I am currently waiting to see my Neurosurgeon, who I have been under for my Lumbar Spine issues (have previously had L4/5 laminectomy x2 and now need L3/4, L4/5, L5/S1 Fusion) after hearing from my GP that I have a 8mm "slippage" of my cerebellum out of my foramen magnum.
The ER doctor ordered a MRI and asked that they specifically look for Chiari, which I am now, very thankful that he did after reading many posts on here and on the web, however, I am now also VERY worried!!
I have had these symptoms for quite a while, glad that someone has finally sat up and listened to me, sad that it took one of my many "frozen" states to get them to notice (Does anyone else experience these?? Where you seem to not be able to move a single muscle, don't fall, and can sometimes then lead into an all out shaking party that your body decides to throw! I would call it a seizure, but there is no loss of consciousness!!) but does this mean that this is AS GOOD AS IT GETS??
I have read about surgery and so forth, but have not seen follow up, and whether people have had benefit from the surgery. Whether people would recommend surgical intervention or not.
What should I do in regards to going to the Neurosurgeon? I am really quite scared... I cannot drive anymore, I am not allowed to go anywhere alone, I have to constantly have someone with me,
Can anyone give a nervous girl some kind words of advice?
First of all ... A BIG HUG to you Faifee. It is very scarey some of the symptoms we get as chiarians. Yes I have had those "spells" I was told by one of my doctors that it is called sympathetic nerve response. For me I would shut down completely. Inside I was completely aware. All I could do was cry. Just tears for no reason while the rest of me went limp. I also tossed things a lot. Weird muscle reactions to stimulation through touch or just on it's own. I have seizure like bouts of spasms too... I have realized over the years with those that a muscle group becomes "charlie horsed" and I have to find the culprit and press down on the knot until it releases...then the rest of my muscles will relax as well and it eases me out of that spell. Also making a consious effort to relax my muscles (meditation) keeps them from happening to often any more....I have become a master of isolating muscle groups and forcing them to relax . It takes practice but you can do it. I have been working with myself for 12 years to cope with the symptoms of chiari.. and my suggestion to you is to learn how to be aware of what is happening and work on ways that work for you to ease the severity of the reactions your body is giving you.
As for a neurosurgeon... you have to just keep searching and interviewing until you find one that you trust and can give you informed advice on what can be done for you. I have thus far chosen no surgery because I havent had a life threatening situation to force me too.... surgery is not a cure it just assists with the relief of pressure to my knowledge...for me it is a quality of life decision and can only be made by the person who is affected.
Big hugs...and lots of strength your way...I hope this helped you a little bit ... You are not alone
My chiari was going to leave me dead or in a vegetative state within months so I had no choice in having surgery. My symptoms probably won't get much better than what I'm dealing with now but at least the surgery STOPPED the progression. I'm thankful for that. I miss who I USED to be a few years ago before I knew about my condition, but at least now I can have a future with my family and watch my daughter grow up.
In my own opinion, surgery should be the last option... If you get your hands on a good neurologist and neurosurgeon and they can increase your quality of life without getting the scalpel involved that would be better.
All that aside, make some friends here on this site, we are all in this together and can help each other.
My daughter has had her spine fused as a result of her Chiari. She has had a total of 6 surgeries and finally she is doing really well at the age of only 14.
For my daughter the cerebellum slippage caused the blockage of CSF flow down the opening that the cerebellum was blocking. This caused the flow to then go through the obix near the 4th ventricle and it is here where the fluid would flow into the spinal cord and how a syrinx in the spinal cord was created. So, when the cerebellum was raised the pressure on the syrinx was reduced and that is how the Chirari was addressed for my daughter.
If you research what the cerebellum does for balance, then perhaps you can find what the impact is on your frozen condition. It may be that the pressure on the cerebellum is creating chiari and the frozen states are a result.
I would hope this isn't as good as it gets, but I would tell you to research every single condition you have. My wife and I did and it was our research that assured us that we were heading down the right track and in the end helped to guide our surgeons also.
All the best.
THANK YOU... for letting me know I am not the only one FROZEN. It is so scary, and whilst I am a yet to be diagnosed Chiari person, as I do more and more research into this issue (I REFUSE to call it a disease or disorder!) I am beginning to see that I have more than likely found my diagnosis.
Recie, Thankyou for being so supportive, and thank you for the hugs!!
First of all ... A BIG HUG to you Faifee. It is very scarey some of the symptoms we get as chiarians. Yes I have had those "spells"
WHOOPS... Can you tell I am a first time user??
I thought that the replies would go to everyone separately, so now a group one.
THANK YOU ALL, for the positive feedback. Please note:
I have NOT been OFFICIALLY diagnosed by a Neurosurgeon as a Chiari patient... I want to make that perfectly clear, as I do not want to be seen as someone who has mislead people!
I am awaiting confirmation at an appointment, but an ER doc wrote it on a MRI slip, I have looked up the term on the net, have done a little bit of research, and after getting my results from the MRI, I know that I have an 8mm cerebellum slippage... whatever that means...
THANK YOU, once again, for all of you support, and I hope everyone is doing well on their journey!