please translate if any one can

[Kelly_Gurl]

i was reading my mri report and i wonder if anyone can explain what the following means my NS treated me like a number and left me shocked and speechless i never got to ask Qslike ....

the sagittal MRI image confirms descent of slightly peg like tonsils up to 6.5mm berlow a line drawn through the basal portions of the opisthion and basion.  The foramen magnum is crowded with obliteration of the CSF in the axil view.  the cistema magna is obliterated.  No pathological signal on the T2 weighted sequences in the brain stem or upper cervical cord.  What they hey... please explain...........
They also say slight effacement of the sulci and cisterns demonstrated with confirmation of a partially empty sella
I  am sorry this is greek.... My NS has me booked in on the 17th august and thats so soon.... i have over 35 symtoms on the chiari unite page..... i am really scared they say the operation is going to be a Posterior fossa decompression and c1 laminectomy... oh my word please can some one explain all this and am i heading to a whole new pain threshold... the thing that scares me the most is NOT KNOWING please can some one prepare me for what to come.  I am 31 years old and i have two beautiful young children what can they expect from there Mommy?  the healing process and is there special things i can do afterwards like acupuncture , massages.....things like that what should i not do afterwards to try not get this reoccur?

[selmaS]

  Hi this is an older thread and this member has not posted in a while, u may want to send a PM so a e-mail is generated and she knows someone is trying to make contact.

If u get her to respond, find out what Dr she went to to get a list started : )

[Nicky83]

HI, My name is Nicolene Benade and I am from South Africa also, so that makes us 3 with CM.  Haha.  Kelly shame I feel your pain.  I was diagnosed with this CM(crap) november last year, 2 days later had the decompression.  No worries. No probs.  Started working again on January 2013.  Still no probs.  There is some doctors in SA with knowledge of CM.  Just got to find them hahaha.  Be good and strongs.!!

[selmaS]

Hi Kelly,

I am happy u made contact with the other member......does she live near u??

Well if ur dr has no bedside manor be glad u see more of the nurses than him.....and if he is all he claims that is what matters.

There r chiari drs that will review ur films; some charge a fee......

Use the search this community feature to the right of the screen and type in list of chiari specialists.....and do another one and input how many zipperheads.....the last thread gives accounts of the members experiences after surgery.

I have mine posted in my profile page in a journal....u r welcome to read it.

"selma"

[Kelly_Gurl]

Hi there everybody,  i have been blessed by finding this forum, because as of last week i had no clue as of this week i found such hope.  I am feelling positive and know i have ben an emotional mess the last two weeks.  Thank you.  I have so much to organise before the op..... i have rescheduled it for a week later now, so another week of antisapation... i feel terrible but amazing that there is so much to do .... i know i cant get out of the operation but i needed just one more week to breath.....
I would like to know what to expect... i would rather know then not... the cut, the pain, the recovery and just general overall..... DONT sugar coat it how brave do i need to be... i swear i am a proper girl when it comes to pain... but yet again i have lived in pain for the last 8 months wondering if i shall wake in the morning... i get very tearful on anastetic... and just generally the OR is very unnerving to me... i am petrified...

My neck is killing me today.... after the operation did everyone elses  symptoms let up and does this (tonsil) continue to grow after the op? Does it stop in its trax after the op stop where we left it at size 6.5? Did any one else get cravings i am so oooooo craving salf and i am thirsy all the time?  did any one elses face swell my eyes are swollen and the Drs say it has nothing to do with this Chiari....Oh my hat i sound like a i dont know what ..... i am just so hungry for information.

Yes the South African lady did contact me, shame she is sweet but i cant believe there is only two of us in South Africa.... I am shocked really???? Even  Drs NOTHING... The NS i have i have been told that he is the best in the counrty just he has no personality and bed side manner.  Technically he is the best .... i never got to ask him how many surgeries he had done and the success rate..... i dont know who to go to for a second opinion...  i have used my personality in stressful situations and i had nothing clever or funny to say at that point all i asked was thye most ridiculous Qs " what about my hair"  i could have asked about techinical Qs and important Qs and I had to ask that... i am such a fool.... But today my mom and i went to buy a wig and it was fun the first time i have smiled and by the way i got the Jolie type one even though i am a huge Jennifer Aniston Fan Ha ha dont tell her.... My mom also got one for herself in sympathy for me.... even if i dont use it i like to know its there people can be so cruel.... about my zipperhead... i think it would be a safety net for me but just think if i need to go to the shop... i can look like Angelina Jolie in two seconds flat woop woop... any hoo i have talked enough today i am sure you have important things to do then read my ranting.....
To all my fellow friends thank you for the support i wish you well and thank you for being here for me

[flcrakar]

I agree totally! Find a NS who you are comfortable with!!! One the specializes in Chiari!!! It will make all the difference in the world.

As for your MRI..I can help with some of it....effacement is "thining" like when you were pregnant and they checked you for dilation and effacement, "thining of the membrane". Look up the words in a medical dictionary online or at the library....you can piece together the definition of your MRI. Mosby has an awsome med dictionary!

Send your medical records to a Chiari specialist!!!! Get a second opinion from someone who has a clue before your surgery! This will help to ease you worries! What state do you live in? There is a post on here...."list of chiari specialists" find it, then find yourself some piece of mind from someone with experience treating this condition.

I am currently waiting...I am going from FL to NY just to be seen at TCI (the chiari institute) 8-14 and 8-17. I was diagnosed in April of this year and have struggled to find anywhere here I am comfortable with going to initially. When I return from NY I will follow up for a second opinion at Shands in Gainsville.

Please don't let yourself settle for "the doctor is always right" mentality. You and only you know how you feel and the impact chiari and surgery will have for you. Be informed, be your own patient advocate. Don't be afraid to challenge and ask for explinations you understand from your doctor(s). If they are unwilling or cop and attitutde, go somewhere else....you life, your health...not thiers!

Sorry it is long and seems to rant.....I am just tired of seeing myself and other people mistreated for a condition. If I can help you information wise I will. Also find the insurance post on how to handle them. that's all for now.

[selmaS]

Hi Kelly- for the most part ur MRI is similar to most here.....all typical findings of chiari.

AS far as ur c1 laminectomy it is ur cervical spine and it is the first  bone.....and the dr will chisel away some of it to make the room needed for CSF flow, which seems to be a big issue for u.

I agree with mleedix as to getting a different dr and the need for u to be relaxed and comfortable with ur dr....however, I also know it might be impossible to find one near u.....I also do not know if u r able to travel to another continent to get help.

Was the other member able to give u ne info?...did she reply?

I agree, u need to contact this dr and see if u can get more info.....especially - how many of these surgeries he has done and the outcome of them.

"selma"

[mleedix]

If you are a number 'before' the surgery- sorry but you will be after as well. 'We' can feel desperate for help and may even feel that we have to accept whatever help we can get. 'BUT' it's a proven fact that when a patient goes into surgery relaxed they not only heal faster but the outcome is generally better overall. If your current NS -in your opionion- has treated you like a number go back and make him explain this to you. If he can't or won't then ... sorry, you sound like a wonderful person with a wonderful family don't allow a 'high' on himself NS to make a buck off of you. Find another who really cares and understands you as a person as well as the problem then you will get the help you really need.

Chiari is still unnerving but we can deal with it a lot better with adequate help. I look at it this way, men are imperfect thus we can't expect perfection. However, God is perfect and even he offers us an explination for the plight we are in and frankly he is not obligated to do so. Thus if some man/woman is going to make a buck off of 'helping' me, thereby making me their customer, then the least they can do is explain to me what is going on. If they can't/won't then someone else will make that buck not them. Sometimes being a good parent means taking care of mommy... :-) My advise would be to call the NS and either get an answer to your questions or get a new NS.