I am .from india ..,female ..43 running ...married with 16 year old
I have been dx with chiari 8 mm ...no syrinx ,since long.,
no family members of mine not even distant relatives have even heard of this chiari ...
dx symptoms were numbness at extremities., neck spasms with unusual feelings ., pins and need les all over the
body.,pressure behind nose., pulling sensation of neck watery eyes occasionally., ...strange crawiling on the scalp ....
many more which i dont remember now .No HAs ..
I was dx by a nsg from a reputed medical college hospital..through ..MRI cervical spine ..
That time He said 8 mm is significant ., when we asked what is the treatment he said ***PFD and c1
laminoctemy.**, he never mentioned duroplasty ( think duroplasty has gained prominence in recent
years due to failures )..
the MRI report said csf flow appeared normal (though it was not cine nri yet the well known radiologist mentioned csf flow
appears normal )...and no associated compression of foramen magnum ...
He was inconclusive on the surity of low lying tonsils causing the symptoms..
Reg surgery .He said that ** he can guarantee survival *means living after surgery *apart from that nothing
Needless to say we .had a thrunderbolt with him saying he cant guarantee
anything ....except life .h
.he asked me further questions on stress etc., I was having terrible mental
stress during that period due to family and work related .....
he advised me to cut down stress and for time being to carry on as usual except not to lift weight ...and to come
if the symptoms were unbearable .
I thought of surgery for a few hours ...but having a wrongly done surgery I did not want to live with morbidity and becoming a burden (though family wont conisdere me a burden)
I just forgot the whole thing and carried on because I felt risking nerves and living with a permanent injury was not
worth it ..further I was not having any real pain ...
two years later I went to the same nsg., In the mean time after googling the net I found
cerebellar ectopia/ACM is not that simple ...
..This time the dr did a MRI but Brain., and also not from the same scanning place but different place.,
The reading was this time 6 mm.
, and other than low lying tonsils at 6 mm everything was fine with the brain ..
He did not do Cervical spine MRI this time ..I also did not ask for one ...
He said no need for surgery ., now ..If it exceeds 1 cm???? we can think of it ..
By now I had come to know that more than herniation size ...symptoms and csf
flow matterd ...
Now this Nsg whom I thought was reputed all the while for 2 plus years was
saying **Let us see if it exceeds 1 cm.**, .. he surely seemed to have not much knowledge of chiari ...
Again I forgot the whole affair and carried on as usual .,with symptoms on and off ..
an year later instead of nsg I went to a reputed neurologist who ordered MRI of c-spine..
He after seeing it said I had chiari but I also had DDD., and dehydration of
c-spine.,This is new thing added which did not show in first MRI of c-spine
he said chiari is something many can have without knowing they had one
and reg DDD asked me to loose weight and recommended ..methylcobalmine .tablets .I am taking them...
Even now I do have hands/legs tremors weakness some times even head.
.Rarely i have pins needles/tingling..and some more symptoms which i dont remember now..
.I must be having some permanent damage definitely ...
But the thing is I dont know if chiari is the only cause.,and drs cant say it ..
The last nsg whom I saw who is supposed to be very renowned (not the first nsg this is some one else)
asked me to take cine MRI but said
* Based on CINE MRI ...The surgery if it were to happen might help some of your symptoms .,(he said
noncommittally the word *might* and not ***would***) that is it !!!!
So I am not comfortable with going for surgery....
..what if I undergo thinking it is chiari and after all the suffering they say might be something else .....
I have had ANA /thyroid both negative ...EDS is not tested and even if tested no one gives treatment here based on that ....
success stories for this sort of surgery do matter a lot., .but failure stories are also important because
Surgeons here actually dont like patients and their relatives asking them too many questions on surgeries or their follow ups ...based on their readings on internet.,
They just dismiss it saying * it is all unfiltered info on internet ..anyone can write anything there ..Just take what we
real drs say* *
I have read some honest feed backs on surgery (all from internet only nothing from personal interviews )..Some
have said they are given new life ..
some .where people said they have not improved much..or needed additional surgeries ..or even become worse ...
I personally think such horror stories play an equally important role...like success stories , in decision making
especially for people like us ..where there is non committal attitude of drs ...
Further there is no actual statistics here as to the technqiues used for surgery which is best etc., and the long term
outcome of such techniques ....
While surgeries on rare dieseases are bragged in news papers here ...No one really knows what happened to the
patients after wards say after 4 or 5 years or if they had additonal problems/surgeries or lived happily ever after ..
I posted here to say ther are so many around the world who read your questions and replies .landing through search
Thanks to you all they get to understand their problems better and handle it more calmly.,when the reputed drs dont guide them much ..
Thankfully I have not had much pain to deal with so carrying on with this till
date .Tomorrow is not guaranteed for any one ..But
I would like to have suggestions from chiarians... on how to improve general health
1.My sodium level it is just adequate at low normal and would like to it and also improve hydration levels of c spine
.... feel i am some what dehydrated ..
2.How to make more muscle mass., without straining much and .How to cut down fat cells
4 How to improve digestion increase protein absorption without affecting
kidneys etc.,etc., etc..
I am at times scared if my son would have it., Because when I gave birth i
was not aware ...
but I know I cant think of that now and it is useless to feel guilty now .
.I have not had additonal children that is the maximum thing I could do ..,, .
..I am unable to have surgery especially when drs are noncommittal
, I feel I would live and die like this rather than me having surgery without knowing the real cause of symptoms and
I am sure without the real cause getting addressed things cant be fixed properly
Futher I dont have pain to deal
..Also dx was done years back
so I am really sort of sure that I must be having permanent nerve damage ..
dont know if surgery would make it worse
., Added to that there is no proper data on the surgery here .. information on one or two surgeries woth mimimum
follow ups wont do ..
I feel we need sizeable data on such major surgeries ..,so surgery for me sort of ruled ...
Please do share your views on improving general health
I have had laproscopic hysterctomy 6 months because of heavy flow and painful periods due to adeno myosis
I tried PMing selma ..who seems to be replying to many sufferers but could not since it says u cant send PM ..
..so wrote a long msg here ...
Thank U all... sorrry if this post took a lot of your time ..God bless all
Sorry but I was having issues with my internet, and it is now fixed.....
With Chiari the issue is more the way ur health is affected, not the length...so if u do not have a CSF obstruction it is very possible that u do not need surgery at this time, if u have a change in symptoms then u should be reevaluated.
This surgery does have risks and there is no way to know how u will benefit....most Drs do not suggest surgery unless the benefits out weight the risks.That said u still do not know how ur body will respond to the surgery, many develop related conditions post op...ICP, POTS, CSF leaks....so it is best to rule out ALL related conditions b4 considering surgery.
Ehlers-Danlos is a related conditions every one with Chiari should be tested for....as well as tethered cord and syringomyelia...many Drs only look to the cervical spine, but these can form in all areas, so u need a thoracic and lumbar spine MRI as well as the cervical.
I have my PM's set to friends only, and I will add u so u can PM me....
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