chiari without severe headeaches no csf restriction

[tugboatya]

  im a 27 year old male  my symptoms started about 3 years ago with diziness  it progresivly got worse last year i started getting severly nausiated  and could no longer work had a mri  back in 08 they said that i had no tumers  i only had this thing called a chiari malformation  but was harmless and could not cause these symptoms.  about 3 months ago one evening i got a severe pain in my lower back shooting down my legs wich after 2 days turned into sort of a full body numbness with a slight paralizing kind of feeling   felt like i couldnt controll my body as normal although i could hard to expain   i went to the hospital and they marked it off as stress    after a few more days it turned into a full body pain  neuropathic burning pain    went to another hospital and was dxd with fybromialgia but i didnt buy that      so i had my primary order me another mri   and it read   minimul tonsular ectopia    7 mm    so more recently i had a cine mri  and there was no spinal fluid restriction witch  may or may not be true  but it seems like even without flow restriction the chiari could be causing the diziness because of the overcrouding of the cerebellum  wich is supose to be a big player in equillibrium and motor function   the only thing that doesnt line up with chiari for me is that i dont get the debilitating headeaches like most people i have read about  i do have kind of a constant dull headeache but its not excrutiating   also have allot of pressure on my head  feels like sombody squashing it and tingling burning scalp    i have a lot of symptoms that line up with ms but i dont have any lesions    so is it possible that the chiari could be causing my symptoms even without csf restriction body pain diziness head pressure  feel like im drunk all the time  also i dont get the one sided problems like allot of people   thanks for your input

[Lymanlady]

Hi,
After sugery everything went away! Then the end of June I was making a partial move from Ohio to FL. & over did it and now I have weakness in my legs but I make myself run 6 days a week and slowly I am improving...Laying around doesn't make me feel better! My balance is nearly perfect!.. I am very careful now about any lifting!,,Also I read that pushing & pulling counts as lifting so I put those on my to avoid list! I just so want to feel normal again!
Sandy

[tugboatya]

thanks for your advice  yes i had the thoracic and cervical mri but not the lumbar spine and no syrinx was seen and my cine mri was reported as no restriction but i read some where that they are not shure the cine mri is quite as acurate for checking the flow as they thought     to Lymanlady did your diziness go completely away after surgery  i know what you mean about the sea sick feeling  sometimes i also explain my diziness as a feeling of being on a boat    i am actually considering Dr Di if i have to have surgery also  the minimumly invasive sounds way better   i have sent my records and mris to his office and the office of Dr Jho  who also does endoscopic   its interesting because i have read that Dr DI has a patent on the surgery but Dr Jho claims to have invented the surgery  and I talked to the secretary of Dr Jho and asked if he knew of other surgens that do the procedure since i live on the other side of the country and he said he was not aware of any  so there must be a little bit of bad blood between them because they obviously have to know of each other   also i heard that their was a total of 4 neuro seurgons in the country that do endoscopic decompresion surgory but i have only been able to find information on  Jho and Di    does any body know of who the other two might be?    i have seen a neurologist and all he wants to do is give me anti depresents and i have been to talk to a neuro surgeon and he said that probably only 10 percent of my symptoms are caused by the chiari and that he wouldnt even operate on any one under 15 mm or somthing like that and all he had to say was to tell me some of the horrer stories of some decompresion surgeries gone bad      i have really been on my own with this whole thing but i am lucky in one aspect that i have a awsome primary doc who although doesnt know much about chiari is willing to order all the tests i ask for so i havnt had to deal with stuborn docs like allot of people     i want to say thanks to every one because if it wasnt for people like you suporting one another i would not have come near as far as i have  and would just be sitting at home sick with absolutly no expanation why   at least this way i have something i can fight even if it might not be causing all the problems

[n40066]

I was like you, in a way, when i first started having symptoms.  had what you have now to start, then came a multitude of others.  the headaches were one of the last symptoms to emerge.  even a chiari specialist will tell you to hold off on the surgery until the pain is to the point that you loose quality of life.  sounds to me like you have already lost some of that.  the question for all of us is....do we do more damage by waiting than we do by having the surgery?  for me, most of my symptoms went away after i had the surgery.  but when i got rear ended, some of them came back.  ie: headaches, numbness/tingling in my back, scalp, arms and legs.  

the point is, you need to see a chiari specialist to determine if your chiari is responsible for your current symptoms or if there are other issues involved like a syrinx or t cord..  from there, you can decide what course of action is best for you!
good luck!
elizabeth

[lu7997]

Dr Di is my doc too. And my hope in the medical community after it was list from doc after doc turning me away and leaving me to suffer.  


Ok. I will try to finish the thougt I lost sorry.    


Every person is different and when u are talking the nervous system the syptoms are berried based on which parts are effected. Their for the same disease effects everyone differently.    

Find a speacialist. It really is the difference between sanity and submission.   From their you will not only have a better answer to questions, peace of mind, but also a doctor that can possibly help u feel better.  

Good luck

[Lymanlady]

Hi,
I am like you! No real head ache problems but I had the weakness you talked about. Like weakness but your bones were holding you up!..Pain in my legs. I didn't explain my sick feeling as being drunk but like being sea sick!..I didn't have CSF fluid blockage but If I bent over I became sick and thought I was going to lose my legs. My symptoms were always bilateral!  I had surgery 10/20/2009 by Dr.Di at the Cleveland Clinic. I am now jogging over 3 miles 6 days a week. I also bike. Did I say I am 69 yrs old!..I got my life back after suffering for 14 yrs! When I really started to slide 2 years before finding Dr. Di i had been to 2 neuro surgeons and 2 neurologist..they never did a neuro check on me and even asked me who Dx me as having CM! I almost gave up. I was starting to believe I WAS nuts!..Then I saw a show on Oprah that said if you believe something is wrong with you don't give up! Find a doctor that will listen to you!.. That is what you have to do. Find that CM specialist!

[lu7997]

Well I am no doc. But I am a nurse. So I have been known to phisologically link things. (which may or may not be fact so please don't quote me).  

I associate the headaches chiarians suffer from to csf flow blockage. And other symptoms from compression of the spinal chord. And some associated with the increased csf flow causing problems in other brain functions.  So that is the three ways I have associated symptoms to chiari


If u don't have blockage I can see how you don't have headaches. But if u have compression I could see how the other symptoms are there.    


Hope this helps. I lost the rest of my thought process and will finish later. Timer for dinner went off

[selmaS]

Hi and welcome to the chiari forum.

It is very possible u r having symptoms from ur chiari.....

Have u been to a chiari specialist?...Sometimes a NS  or even a NL if not a chiari specialist may overlook or mis dx what is going on.Do u know was there a change from ur original MRI?

Were u checked for a syrinx?...MRI of the cervical , thoracic and lumbar spine?

And r u sure there was no restriction at all of CSF in the CINE?

Ask for copies of all tests and reports...even ur old one as u will need it or comparison.

When u have a report u read the whole thing not just the impressions.

"selma"

[Givenstrength]

Sounds to me like you need to find a chiari specialist. Sorry for your pain it stinks