does everyone get headaches??

[neava]

hi all, i was wondering, does everyone have headaches?
i get mild headaches, but nearly daily.
from what i have read most people have really bad ones,
ARE MINE GOING TO GET WORSE?

i have alot of other problems and they have gotten worse over the last year, i see specialst again in november, so hope they mite look at operating this time, i got told last yr that it was to dangerous, and would prob result in death,
so they were looking at ms INSTEAD, i feel i am not teated probly, and dont get support i need,

i have spinal surgery last yr and i am wondering weather, since having the cyst removed that was compressing my cord, weather it has weakened the base of my skull, my symtoms are alot worse, and with new ones,
i have three verbe removed and put back.

does anyone have ideas for this aswell?

[neava]

thankyou,
that  makes perfect sence, i will speak with him next month about it all, and hopefully i will get somewhere

[rod44]

Hi neava,
Yes Chiari is an illness that many neurologists (NL) and Neurosurgeons (NS) have different opinions on, most have little understanding of the illness because they simply don’t encounter it on a regular bases because it is relatively rare. Ask the NL you are due to see how much experience he had dealing with symptomatic Chiari type 1. How many Chiari patents he has on his books. You will then know if this doctor is the one who should be treating you or if you need a second opinion. Commonsense dictates that if you are not getting the quality of care you require then you fight to get it and this may mean changing consultant. This illness can progress so it needs to be monitored carefully at the very least and other related illness need to be ruled out.


Ray  

[neava]

my specialist was a nuelogist sorry spellign bad (hard to remember how to spell words at times) i went numb on left side april last yr and i called an ambo, the told me it was a panic attack, go and see your GP, i that afternoon i went to him, and he did some basic tests, (now i normally go numb rightside but this time i went on left), the GP decided that it looked like it could of been a stroke, and sent me straight to hospital, where i sat in waiting room for 2.5hrs then just saw an ED doctor who said miarigranes, i told her it wasnt and that im very unhappy that they werent taking me seriously, the next day the supervisor rung and sent me to a nuero specialist, so 2 months later i was seeing him, he said it looked like strokes, and sent me for an MRI of the brain, he told me that was normal, i then requested an MRI of the Spine, which he didnt want to do, but it started to sound like MS to me and wanted my spine checked for lesions, so i had one done, and he rung two days later, and said that i have an 4.1cm archnoid cyst compressing my spinal cord, in the thoaic, at T7 T8 T9, so he send me to see surgeon a wk later, they told me that, that could be effecting my lowerbody but doesnt explain my facial and arm stuff, the day before the op, the surgeons pulled up 2 MRIs, an said that they were trying to decide weather to op on brain or spine, so you could amagine my shock, well they did the spine, i didnt take much of that info in as i was to worried about spine op. after i had recovered they did another MRI of the brain, and to check fluid flow, i went and saw the surgeon, they said they wouldnt op as to danerous and that it looks as though i have MS, and to go back to specialist,  went back to him, and he said there was nothing toworry about  with chiari 1 malformation and that he had seen worse drops then mine, and then said  it looks as though i have early stages of MS and that he wasnt going to label me, and just moniter how i go over the next few years, and to enjoy life and hopefully he wont see me for awhile,

thats pretty much it, up until now, i have been getting worse since march this yr, so went back to doc and they have sent me back to specialist, so i see him again in November the 8th, so im going to have a good talk about it all and i do think 8mm drop is causing alot of my problems,

thanks for listening

[rod44]

Hi
Like selma I am confused about your pervious surgical history however any surgery in the spinal area can leave scar tissue that can cause a blockage or obstruction of CSF flow…
symptoms cycle at times they may seem unbearable and at other times not such a problem….
Ray  

[selmaS]

Hi.....most chiarians do get HA's all types....most tend to have a constant HA that since they have it all the time appears mild....and at times can get worse.

U said u saw a specialist...may I ask what kind of specialist?.....some consider a NS a specialist, but u need one that specializes in chiari.

I am not sure what kindof cyst u had removed.....so I am confused by ur history.

Research the specialist u r seeing to be sure it is ndeed a true chiari specialist.

"selma"

[neava]

i hope thats something i dont get worse, i hate headaches, acually i have everything with my body, i get so frastrased

[Benny83]

My headaches were mild at first but now they are so severe it is horrible and there is nothing that helps me right now, well nothing my Dr has given me yet.