Chiari Malformation Community
Decompression Surgery for less that 5mm
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Decompression Surgery for less that 5mm

Has anyone had surgery for a herniation less that 5mm? If so, or are still waiting on surgery. What has been your
experience with the process, with not meeting the standard criteria for CM Diagnosis?  
what do you do especiallly when you are symptomatic, and is affecting your quality of life.

what to do then? Any advice or knowledge to pass along will be appreciated.
18 Comments Post a Comment
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1925822_tn?1333709217
Hi ceo...as i wrote u chiari is not only chiari and not only assumed by measurement.i dont know if u r with a true specialist...but they will check u for so much more...like syrinx...how it affects brainstem csf flow,sleep apnea.eds,craniocervical instability....all these things can affect u additionaly.it is not sufficent to just messure ur hernia.
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1823499_tn?1370093889
Irislita said it best. Its not the length that's the issue its the width and shape. Drs go by length which isn't usually the problem. You need a cine flow to see whether there's a blockage of csf flow sweetie. If there is a specialist will see you.keep us updated please, Dana
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620923_tn?1405964489

  I have to say ditto to the above posters...the problem is too many Drs use a standard of tonsil herniation to determine if someone has Chiari, when Chiari is the malformation of the skull, making it too small and the herniation is a result of that.

Many can have herniation's with no symptoms, such as a 13 mm herniation that is long and thin will not block CSF flow, but a 2mm herniation that is short and stubby will....it corks it up.....and as mentioned above, u have the EDS, instability, syrinx's and tethered cord to consider as well as a retrofelexed odontoid...these r more of an issue then how long the herniation is.

BTW- we usually get one measurement when there r usually 2..as there r 2 tonsils...a left and a right...mine were 6mm and 4mm and it was my 4mm herniated tonsil causing the most issues.....and I had surgery.

What I did was kept going until I found a true chiari specialist that knew how to help me.....the others I saw did not.
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3057101_tn?1360377709
Irlista. He was neurologist, not neurosurgeon , I felt with myself not  knowing about chiari. I felti knew more, he said it wS completely normal, the overcrowding and that it is very common. he lost me have way, it waz obvious he knes nothing about.chiari. He just started to ramble, using all these random explanations. Zo I said iv its not chiari, ms etc.. Then I want to find out what is going on with me. He said Mri was normal and will do an emg. But after that he would just be fishing... Really? It s  that not the reason he becAme a MD to help people, and cure them. I just dont get it. I dont understand, iz it laziness??? It must be for the money...
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620923_tn?1405964489

  I think it is the society and the quick to sue and lawsuits that keep so many Drs from wanting to deal with situations they r not familiar and then they have ego's that they r struggling with as well......

But for the most part, I also feel many r lazy, they r not HOUSE and I really do not think there r Drs like that, there r chiari specialists that research Chiari and related conditions, but I really do not believe there is a Dr that works and deals with patients(not the hostility) seeking out what it is, it is US the patient that does all the research  to figure out what is wrong....JMHO
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3057101_tn?1360377709
I have been reading alot on studies, journal and research on chiari and they are so.many other  diagnostis that can be performed. Yes, I  read aboit asymptomatic patients with larger herniatin. Most patients that are exhibiting symptoms have  herniation less than 5mm.  The patient.population with  most.complicatin and surgery performed are those in the less than 5mm , chiari type O.  
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3057101_tn?1360377709
@ selma . That is my plan, not wasting my time and energy. Im going to find A true.chiari specialist. Not going to see anothed one of  these fools. Another visit , like the last to neuros I saw, I might have.to.commit myself to the  Pysch ward. Lol!!  I  already feel like, im losing it.
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620923_tn?1405964489

  I know how u feel BTDT and that is just what I had to do....do u have a specialist in mind?

It is so true it is not the length of the herniation but if it is causing a CSF obstruction....overcrowding caused by a retroflexed odontoid will cause more issues then a 13mm long thin herniated tonsil....

And there r more Drs out there that do not have a clue as those that do.

Sad really, this is y it is so important for us to educate ourselves and know what the Dr should be looking at and saying.

Take a deep breath, and then exhale....hang in there and keep us posted on who u get in to see.
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3057101_tn?1360377709
I so wish, there was a real world House. Love the show!   Yes, their  ego , is the worst. .I find that unless is starring right at them. They just dismiss it.  I will say what I hate the most, is when  they dont know what is going because is not obvious, they attack your phycological well being, or you are depressed.

I am not depressed, my health and quality of life are suffering.  Is not depresion making me feel sick, is my sickness making me feel depressed. The nerve of him, to ask for my Pysch
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3057101_tn?1360377709
Honestly, I dont even know where to begin. I did print out the list , on the health pages.  A few sites like WI institute, I think it is. I know  definetly will have to travel. Then there is the Insurance aspect.i havent talk  to them yet, about coverage. Did your insurance cover everything?
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620923_tn?1405964489

  Oh I know, I was sent to a shrink when I was in High school and given meds, and was not dx'd until I was 48...so, trust me, I know.

TCI in NY is now taking ins so do check there they r tops as far as that goes along with Dr Oro, Dr Henderson and Dr Rosner....if I was going to travel it would be to one of them.

I had a little out of pocket to cover, not much but back when I went the NS did not work with ins, and now they do, so it is diff.....more may be covered depending on what ins u have and ur deductibles etc....I went so often by the time my surgery came I had all that met...lol...

There was one outstanding bill and it was a big one, but it was a filing error  not something I should have gotten and it was all taken care of....so, pay attention to all u will owe money to, ask up front and ask ur ins comp if they work with all that will be providing care to u....as it is not just the hosp , and ur NS and NL, u have the others in the OR as well so check it all closely and do not just pay bills u get call and ask y u got it first, many times it can be they have ur numbers transposed and it does not go thru...it happened several times with one provider and almost 2 yrs later finally fixed....

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3057101_tn?1360377709
I was looking.in to tci, i.have family in nEw york. Is like actually where  I am, right now I am.virginia. My husband is active duty, so I have  Tricare , it ex great if u are a healthy person in general. Since there is no out  of  pocket. But many doc dont accept, so i.will have.to.switch to a standard option, I guess like a ppo plan.
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620923_tn?1405964489

  Oh really, what part of NY...my DD lives up there as well....she has been all over Manhattan as she went to NYU for her Master's, then  lived with her college roommate for a while when they got jobs....now she moved up to the Bronx closer to her job.....

When I had my surgery she was in Stytown, not sure if u know that apt complex, it was close to a bridge we needed to take to head toward TCI, so it was not a long distance to go...but add traffic and it could be states apart at times...lol...

Well I would suggest calling their finance dept. to see what they work with and what they don't so if u switch u switch to something they do....

  Good luck and like I said keep me posted.
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3057101_tn?1360377709
No I dont know the complex. Was it the bronx?? Or Manhattan?? I m from the bronx mainly, before moving we were living in Throggs Neck in the Bronx., Oh how I miss it. There is no place like NyC.  Yes ,.before anything I have to check the whole insurance business. ... That should be fun!!!!! I will. tc
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620923_tn?1405964489

  Manhattan, right along the FDR....

Well my DD is in the Pelham Bay area...so not far from Throggs Neck area....

I love NY too....I have pics in my profile from her place on Lex ave.....Spanish Harlem ....
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3057101_tn?1360377709
I know the area very well...not far at all but a.couple train stops on the 6 ....
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620923_tn?1405964489

  Well the 2nd to last stop on the 6 is outside her living room window....I can stand there and watch the train as it is elevated there.

We will have to let each other know when we r up there, mayb we can meet up : )
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3057101_tn?1360377709
Yes, I will ley you know!!! I miss it.especially my job @ united nations, but.I started to get sick and we were moving anyway...that was last time I worked 3 years ago.... oh how I miss my Health.....
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