Please please help!!!!

[lu7997]

I need help from everyone.   I néed to hear your stories from how this effects you to everyday functions that have becom difficult and how it effects family.   My husband just doesn't see. I have tried so hard to get him to understand. And it just isn't happening.  He just gets frusterated.   To the point I can't even correct the kids without him correcting me.  He even made the comment well if u can't think than maybe you shouldn't be correcting them at all.  


I need help I need advice. Anything to help make it through this.  

Thank you so much.  

[n40066]

i also used dr. heffez in nov of last year.  for me, it was a great experience all around.  and he will review your films at no cost.  even if you don't use him to do your surgery, it won't hurt to have a specialist have a look at your film!
keep us posted!
elizabeth

ps...good luck tomorrow, penny!

[trippmusic]

I highly recommend sending your MRI to Dr. Heffez of Wisconsin Chiari Center. He's amazing and very clearly states that it's not about the size of the hurniation. He's doing my surgery tomorrow morning and I have only heard good things about him.

Penny

[selmaS]

Hi...I am stunned that dr O's staff said u had to have a herniation of 5mm b4 they would see u, he was at a conference I attended back in 2008 and the topic was Chiari 0.....and we were told, chiari is the malformation of the skull, size of herniation does not matter unless the size and shape are creating a CSF blockage...along with a blockage , symptoms they also look for overcrowding.....

Have u had a CINE MRI done, do u know if u have a CSF blockage...and what symptoms besides the HA's and blurry vision r u experiencing?

If u have a good NL or PCP that can help u get further testing to show u have a Blockage....u may find it a better way to open a door at a chiari dr office.

"selma"

[chiaricourt]

After reading all of the posts here, I am made aware that I am a very new chiari patient. Even though this is just the beginning, I CAN'T handle it! My chiari is only 3mm so nobody that I have found will operate on me anymore. My family is still on my side, but I am afraid to update friends because they don't understand why something so debilitating can't be operated on. I have been having chiarie symptoms for only a year and a half, but I have already lost so much. I am a registered nurse and cannot work. I have two little boys that I am not capable of taking care of 24 hours a day. I am not talking to many friends. I can only be on the computer or reading a book for about 15 minutes before I get an insane headache and my vision goes blurry.
How do you find a surgeon that will operate on you if your chiari is mild??? The first post on this blog quotes a poem from Dr. Oro who is in the same town as me. He won't even see me because I am not at 5 mm yet. I have almost all of the symptoms, but nobody will see me. When I asked the receptionist at Dr. Oro's what I am supposed to do, she said I need to get yearly MRI's until I am at 5 mm. Then Dr. Oro will see me. Well, I think his poem is complete bogus.
Sorry, just needed to vent. Does anyone know how I can get to a good surgeon at only 3mm?

Thanks,
Chiari *****

[selmaS]

"The biggest thing any of us can do is to just be patient, bide your time, don't ever give up the fight and make the most of the good days when they arise, but always try to keep your limitations in mind or suffer for it later."

I could not have said that better myself... : )

All so very true.....I hope u continue to post here on the forum....share ur experiences and concerns.

"selma"

[MikeO31]

Its a good question, the NS who did the surgery has done quite a few decompressions and boasts that he's never had to re-operate on a patient.  As far as the NL's around here, none of them that I'm aware of are chiari specialists, and one of them had even said to me before my surgery "If you have a Chiari Maliformation I'll eat my shirt" after I had told him I had already gotten a dx for CM years prior to the restart of symptoms.  I'm going to my family doc tommrow to request that he send me to a chiari specialist.

The biggest thing any of us can do is to just be patient, bide your time, don't ever give up the fight and make the most of the good days when they arise, but always try to keep your limitations in mind or suffer for it later.

[selmaS]

Thanks for sharing....I do believe it is very diff for those that do not have this to understand....drs don't so it is even harder on friends and family members.

I also feel we need follow up care for situations like urs...the NS's that r chiari specialists only see us when we need surgery...but NL's is who we need to get a dx and follow up care...and where r they?

I was wondering if ur issues could be from ur patch?

"selma"

[MikeO31]

I was diagnosed with a type 2 chiari when I was about 16, my symptoms came up suddenly and lasted for about a year or so, at first the doctors tried to say I was crazy and wanted to lock me up in an asylum, I was later given a full written apology from them when the CM was found on the MRI.  I was told that because of the changes in my body due to adolecence are what possibly triggered me to have the symptoms, I was told I would need surgery and they gave me a very low survival rate at the time, I chose to wait since everything seemed to be fine.  

It did not become an issue again until I was about 28, I was working on the dock of a chemical company, everyone tried to say it was all in my head because I didn't show any signs of compression yet I was experiencing full blown symptoms from the chiari.  After getting the run around for about a year and 1/2 (its not the CM it must be your lungs, its not your lungs, it must be your heart, its not your heart or your lungs, but its not nerological either)  I got to speak to an NS who said that I had to have the surgery right away, that it could not wait any longer, and shouldn't have been left as long as it had already been.

The surgery was performed, a gortex patch was put in, and everything was great for about a year or so, I was able to go back to work, and aside from some neck pain I was doing pretty well.  All of the symptoms have returned now, and most days I can barely function or do everyday life activities.

Having a CM is certainly no picnic, and its a shame, but no one can really understand what you're going through until they have had to go through something similar themselves.  The best thing you could possibly do is have your husband think about the sickest he's ever been in his life and how he felt at that point in time to even have the foggiest idea of what those of us who have a CM go through on a daily basis.

I hope my story has been of help to you or any others who happen to read it

[angelways]

I TOTALLY UNDERSTAND WHERE YOU'RE COMING FROM,I WORKED FOR 20 YEARS,THEN AFTER THE 8TH TIA I HAD ,I JUST COULDNT DO IT ANYMORE,I DONT HAVE A HUSBAND BUT MY FRIENDS AND EX CO WORKERS ACTED LIKE, YEAH,YOUR SICK,BUT I GOT MY DISABLED SOCIAL SECURITY AND SSI IN 5 MONTHS WITHOUT A LAWYER,THIS SHOULD HAVE TOLD THEM SOMETHING! BUT EVEN AFTER ALMOST 2 YEARS THEY STILL ACT LIKE I'M FULL OF BULL,BUT MY REAL FRIENDS CAN TELL JUST BY LOOKIN AT ME WHEN I FEEL BAD,YOU NEED TO LET YOUR HUSBAND READ AND WATCH VIDEOS ABOUT CHIARI,MAYBE THIS WILL HELP HIM UNDERSTAND MORE.HOPEFULLY THINGS WILL GET BETTER FOR YOU SOON,ALSO ON YOUR GOOD DAYS REST A LITTLE MORE EVERY COUPLE HOURS,IT HELPS THE BAD DAYS FROM BEING UNBEARABLE.GOD BLESS.

[mishell24]

sorry wrote it on the wrong page lol x

[mishell24]

r thank you all for your reply's really helps...i will keep you all updated after i have surgery xxxxxxxxxxxxxxx

[chiarigirl11]

Its true, the pain that we have is unbearable sometimes and people cant see it...so they tend to think, oh, it must not be that bad..i think its the hardest thing to try and explain to people what were going through although theyll never fully understand, my chiari has made me have to quit things that i love to do...i always have a headache...i get dizzy/unbalanced..and i cant hear anything out of my right ear. i absolutely hate when people think that were just faking it..or being "over dramatic". i have a bunch of other symptoms too...Too many to name...be strong..i think us chiarians are the strongest people...hope you do well.

~~Elle~~

[lu7997]

Thank u Selma. : ).  

[selmaS]

I pray ur DH will be open to learning a little more on chiari....it is not something u can set limits to as to how long until u will feel better or if u will....

U also can not always say or do the right things or things that make sense, but to limit ur involvement with ur kids bcuz of it...no way....this is who u r...and ur kids will learn that it has an affect on u and ur whole family...

I did get thru raising my DD not having a dx...I did not always make the right decisions , but no one questioned  me bcuz no one knew my dx.....no one is exempt from making  a wrong decision or saying the wrong thing or being able to clearly make heads or tails of any given situation as a result of daily stress.

I pray ur DH understands chiari is not a reason to change ur  involvement in correcting ur kids....but a way for him to learn to understand u.

"selma"

[lu7997]

Thank u all for sharing. And I am truly sorry we have this in common

[jacmurphy]

Hi.
My son's Chiari has been so hard on the whole family. But I realize now matter how hard it is on us.. it's a million times harder for him.
Along with the headaches, back pain, shoulder pain, chest pain, sensitivity to light, pins and needles and 100 hundred under symptoms he also gets very confused, can't focus, He hears things much louder and voices can have a real impact on him, Mood swings that frighten him,  He'll get into a bad mood and does't know why.. just has to vent and vent, Acting as if drunk, Balance issues and just feeling he can't cope. Fatigue and sleep.
9 months ago I had a happy, active outgoing son. Now he's in pain all the time and having strange sensations. 9 months ago he was an honors student now we are looking for a special needs teacher for him.  He has a NL who says he isn't having symptoms. If a NL doesn't believe him who will?
I know him and I believe him! I'll always be by his side.

[rod44]

No one can see the pain we have, people look and think you dont look sick.
I had to stop working in 2006, I was told I was a health & safety liability because of my balance issues. This was sole destroying. Then I had my driving licence taken away after having some drop attacks that left me hospitalized.
I get pain in my shoulders, neck and up into my head that knocks me out, I cannot function.
Sometimes I can sleep for hours and then other times I cant sleep for days.
I have muscle weakness witch prevents me from walking even short distances, I have Bladder problems. Frustration at not being taken seriously by people dose get me down and adds to the depression off not being able to live a normal life but I cant change how these people think, I just say before you judge me walk a mile in my shoes.

Be strong :)

Ray

[joyus12b]

I hope my story can help.  I am an at home mom with two kids.  Until I got sick a couple of months ago, I was the person who did pretty much everything for our family from cooking, and cleaning, to yard work.  I understand as an at home mom I should do a lot for my family.

Anyway, Chiari has pretty much pulled the rug out from underneath my family and I.  We are all trying to adjust to my being sick.  My kids are finally learning that Mommy can't do everything and are relying more on their dad.  My husband is now getting used to doing household chores and taking care of the kids more because he knows I cannot do them.  I am learning to let go of my to do list and just appreciating the help that I can get and not expecting things to get done the way I did them.  

I have my good days and my bad days. On my good days I put in a good attempt taking care of my family and the house.  But, I have learned that when I slow down and finally sit down or take a break, my symptoms increase dramatically.  My bad days pretty much consist of me laying in bed all day.  If I try to get up and do something, I end up in bed within minutes.  

I have never been one to lay in bed even when I was sick.  But, I have learned to listen to my body.  Laying in bed on my bad days gives me the opportunity to save my energy so I am able to have more good days than bad.  

Frankly I am tired of being sick, and having to go lay down, but I don't see this going away any time soon, so I am going with the flow of things. Learning what my limitations are, and having a my husband who understand that this is something that I did not ask for has made our adjustment a bit easier.  

But it took time for this to happern.  My husband came to this understanding last month when he realized that my symptoms were getting progressively worse.  The way he figures is I have been taking care of everyone for almost nine years and now it is his turn to return the favor.  This was a choice he had to make, no amount of my saying I need help or he needed to do certain things was going to get him to do anything.  

I am sure I rambled, like I always do, but I hope my situation helps give him a bit more understanding of how much this affects an entire family.

jocelyn

[shanmomof3]

I can totally sympathize with you dear! before my surgery it was horrible around my house but things are much better now and he understands so much better and if I tell him I need to lay down he doesnt fuss anymore. Have you tried sharing the "Spoon Theory" with him?  My husband tells people that before surgery he was basically living with an Alzheimer's patient that was only 35yrs old!!!! My memory is much better now but I still get extremely tired really quick so I have to pace myself and a lot of times I have to say "no"

[lu7997]

Please give me something to show him.   There is no way I can go back through the forum posts from my phone