Symptoms

[Spicey30]

Hi, i am i 30 years old and i was diagnosed with chiari type1 malformation last year in April. The first neuro surgeon that i saw recommended that i should have a decompression surgery to prevent my symptoms from progressing. I saw tthree other neuro surgeons (i was hoping for a different opinion) and after performing examining me and looking at my MRI they gave me the same advice (to have a decompression surgery).
Before having an mri, i had no that chiari malformation existed. Initially i went to see an orthopedician because i was convinced that my problems with balance when walking were because of knock knees or something, he referred me to a neurologist who in turn referred me to a neurosurgeon after taking an mri..
The symptoms that led me to seek professional help are problems with balance when walking- my gait is worse on uneven ground or when it is dark or when i a m tired
After my physical examination (by the neurologist and neurosurgeons) i was told that i have:
-an ataxic gait (sometimes my legs have a mind of their own and i kind of stagger)
-nystagmus
-the nerves in my feet over react/ are too sensitive or something like that
-a problem with my gag reflex.
I was supposed to have the surgery in December last year but i missed my appointment. I haven't made another appointment yet because i think my symptoms are not that serious but i have days when my body acts funny/reminds me that i have chiari malformation
I have some experiences that i do not know whether they are chiari related or not.
I do not usually have headaches but their are times when i wake up with a terrible headache (pain at the back of my head) or if i laugh too much i get a headache.
Sometimes after eating the food keeps on coming back up my throat even though i did not over eat and at times i have to throw up.
I experience a feeling of breathlessness-like i cant get enough air, this happens once in a while for a few days in a row.
Another experience that bothers me are my toes; the second toe (the one that is after the big toe) usualy hurts after walking in my shoes (i usually wear closed shoes because my toes are kind of clumped/curled), i thought this was happening because of tight fitting shoes but it happens even with shoes that are a bit loose..
My speech is ok but its a little slurred and i drool when i am asleep.  
My tonsils protruded by 17mm
I had all the above symptoms even before my knowledge of chiari, i want to find out if these symptoms (especially pain in the tip of the toes) have anything to do with chiari (or i am over reacting) and if i do not have the surgery will my symptoms get worse?

[selmaS]

  So they did not do a CINE MRI?....Not sure how they can see a blockage without it as it is a flow study....???

  Some experience is not the same as a Chiari specialist , they do research on Chiari and related conditions....u will want someone well experienced as it is possible for them to have a surprise once inside, and those that do these all the time will know better how to handle it....JMHO

  The Drs on the list should be able to offer insight to u and or ur Drs.

[Spicey30]

Hi, thanx for the responce. The first two neuro surgeons that i saw were not chiari specialists, i travelled to south africa, the last neuro surgeon i saw has experience in dealing with chiari's and he said that my mri showed some lockage but not a syrignomelia..I was advised to do the surgery mainly to prevent the progression/worsening  of my symptoms. The only test/examinations that i did where the physical neurological tests and an mri of the spine and brain, i didn't have the other tests that you mentioned. I will try to contact some from the list of chiari specialists.

[selmaS]

  Hi and welcome to the Chiari forum,

U said ur Drs all suggested the decompression, but did they say why they felt it would be a benefit to u to go forward with this surgery?
Did u have testing to determine if u have a CSF obstruction or ne other related conditions?

Syringomyelia,disk issues, sleep apnea, POTS, ICP, CCI, tethered cord, ehlers-danlos......they all can have an effect on how u feel and heal post op....

  Chiari symptoms can cycle, come and go which is why u feel some days ur symptoms are not serious and some days it is more frightening.

  All ur symptoms can be associated with Chiari or a related condition.

U will want to see a true Chiari specialist and get more testing to see just how ur Chiari is affecting ur overall health.

Many NS's will say surgery bcuz of the length of the tonsils....but it is not the length as much as it is the width and if they are blocking the flow of CSF.....

I am not sure if where u r from that u can pick and choose which Drs u can see and if u have a true Chiari specialist near u....many of us do have to travel to get to one and maybe u can get ur Drs there to consult with a known Chiari specialist here in the states.

U can use the list below to contact a Dr that may be willing to consult with ur Drs there.
http://www.medhelp.org/health_pages/list?cid=186