that treats Chiari patients. They are the experts.
We just had the full MRI of the spine, they said her CFS flow is good and there is nothing going on with the spine, no syrinx or tethered cord. Have been to eye specialists, had blood work done, and have been going to ortho and dentist regularly. Migraine meds have been helping tremendously , she use to have 2 migraines a week and daily headaches, and they have cut that way down with the new meds she's on so that's a relief. Her doctor said that she suffers from migraines not related to Chiari because it doesn't come from the back of the head . We have gone to Bowen therapy in the past and that has brought he a lot of relief from her migraines and body pain. He said she's an active kid, she's in great shape, exercises and maybe the sports has made her achey and tired. We are in Canada and I have not found anyone here personally myself that is a chiari specialist just neuro's who treat it. While we were at hospital there was a boy about the same age as my daughter in the room across from us and our nuerosurgeon told us his CFS flow was being blocked so he was suggesting surgery for him so he does seem to know what he's doing when it's symptomatic, just seems to really not treat is as chiari if you're not symtomatic all though she still suffers from a lot of symptoms. I do have to say other than the pain in her neck , shoulders, and back and some stomach issues, she hasn't had as much numbness or anymore black outs, is it possible to improve without the surgery or for it to shrink on it's own?
Gma7938 said:
You may want to consider researching NeuroSurgeons who are very familiar with CM. They should also be doing an MRI of the spine and looking at CSF flow to see if there's any blockage.
Secondly, maybe start ruling out other possible causes: diet, exercise, stress, dental, eye, thyroid, pituitary, etc,... Has she tried migraine meds? Maybe try therapies like yoga, massage, biofeedback,...
My daughter has been going through this for nearly 2 yrs. We have pretty much ruled out everything under the sun. It's made us feel more secure when considering surgery for the CM; knowing we've been thorough. Seems to make the NS feel more confident in his decision to move forward with surgery too.
I know how horribly upsetting this all is. My daughter who loves life and is so smart and super active has been battling to try to stay that way for nearly two years. Watching her suffer is hard to bare. She was told early on that since the pain wasn't always in the back of the head, in that "classic" area, it was out of the norm. Recently, her NS (does 1 or 2 CM decompressions a week in Seattle) said that yes, it is a bit out of the norm, usually only about 25% of his CM patients present that way.
AND HERE WE WERE thinking that she presented like 1% of people and it was oh-so unusual. Nope. Headaches can be in different parts of the head, last 24/7 or come and go he said.
Too, he told us that yes, symptoms can change or improve. I did not ask how or why (if there is an answer even). I am wondering if growing might have something to do with it? Also, the tonsils do pulsate with the heartbeat...idk...?
What I do know is the kids look to us for answers and they are hard to come by :(