Any syrinx should be something to monitor if they are confident it is not causing u issues, but a syrinx left untreated that grows larger can cause perm nerve damage....and the CSF obstruction can cause a syrinx to form, so my NS did surgery so a syrinx would not form....so not sure y if u have Chiari and most likely a CSF obstruction since u already have a syrinx, they feel there is no worry or need to move forward with treatment....may indicate u need a Diff Dr....
My concern is that I have a syrinx, but it's only 3 mm, so the doctor said it isn't even a factor. Is there a certain size of syrinx they base their decision on? I know my doctor isn't concerned about a chiari herniation under 9 or 10 mm so I am wondering if there is a certain size of syrinx they consider important?
Selma is so right.. make sure you get a cine mri or a csf flow study. Chiari is just a diagnosis but most docs won't think much of it without a csf full or partial blockage or a syrinx. But so many of your symptoms sound like they could be chiari.
Thanks Selma..you know you are absolutely right..they would definitely have a different respect for their patients. :o
I will do @ the health pages. I do need me a good doc. And, will keep those Vit. levels checked.
I am just concerned that I have something going on in my head. It feels like there is something wrong in there. I just pray that they find it soon.
God Bless you.
I agree, if just the Drs that brush us off could spend one day in our shoes I do not think they would be so easy to brush another patient off.
Use the list in the Health Pages and do look for a Dr that specializes in Chiari and related conditions Adrenal issues can also be related.
I would check ur Vit levels on a reg basis...just to be sure.
Thank u for helping me get an idea of what to do. I need a Chiari specialist..because I feel that all of this could be caused by it. I hurt and feel stiff in the back of my neck all the time. I keep a dull headache that sometimes, I don't think that I feel anymore because I have it so much. I just want to go in the right direction. I am so sick of going to see docs..ugh. :o It seems like all I do and still haven't found the answer, I don't believe.
I did have a low Vit. D level..it was 19 and now 39 or something like that. I take a large amount of Vit. C a day for my Adrenals and so many supplements..sooo many. Turmeric, Licorice, Omega 3, Vit, C, D*(2000 IU's a day-put it in my Coffee), Vit.E, CoQ10, Vit. B6 and i am sure I am missing some. I use Essential oils too...and they really help calm the mind. Love them!!
Should I get another panel done to recheck my Vit. levels?
I am glad that ur doing better. :) I can only imagine what u have been through. If, only others could step into our shoes and feel our pain...they would jump out real fast.
God Bless u girl. ^_^
It sounds like u do not have a Chiari specialist use the Health Pages and look at the list of Drs we have to use to research Drs as the list is not a referral nor an endorsement.....
As for the herniation being small...that has no indication of how it can affect u some with the smaller herniations have more severe symptoms then those that are longer, it is more an issue of how wide is it and is it creating a CSF obstruction....so a CINE MRI is indicated. I am sure I shared this with u b4, but stands repeating....
BTW- I am doing really well post op...I saw and continue to see improvements each yr that passes.....I still have pains from related conditions that I have but the main issues I had b4 surgery are gone.
Pituitary glad issues tend to go along with Chiari, as well as empty sella....and a few with addisons....
Chiari's symptoms are similar to MS.,Lymes and Lupus that my Drs did testing to rule them out as well....so even tho u feel that was an issue it may just have been the Chiari....but, as I said I had testing so it is always a good idea to rule them out.
Have u looked at all ur vitamin and mineral levels they can also affect brain fog so do check Vit D, B12, and magnesium and potassium.
With my memory..I forgot the most important thing. Thank u for the prayers. I will keep u guys in my prayers. Keep thinking positive and keep God close at hand...He will always lift u up. ^_^
Hello, Selma...I know that it has been a long time and time for me is crazy. I can't remember anything anymore and the pain in the back of my head is awful..not mentioning the agony that my legs put me through. I wonder, if they could all be related..or from different things.
I wondered @ that too...if, I was taking the right thing for the AD or not? The doc only put me on Hydrocortisone, but girl..I felt like I was dying and wanted to die almost, because I couldn't take the pain at times. I am not suicidal or ever could I be. I trust that The Lord will get me there..and all of this has humbled me immensely. Everything happens for a reason...and I have learned to accept that. How are u doing? I know that u had Chiari surgery and how are u doing with it? I hope well. It sounds like ur still a going.,.and glad to see it. :)
When, all of this started back in the fall of '06..I had just had the ACD & F spinal diskectomy(C5-C6) and felt it was coming from that. But, during a nerve block..I got hit by that long needle that they stick in ur neck...and girl, then I had more probs. I started getting so many different kinds of pain that I found myself laying in bed a lot more. Then, in '08 I pulled a tic off of me and seemed like I took a drastic turn for the worse. I thought for sure it was Lyme and so, I got tested. (4 neg. test results) I am suppose to go to a Lyme literate doc and they will straighten that out...ahh...ohh I hope that I haven't forgot that now. I know that I wrote it down, but...hmmm. :o
Now, back to the Chiari. Well, I was dx'd with a CM..small it says. (6.5mm) which, I do not think is small. They say anything over 5mm causes neurological deficits...and that makes sense to me.
I was dx'd with the CM in '06, right after the surgery in my neck. The empty sella and AVM was dx'd in '08, after having SO many symptoms. But they said that I was probably born with the AVM and not to be worried @ it. I want to know why it hurts all the time there then. :P
They didn't say anything @ my Pituitary at all then and I had no idea that empty sella was. I hadn't been dx'd with Addison's then though should have by then...but, here now and just want to be well. Fwheww it took me a while to get all of that out and wrote down...but I have done a lot of suffering to get here, where I am now. I am glad at least, they put me on the Hydrocortisone for the Addison's and it has helped, but I still am not well. I have to take it easy and not over do IT, but that is hard to do...and stay stress free...right..
I am energetic kind of person and love to work. Sooon..I hope that I will be able to get up and go more and do for others...for a change. But for now...looking for health. I pray health to you all. Thanks Selma...for listening to all of my chatter and I am sure it was confusing, but that is my brain right now. Plus, I get so lonely stuck back in this room..secluded from everyone,,that I feel like I been let out of a cage, when I can express myself. I just wanted to say that you are a good person and can tell that you care for the well being of others. God Bless. :)
Hi...it is over a yr since u posted here last....wondering if the meds for ur Addisons are not what they need to be as this could be from that condition...and who knows as u seem to have so many other issues going on...I thought for sure u were up and about by now...sorry to hear u r not.
Many with Chiari do have issues with the Pituitary and Empty Sella...so that could be Chiari related, but the Addison's seems to hit those with Hashimoto's which is an auto immune condition many with Chiari are prone to....so another possible reason as to how and y....but it seems u need to treat them all to help ur situation and I have no clue what u r being treated for....
Have u been to a Chiari specialist?
I want to thank you all for your comments and support. I am still in bed most days. If, I do anything...to use a muscle. And, anything that we do...uses a single muscle, besides all the many it takes. It is hard for me to reach even. I have days where I just lay in bed and wonder what happened to my life. I never envisioned being stuck in bed. I am an outgoing person..one who likes to be around people. I sing..or I did sing. Now, I dream.
When, I...finally got dx'd with Addison's, I thought I would be so much better..but, I am still having a lot of problems and episodes. Since, we talked last...I have had a few episodes that really worry me. I woke up one night..tingling all over...heavily, like hard raindrops were hitting every part of my body. My face was extra numb..because it stays numb on the left side all the time. So, this was extraordinarily strong and noticed that my tongue was getting number and I thought that I felt pressure to go to the restroom and got up. When, I did...the room went dark and it was spinning. I felt like I was going to faint. I thought, if I went to the restroom...maybe, I would feel better...but, I was wrong. I didn't feel better and knew that if, I didn't lay down on the floor...I was going to hit it! I lay there and I prayed. I really thought that I was a goner. I wanted it to go away and I got up and made my way to my husband..who, was sound asleep at 4am. He didn't hear me say, "Call 911. I need to go to the Hospital." But, I wound up laying on the floor again and he covered me up and gave me a pillow. I woke up the next morning on the sofa. I was fine and didn't feel bad at all. I don't understand what happened to me. I found out that an "Empty Sella" is more than what I had thought. It is over the Pituitary...and I have Addison's..and just trying to put all the pieces together. I have pain over my temples, mostly left...and if, there is pressure over my Pit..then, couldn't that mean I could have a cyst or something there that they are missing. I don't want that episode thingy again...IT was horrible. :o
I have pain over the left back side of my head. Where the AVM is..so, it is close to the Chiari...and the Empty Sella...and also, where I had a bone spur removed from my left ear. So, where is my problem coming from? Which one would be responsible...or all? :P I just want answers and get to the BOTTOM of it. Also, I had an ACD & F, which is a spinal diskectomy of my C5-C6 and that could even be a part of all this...since, a doc did say that my neck is swollen and others say it too. It is visible and I feel it. It will get tight and knots up too..in the muscles there. I have to rub Moxibustion on it and that helps loosen the intensity some. The leg pain is intense too and all day,, I run the massager part on my adjustable bed. I don't know what I would do without it. I have actually burned one motor up..and that is no lie. My legs are that bad and what i worry..is that the Docs just don't see how bad things really are, but I smile through the pain..if, I can. IF i am having a bad day...I might can cover, but the really bad ones..I am in bed. And, that massager is running.
And, to add to the mix...my JAW is hurting..right beside the bone spur surgery. I don't know where this is coming from????
I need to know...What should I do? Where should I go? I have seen where there are wellness places that boost a person's immune system and show them how to eat...for wellness. "Your food is your medicine and your medicine your food." But, I can't afford that and know that I would benefit...but I have to decide, which I need to seek out to do first. Oh, I donno..things are mighty hard around here and my mom/dad are in their 70's and mom is already sick herself. I just don't want to add to any more that is already going on. "There is enough trouble in a day."
I need to find a Doc that knows what this is. If, it is my Pituitary(Addison's), CM, AVM or the ACD & F, or the ear surgery.(Bone spur removed from there). How am I going to do that? What the heck? hmmm...a definite canumdrum....HELP!!
Thank any who took the time to read all what I deal with. God Bless you. I just pray that some how, I will find that right Doc...who can give me the answer to the root of the problem. So that I can get on with my life. :)
Hi Karen.
I'm sorry for the problems you have.
My 16 year old son has Chiari Malformation (6mm) and along with other symptoms he has finger twitch, jerk..... very hard to explain but here's a short clip of it.
http://youtu.be/suqVWf3O0nY
Hope you get the help you need..
Jackie :)
So sorry to hear your having all these problems. I know how flustraiting all this can be. I would difintelty do what Selma suggested. Get a Chairi specialist and have all your reports with you so it will help with your visit. It's hard for other's to understand what we Chairian go through. Your in my prayers for better day's and better answers for you.
Linda :)
Hi Karen, it's been a while since u posted, the last time I think the Drs were trying to say u had TOS....
Have u had ur vitamin and mineral levels checked...they can add to the muscles spasms and things and make ne neuro issue like this worse.
Many of us do have multiple issues going on at once making getting a dx that much more difficult.
Since u have a Chiari dx u really need a true chiari specialist to help u sort all of this out....I am sure with all u have going on, that u have copies of all ur MRI's and reports, if not request them so u can use them to get an opinion,
Sorry things have not improved for u since we last spoke.