Chiari Malformation Community
So many questions
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So many questions

I want to kno how fast does Chiari progress? Is it months or years? Can it kill you if you don't have surgery? And why do they cauterize the herniated part do we need that?

I was just diagnosed on the 10th with Chiari I, with syringomyelia. It was found on accident. I have already gotten a second opinion as to diagnosis. Was hospitalized for pain control. Met with the NS and specialist the following day. Awaiting a surgery date. I have a 7.5mm herination, crazy pain, motor deficits(mild in my opinion), neurological deficits (also mild but bothersome @ times), respiratory issues (mild IMO), my eyes feel funny, my head feels to heavy for my body so i tend to hold it down which hurts, and choking on food/liquid sometimes.

I'm a newly wed and have a new baby so this is really hard to digest. Not to mention, IM TERIFIED of them cutting on my head and spine!
Tags: Chiari
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I am wondering y u r being scheduled for surgery is u feel ur symptoms r mild?....DO u know if u have a CSF obstruction?

And if not, then I would ask about waiting and being monitored....especially with a new baby...goodness, u need to be able to lift the baby and will not be able to post op...really should not b4, but if u have no ill effects then just do so with care.

The swallowing issues is a concern...and could be y ur Drs want to do surgery...as for the cauterization of the tonsils, they do that to make them retract out of the way...they chip away some bone of the vertebra to make room and doing both allows that they do not have to take away too much bone...other wise u could end up with cerebral ptosis....

We all respond to this surgery differently...and many have long waited for a dx...with severe symptoms....

I would suggest u get a few opinions and be sure they r from true chiari specialists....not just a NS that is top in his field....that is not the same thing...u want the best and u want them to rule out all related conditions B4 u have surgery like tethered cord, syringomyelia, Ehlers-Danlos, sleep apnea, ICP, PTC.....

  As for chiari causing death...most of what u read on line u will find that it will not...however, it is possible if left untreated that it could indeed lead to death...we have lost many to chiari related deaths....and u have to keep in mind this surgery is a major surgery, it is not a simple procedure....

I am not saying since u have chiari u may die, what I am saying is some develop other issues and they can often cause death...and again if left untreated it could lead to paralysis or death .

DO get a few opinions...find out if u have a CSF obstruction and other related conditions b4 u have surgery.

    "selma"
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1963662_tn?1328385914
I don't know if it can kill you, but i had the surgery just for the malformation.  I had a 15mm herniation.  I know that for me, my symptoms are slightly better.  On Tuesday I will have the MRI to look for a syrinx.  My pain specialist is convinced that with my symptoms, I must have a syrinx.  I have read about Syringomyelia.  I read that if left untreated, it can destroy your spine and possibly leave you paralyzed.  But, i've also read that sometimes it won't.  I would personally get the second opinion as to wether or not the spinal surgery is needed. I read that they will usually try the decompression first and it may relieve the syrinx.  I feel the same as you, I'm terrified.  The decompression wasn't that bad, to me.  I have a 2 1/2 year old at home, and if I need a spinal surgery, i'm terrified that something might happen.  
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1306714_tn?1327260680
Welcome to our Chairian Forum,  Some of us have been where you are at right now.  The 1st step you want to do is get all your MRI , CT scan etc I also started a list of question's I needed answered also  This saves time.  Also get more than 1 oppionion.  I actually seen 3 different specialist until I found 1 that I was comfortable with.  This journey for some of us have been a hard one.  It has to be twice as bad having a little one at home.  I hope you have family member's or friend's that can help you when the head aches appear.  Have decompression surgery don't cure us sadly to say and for some of us it is a long recovery.  I sadly had to quit my job because it was to physical.  So the excetance part of Chairi is sometimes hard to deal with.  I don't thin Chairi kill's us, but we do have to alter our lives because of it.  I was dx'd when I was 45 and had surgery when I was 48, so I can say it does get better.  I am also glad you found this site because we are all on the same journey as you, but just in different phases of it.  We are all here to help each other understand and get answer's.  Thank goodness for our guider on here Selma because she will sent you in the right direction.  Wish you the best in finding answer's. Keep being persistance.  You know your body so just try to listen to it.
Wish you the best..
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I am wondering y u r being scheduled for surgery is u feel ur symptoms r mild?....DO u know if u have a CSF obstruction?

And if not, then I would ask about waiting and being monitored....especially with a new baby...goodness, u need to be able to lift the baby and will not be able to post op...really should not b4, but if u have no ill effects then just do so with care.

The swallowing issues is a concern...and could be y ur Drs want to do surgery...as for the cauterization of the tonsils, they do that to make them retract out of the way...they chip away some bone of the vertebra to make room and doing both allows that they do not have to take away too much bone...other wise u could end up with cerebral ptosis....

We all respond to this surgery differently...and many have long waited for a dx...with severe symptoms....

I would suggest u get a few opinions and be sure they r from true chiari specialists....not just a NS that is top in his field....that is not the same thing...u want the best and u want them to rule out all related conditions B4 u have surgery like tethered cord, syringomyelia, Ehlers-Danlos, sleep apnea, ICP, PTC.....

  As for chiari causing death...most of what u read on line u will find that it will not...however, it is possible if left untreated that it could indeed lead to death...we have lost many to chiari related deaths....and u have to keep in mind this surgery is a major surgery, it is not a simple procedure....

I am not saying since u have chiari u may die, what I am saying is some develop other issues and they can often cause death...and again if left untreated it could lead to paralysis or death .

DO get a few opinions...find out if u have a CSF obstruction and other related conditions b4 u have surgery.

    "selma"
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1987680_tn?1329192047
I've had 3 opinions, one of which is a Chiari specialist, another is ortho (he discovered it), and an NS. All agree; surgery is necessary. The specialist and the NS are doing the surgery. I have good ins (for now) and once I brought the report from the ortho on 1/0/12 to the ER they admitted me immediately for pain management, NS consult, specialist consult and a full spinal and brain MRI w/wo contrast all n 2 days.
Yes I have sleep apnea (dianosed 3 weeks ago). How does apnea relate to my dx? I do have a syrinx from c2-c6. I have 3 herniated disk in my lumbar spine (requiring either cortisone inj or surg) kinda wondering if that is what caused the syrinx?... Injury occurred may of last year. I'm an RN so I MAY tend to minimalize things. Everything seems mild to me except the pain. I can still breathe on my on and my sats r fine. I jus have to take deeps breaths every so often. I choke at every meal and it feels like something is stuck n my throat but I can cough to clear airway and the feeling of something stuck is jus bothersome. Numbness in legs is very annoying but I haven't fallen. Weak/numb hand is annoying but my hubby is here so I use his hands. My baby turned a year day after Christmas. My hubby lifts her now anyway because of my disks. I guess my thinking is if surgery may make me worse then why do it?
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620923_tn?1405964489

  SO u had an injury?...sorry I am not sure if I am following u...am I getting this right, u had an injury to ur back?

If not, the disk issues could be Ehlers-Danlos, so do get checked for that and ask what type of surgery r they going to do...one with dura plasty  and if so what type of patch...this is very important!!!

The syrinx, syringomyelia was most likely formed as a result of a CSF obstruction from ur herniated tonsils....but, disks could also cause a CSF obstruction, but if u have Chiari it is more likely the culprit.

SO ur symptoms r more then u mentioned....ok....well, that is a important part of deciding as well as how it is affecting ur overall health.

I will send u a link about the sleep apnea issue.....

     "selma"
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1987680_tn?1329192047
Yes I herniated 3 disk in my lumbar spine catching a patient back in may of last year. The back surgery is to repair/replace the disks. I also have a torn rotator cuff tht needs repair.
Essentially I'm looking at 3 surgeries. Chiari, rotator cuff, discectomy. That's a lot of cutting. Trying to figure it all out. That's all.
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620923_tn?1405964489

  Oh my goodness....u sure have ur fill.....so ur syrinx was the result of ur injury.....

  Did ur chiari specialist suggest a couple options as to how to proceed?

I would imagine if u have a syrinx and a CSF obstruction at the disk level injury, that is where u need to start....taking care of it may also relieve many of ur symptoms as ne CSF obstruction will cause symptoms and u may feel much better and able to go for a while b4 u need more surgery.....

   I pray u get this sorted out soon

     "selma"

PS- Is this a WC claim then too?
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Selma,  I have had neck and back problems since I was in an automobile accident in April 2006.  I'm wondering if the continuous / chronic pain I have experienced for so long has made my Chiari worse.  I had a MRI of my head yesterday and will have EMG's on both arms tomorrow.  

Thank you.
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620923_tn?1405964489

  It is possible it added to ur pain issues, and I am sure the accident triggered ur chiari symptoms to flare...with that as a catalyst I am sure factors in to all of the symptoms u r dealing with.

  Ne continuous pain will make us all feel worse overall.....if pain itself can make ur chiari worse, I am not sure...but it will not help the way u feel.The jarring from the accident could have shifted the tonsils down further then they were b4 the accident....

  Good Luck with ur EMG tomorrow...

  "selma"
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1987680_tn?1329192047
The lumbar injury is WC. The syrinx is not it is in my cervical region. Yeah. It's a lot to sort out. I'm a bit overwhelmed.
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Selma, in response to your original question to deatrapurplerm about why surgery was suggested, might it be because she had a syrinx? my NS said that anytime a syrinx is present, surgery is recommended. my symptoms are very mild (no deficits that I can recall.. just the occasional headache) but i am still going ahead with the surgery.
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620923_tn?1405964489

  Hi....yes, most NS's will suggest surgery when a syrinx is present, but some also will look at the size of the syrinx and symptoms...and it was her description of them being mild, that made me wonder....


But most surgery is done when there is an obstruction to avoid the formation of a syrinx....

And it was difficult to know if her syrinx was the result of the disks or chiari, so which surgery will actually have an effect.....

  She has so much going on and as she said  she is still trying to sort  it all out...
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1987680_tn?1329192047
Well I meet with NS and anesthesia on Friday. Date is tentatively set for the 26, which is next Thursday. I want to see if he will push it out til after my 41st birthday on 2/23. Wow things r moving quickly.
Strridge, how did ur EMG go?
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620923_tn?1405964489

  Do keep us posted on how things work out !!

    "selma"
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EMG's showed no pinched nerves.

My neurologist had my brain MRI report but hadn't looked at it so he said I had to come back next week.

I went to the hospital where the MRI was performed and got my report.  I had specifically requested information regarding the Chiari Malformation; however, didn't see anything on that.  The report stated I have 6-10 lesions on my brain of unknown origin...  (wording is a little different; nevertheless I'm confused and nervous).  I faxed the report to my NS and am waiting for a call back.  I also call the neurologist (still no call back).  Today my regular Dr. discussed increasing my Gabapentin to at least 1200mg per day and if that is enough I'll up it to 1500mg per day after one week of trying the 1200mg/day dose.  My symptoms (the burning and hurting in the back of my head, burning all over my body - different places at different times, pin sticking feelings, right index finger feels raw, numb, etc  almost all the time) keep getting worse.  These symptoms seem to be worse with my increased neck and back pain. I thought I was just suffering from neck and back problems from a MVA in April 2006.... within the last few weeks I've learned about Chiari and now brain lesions.  And.... my allergist's office called today ( I had my 6 month check up yesterday ) and said I need a chest x-ray because something looked slightly abnormal on my May 2010 report ??????  what on earth is going on?  I had q's RE some of my reports and asked about a 2007 report regarding more density in one lung so they checked my reports and called me today and told me this.

I'm trying to work 4 part-time jobs, take care of a 3 and 6 yr old (with little help from my spouse).  Our home is a wreck and I'm trying to research all of this.  i need help!

Thank you!
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Has anyone suggested a laser type surgery as a possibility?  

I've been told I need a neck fusion at C5-6 and back at S-1 and L-5 (I'm so tired I don't know if I have these abbreviations correct) but would much rather have a laser type surgery (if possible) vs the fusions.

I've read information about many problems with the cervical fusions and saw a post that one patient went to the Laser Spine Institute and had a laser surgery which helped him enormously and he hasn't had to have the recommended cervical fusion which his NS wanted to do.
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I was diagnosed with Chiari 1 over 2 years ago and within a week of finding out and taking meds I also found out I was pregnant. I haven't gone back to the doctor or taken any meds for it. I still get headaches really bad at times but I just deal with it. And I still have random numbness and tingling in my hands and other parts of my body. It only partly affects my quality of life so I'm not too concerned, but I am starting to wonder about the "What if's."  I want to know the reality of the situation if I don't take any medications for this. I wasn't in need of surgery at the time when discovered but that was 2 years ago. Just want to know the long term effects if left untreated. Thanks!
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

The possibilities are different for each of us...as it depends if u have a CSF obstruction...as one can cause the formation of a syrinx*, a cyst like cavity that fills with CSF and this can grow very slowly or at an alarming rate...these cysts can compress the nerves in the spinal cord, left untreated can lead to perm nerve damage.

Chiari has several related conditions and Syringomyelia (Syrinx*) is only one them....there is also sleep apnea,tethered cord, ICP, POTS, disk issues, autoimmune thyroid issues, connective tissue disorders like Ehlers-Danlos.....

SO those with Chiari and feel they do not have that many symptoms bcuz the pain levels are low or bearable many times this is bcuz u have lived with it so long u adjust and consider how u feel to be "normal"

It is best to have tests to monitor ur condition and compare to those first MRI's to make sure u do not have an issue where this will affect u and ur overall health.

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Hello, I just got diagnosed with Arnold's chairi malformation about a week ago. Discovered on a MRI checking my vision issues! I  have blurry vision and see floaters! So I been researching it online and learning all I can! I see my regular Doctor tomorrow and a Neuro on the 27th! In this small town I sure hope he has experience! From what I learned I think I have type 1 or the doctor might tell me on the 27th! He is suppose to decide if I need surgery! but I am scarred of that and will let that be my last resort! My symptoms are headaches, blurry vision, floaters and blind spots, droop in my left eye, dizziness, clumsiness, memory issues, sometime I cant get words out! I even lose my balance and it can take me minutes to get up! I have pains in my hands but I thought it was corpal tunnel! Sometimes I even get tired! I also have pains in my neck and shoulders! Is this type 1??
I am researching for now other things maybe I can try besides surgery! I have epilepsy and take seizure meds for that! Surgery from what I read about it is very risky so I hope too hang in as long as I can and try other stuff! So that would be a scarry word if the doctor suggest it. Would it correct my vision issues? I have cataracs as a secondary condition and already legally blind my vision is blurry!
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any suggestions?
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

There is no way to know by symptoms which type of Chiari u have as they all have similar symptoms...plus there are other conditions with the same/similar symptoms,.....so more testing is required b4 surgery is considered.

A CINE MRI should be done to see if u have a CSF obstruction, and u will want to rule out related and non related conditions as some can affect ur recovery should u go forward with surgery.

Make sure when u do decide surgery is an option to see true Chiari specialists to find the Dr right for u, do not go with a Dr that has treated this condition....u want one well informed and experienced with the related conditions as well.
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Thanks! I am not sure if the doctor that is being refer to my case is experienced I will ask on the 27th, if not I am going to the doctor in Birmingham I found on a website who dose! Thanks for the helpful suggestions!
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620923_tn?1405964489

  No worries....keep us posted on ur progress in finding a Dr and care <3
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New to forum posting. My daughter had the Chiari surgery approx. 14 days ago, the first 9 she was in so much pain and had to keep going back to the E.R., she is doing better now, and feels better. Headaches prior to surgery have stopped. She is 23 yrs old.
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I am glad to hear she is feeling better....post op it is important to keep on a pain med schedule and ahead of the pain or the meds will not work....

It is very important that she rests, rests and rests some more at this time...no bending , lifting, pulling , pushing etc....walking is good, and neck exercises to keep the muscles from getting tight, and scar tissue from forming....other then that she should take it easy.

keep us posted on her progress <3
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