QUESTION OF THE MONTH ~~~

[selmaS]

  Hi ALL...wondering....

What do u feel is the biggest CHANGE to u since ur DX?

[selmaS]

  Thanks Cheryl....I am at a loss right now for questions and almost posted  one asking for ideas...so this is great : )

[MH Community Mgr]

Thanks for sharing your comments with us. They're helpful for our community members.   Everyone is welcome to continue answering this thread, as well as look for new questions each month!

Best,

Cheryl
MedHelp

[selmaS]

  The word u r searching for is cauterized....and yes u r still a Chiarian as this  is not a cure and Chiari is the malformation of the skull which leads to the herniation.....

Chiari is life altering post op some are fine for many yrs while others have more issues .....this is y we strongly suggest ruling out AL related conditions as they can affect how u feel and heal post op.

[girlinxile]

So if you get your tonsils burned or whatever they do (the medical word, ironically, is escaping me as things do).. are you still considered a Chiarian? Or is this a forever thing?

[selmaS]

  Hey stranger....thanks for the update....been wondering about u.

I had issue still at 1 yr post op....it can be what u r doing...or over doing.....and know that I did see more positive benefits at 2 and 3  and then at 4 yrs( that will be this Tues).....

So hang in there....and continue to listen to ur body.

I hope u continue to post updates and I pray u get relief from some of the returning symptoms,

[Rahe28]

My biggest change is being able to be a mom that my kids deserve, at least some quality of life...as I approach my 1 year zipperversary, my head ease jaw pain has returned, I am really feeling like I took some steps backwards, but am still very grateful for how well I do feel. I can walk again without passing out, I don't have a24-7 ha but I tell ya, its as if my anniversary is trying to remind me that surgery or not, I still have Chiari and I always will. That acceptance is one I thought I had accepted until very recently. Out of hope that I would feel better if I didn't read how awful others were doing, I tried to take healing from surgery and make it a brand new life..but the simple fact of the matter is, I still have bad days, and more now than not. It is really hard to take acceptance and make it work. I Kerri pretending that i'm all better, but that is just a lie I tell myself to get through and to protect those closest to me. I just can't dresser then hurt and be scared for me like they were st this time last year. I know I have been a terrible forum friend, and for that I am truly sorry because you guys for me through some of the worst times, and I turned my back. I finally got a referral for physical therapy after nearly a year! Finally had my 1st post op MRI, and there is Huge difference, but I stroll see three width if the blockage which just scares the crud out of me. Sorry for the ramble, I just didn't know who else to turn to. love you all and pray that you are all doing week. it saddens me to see so many newly dx'd chiarians, but glad that people are actually being diagnosed. Love to all

[drewlevas]

What changed in my life is that after years and years to be told that all my pains and symptomes where in my head as in crazy. I finaly learned that I am not crazy and that it is all literaly in my physical head.

At least now I have a reason to feel like I do. And I can talk back to people who say that I imagine that I feel stange, and not well.

[selmaS]

  I have to say this, I am so happy I had surgery it was a great success...I do have other issues I am still dealing with....this is y I feel it is important to tell people the truth, no sugar coating...and as Viv said those that do well leave and go on with their lives...those that stick around do do bcuz they have more issues or r just starting out like u....

Finding the right Dr is key to doing better post op....I did great...and was very happy with my Drs.....

Many of the related conditions can cause symptoms similar to Chiari so, if u r not aware of them as many do not they feel the surgery was a failure...when in fact that aspect went well....some have set backs trying to get back to a normal life too soon....we have to learn to be patient, listen to our bodies and know ALL that is going on to feel better....one surgery is not like flipping a all better switch....JMHO

No one means to scare u, but this surgery does have risks, and knowing all u can can minimize those.

[Viva001]

The ones who recover completely--or nearly so--leave, and go back to their lives.  Who can blame them?  We're happy for them, but it would be great to hear how they are doing.

[girlinxile]

I would say the same.. realizing all these things I just used to deal with were actual symptoms of something else.. knowing I wasn't crazy after all.. lol

Or maybe I am :)

And you guys scare the crap out of me with your post op stuff. I hardly see anyone who feels tons better :(

[keepswimming]

Having to quit working in Dec 2012 has been the biggest change. I've been working since age 14. So now I am waiting for a medical discharge from my beloved army....yes, Still for those who remember me as this name or warriormomma
Good things: more compassion, no longer fiercely independent and will rely on others
Most importantly, I finally found peace through Jesus Christ. Instead of walking ahead of him I allow him to carry me at times. And that is OK :)

[selmaS]

  So true...we can sit and watch life go by or hang on...I choose to hang on too....no matter what I have thrown at me....

Yes, some days are tougher then others....but we t strong enuff to get thru them....I feel those with Chiari are made stronger by dealing with it for so long.

I feel Chiari is what made me who I am.....I am this way for a reason....

  I know I may not have tried to do many of the things I am now trying...hobby wise....I have surprised myself at painting, and it excites me to try more....not sure if I would have found that hobby with out Chiari.

Got to go, my painting show is on right now...lol...TTYL

[frankie_rush]

I like what you said Selma.  Things happen for a reason and only he knows why.  I know I couldn't have when my kids was younger and I was going through things with my mother.  But at the same time, you can do one of two things with Chiari.  1. Let it run your life or 2.  You can kick it in the *** and show it you are the boss.  You can do more than what you think, your mind is the most powerful thing.  You can use it and don't give up or sit on the curb and watch life go by.  Myself, I have decided to grag life by the knat hairs and show it I am here to show you I am boss.  I am not saying that sometimes I don't feel down with this cause I can't do something with the grandbaby or the wife.  But look at all the good things in life you have to embrass.

[selmaS]

  The thing is, with Chiari it may have gotten worse latter in life, u may be at a point to deal with it now, better then latter...who knows...but, I feel we get what we can deal with at a time that is right for us....not that it feels that way....but I know I could not have dealt with this when my DD was small...so the timing for me was right....and I did try to find out long b4...so, I know things happen for a reason....we r just not privileged to know the y's to it all.

Find a hobby to get ur mind onto something else...many of us sew, crochet,quilt, or paint then post ur projects so we all can see....it is fun, and may give u a new career path : )

[mickma2]

I  feel the exact same as munchies, I wish I didn't know.  I'm so sad and tired of being off work,  of feeling sick. I really wish I wouldn't have hit my head and started all of this. I was dealing with the ha's every day.  the eye pressure was annoying.  but I'm nauseous, and shaky, I'm worse.  and I know people have it much worse,  but I just don't wanna do this anymore!

[selmaS]

  That was a biggy for me too...realizing all the issues and sensations I thought were "normal" were actually symptoms....

[derek1983]

realizing things are symptoms that i had no clue were before thought i was normal lol nope

[jwood447]

I your the same smiling lisa that has Celiac Disease?  I saw it on the Celiac forum .

[jwood447]

What were the other two reasons?

[selmaS]

  I am not a medical professional in ne capacity...

And I never got disability approved in fact ky LTD was denied and to fight that is now a federal case bcuz of a new law ERISA...and there r not too many lawyers versed on this and it would cost more to fight then I would win, so not ne that would take it  either,....

I was well pleased with my NS at TCI....It can take 6 to 8 weeks to hear back, and then a few more weeks, as they review all cases at a weekly meeting and take the worse cases first.

I have had a cane since the yr 2000 and had no idea what the issue with balance was...as we felt it was from a botched ankle surgery....I still use my cane for uneven surfaces...grass, gravel roads...etc...but I am doing better now then b4 surgery.

B4 u had surgery for Chiari, were u tested for ALL related conditions?

[SmilingLisa]

Hi,
Surgeons only operate for 3 reasons, diminished flow is one, I had little if any  flow on my CINE.  Size of herniation doesn't matter. I had a very large one 20mm and was diagnosed after an mva w/ multiple symptoms.  Can u work light duty?  Get another opinion w/ a NS that does a lot of chiari operations.  Selma is wonderful and can refer u to the list.

[SmilingLisa]

Hi Selma,
I had headaches 24/7, pain and tingling in my legs 24/7, shoulder and neck pain, trouble swallowing, heavy arms, throat pain, severe vertigo and dizziness, was driving left of center and stopping beyond red lights and stop signs-depth perception was off ,had concussion from mva,  major nausea, nystagmus, falling stars, incontinence, dropping things, ataxia, forgetfulness, numbness of hands and feet, cp, severe weakness and lethargy, very poor concentration, blurred and double vision etc pre op.
Are you a nurse?  How did you get your disability approved? and how long did it take?  Where u pleased w/TCI?  How long does it take to get an appt?
Did u have any trouble walking pre op?  or now? still having n/t in legs walking. I am post op over a yr.

[Lifesvr7]

I'm more frustrated with doctors after chiari Dx, they still don't want to listen. I have since done research and basically diagnosed myself (later confirmed when I forced them to do testing) with Hashi's and LPR. How many times must I be right before they listen. Still can't get anyone to listen or attempt to diagnose connective tissue disorder, whether it be EDS or something else. The pain tells me something is wrong. I also need a new MRI of my thoracic and lumbar due increasing excruciating pain, but no one seems to think anything is wrong there either. Went to see a so called chiari specialist last week and it was a joke. He said the only symptom I have that is due to chiari is my headaches yet still recommends surgery due to blocked CSF. HE has no idea where other symptoms are coming from and didn't care. He also said I was unlikely to develope syrinx even though CSF was "significantly" blocked. Glad he has a crystal ball. Needless to say, I'm back to doctor shopping. Getting so irritated at having to be the patient AND the doctor. Not sure how much more I can handle.

[jwood447]

I getting mixed up on how to post, I hope you get them.
My main symptoms are: numb face, slurring words and wrong words with the feeling of drooling .  Parastesia in arms and legs, pressure in back of neck ,hot pressure in the head apon bending head front or back. Poor consintration, titnitis, cant smell bleach, various shooting of pain in different extrimities poor cognition. Bad vertical doulble vision corrected with prisims and doulbe when tired.Heavy arms, Pain inthe Jaw, pounding in back of neck, numbness when sleeping on my rt side of arm and leg dizzyness when turning over. All symptoms come and go : the worst is numb face after riding in a car thats bumpy.  Hear aches are geting worst but tolerable when I lay dowm. Some nausea.  
Other history:
Hypo thyroid, Gout, Celiac disease,New Borderline diabetes(trying to fix with diet ) before it is too late.  
I was very active biking kayacking, white water rafting, roller coasters last year with a few falls.  I broke MY Self.