Im very frustrated with all the lack in Montana. I'm trying not to overreact with doctors here but I am not feeling very well at all. I think I have a tethered cord. Most of my MRI show a Chiari but my flow study didn't show one at all. My head has recently had increase pressure, I cant touch it in any way and I think its shape is shifting. I miss my sunglasses. Of course there is a lot more to my symptoms and story. But today its a forced smile.
I'm trying to find a doctor, a Chiari doctor, that will look at it. I am emotionally going back and forth with it cause my docs here are saying its nothing I'm making up the symptoms and stress is causing pain. But I know that's not true. Single mom, little support and no idea what to do.
The only solution often times is PERSISTENCE. You need to find a primary physician who is willing to research and listen to what you've found, your symptoms, etc. They have a vast resource of specialist in your state. While I doubt there are an abundance of Chiari specialist in Montana, a specialized and experienced neurosurgeon may know more about it.
I'm not sure I understand what you mean by your flow study not showing one? Are you meaning that your flow study showed regular, uninterrupted flow? Also, was it an upright or lying flat MRI for CSF flow study? This can make a HUGE difference. You said that "most of your MRI" showed Chiari, I'm not clear on this either. While herniations differ in size from image to image and dr to dr, usually it's there. Also, who ordered and read your MRI? Was it a regular doctor or a specialist? And if Chiari showed up on the MRI, how can your doctors deny it's there?
Also, your profile says: "What treatments have you undergone? What treatments are you currently undergoing?A lot the entire theme park twice over" What precisely have you tried in terms of what medications, any surgeries, home remedies, etc. Also, who was able to prescribe the treatments?
I'm, not doubting you by any means. Just trying to help a little. More information is helpful to give more precise advice and suggestions! You've found a good place though! :D
Sorry. I can get confusing, I cant get a referral to a neurosurgeon and we currently do not have one. The flow study was laying down and the flow was normal the Chiari didn’t present in the images, says the radiologist. The Chiari has been on all other MRI but yes the doctors are saying its got no realation to my symptoms.
In regards to treatment I have under gone. I wish I had better answers. I have so many labs done, images, meds, all though I’m notcurrently on any. Yes that includes pain medications. Before my doctor told me recently that I needed to go out of the area for further help (no specific referral) I did a sleep study, that was clear. And a neuron pushcart exam (that showed some low scores and impairments.
That’s about it. Any other questions or suggestions are welcome.
Sorry. I can get confusing, I cant get a referral to a neurosurgeon and we currently do not have one. The flow study was laying down and the flow was normal the Chiari didn’t present in the images, says the radiologist. The Chiari has been on all other MRI but yes the doctors are saying its got no realation to my symptoms.
In regards to treatment I have under gone. I wish I had better answers. I have so many labs done, images, meds, all though I’m notcurrently on any. Yes that includes pain medications. Before my doctor told me recently that I needed to go out of the area for further help (no specific referral) I did a sleep study, that was clear. And a neuro-phsyc exam (that showed some low scores and impairments.
That’s about it. Any other questions or suggestions are welcome. I gathered images and reports will send them to Dr in AZ. I figure it cant hurt. Though I have got no clue as to how Im gonna get there.
Smiles, stick with it. Your docs are doing what they think is right- they just don’t know so can’t help you the way you need. The size of herniation (measured!) depends on your position for the MRI, so yes, each can be different. Get the best Ns you can, one who screens for EDS and CCI. Press the tethered cord concern… Nobody WANTS any of these conditions, it’s not made up. Stay strong you are not alone and we get it that you are having a rough time. So sorry friend.
Hugs and love, Jenn
Will someone explain more of CCI? I personally think there is EDS, a Chiari, possible feathered cord but I have not read on CCI yet. I sent info and scans to Little in AZ, does anyone know if he will look into the CCI so I do not have to have repeated surgeries?
Thanks for the feedback, I am grateful for every bit of it.
My doctors don’t know what they are doing and they have admitted it. They are will to run whatever tests I suggest, that is how I got the CSF flow study done but also keep in mind it was hard to find a MRI place that was actually capable of doing the test. I love my beautiful state, I call it home and always will but we are severely lacking in the medical community.
Info on CCI
CSFinfo.org
Videos
Great to metro area
All videos about CCI and EDS
So I took a look at info from jcdemar and now have a lot of concerns. Is this the consensus in the group? I know I probably have the hypermobility EDS, the Chiari, possible tethered cord and from what I can tell, it sounds like CCI as well. This is disturbing. I have no medical care here for all that. Help please!
Thank you Razzle5 for trying,
I don't have the energy for this and I am alone in this with two kids.
I don't need any more complications I just want it fixed and over with!
Hi Smiles,
don't give up and don't give in!!..my very first MRI the radiologist wrote that i had a perfect brain! little did he know what he was talking about...i had such sever headaches that my PCP sent me to a neurologist, he then said to me you have Chiari BUT DON'T WORRY most people live with it all their lives, no need for surgery !!! i saw 2 more NS after that, all of them said you will be fine ,yes you have Chiari but no need to do anything.. in the mean time i was feels worse i then went out of state to a Chiari specialist.i did not need a referral i just called and made an appointment... my point is you need to be your own advocate, keep pushing for answers!!! you said you have 2 children, they need you so don't give up
Thank you Nykki I will call them. I do have state insurance as well as federal.
Missoula is a two hour drive but that's way better than nothing. I was thinking Billings should have something (four hour drive) but haven't found much info there.
Thank you...maybe I really am lost. What kind of doctor should I be looking for, qualifications, specialties?
I can understand how you feel,as for myself it was the same.It seems as if they are insulted that the tests didn’t show anything therefore we should just go home and be well!! You are in a good place,we know what you’re saying, Dr.s are often rude.I found help when I found a specialist. In the chiari field.I know without him I would have never gotten well.You need a specialist that was the key to my getting well,no matter what they say there doesn’t have to be a 5+herniation to have severe symptoms.I had a .5 herniation and the symptoms were hell.Keep your head and find a specialist that’s not always easy but it is the answer so much of the time.Good luck