Chiari Malformation Community
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Avatar universal

Chiari Surgery

Im about to have Chiari Decompression and i am rather scared, i hear alot of stories about repeated surgeries or symptoms coming back after surgery. have these things not happened to anyone?
12 Responses
1925822 tn?1333709217
...and i heared a lot of good things too.think positive u might get relief soon!
620923 tn?1452919248

  Hi and welcome to the Chiari forum.

Yes, it is possible that ur symptoms come back, or u have other issues post op u did not have b4 surgery...there is no way to know how ur body will respond to the meds or the surgery itself.

The need for more surgeries in many cases is due in part to a Dr that was not well experienced with this condition, that may have chipped away too much bone and the condition cerebral ptosis  also known as brain slump.

Another surgery would be done to keep the brain from slipping down....

One other issue can be from having a dura patch placed and having a reaction to it...many times knowing b4 if u have ehlers-danlos* can help, those with EDS* tend to have a higher rate of rejection so their own skin is used for a patch...so they r less likely to have an issue.

Everyone's experience will be different, and having a true chiari specialist is key...and if u have doubts, or do not feel all the testing was complete for related conditons....do consider getting a 2nd opinion from a chiari specialist....

  Once u have the right Dr they should be able to calm most  of ur fears...but this is major surgery and to be scared is normal....

  Many of us post our surgery experience in a journal on our profile page, feel free to read mine...click on my name,

  Please keep us posted as to what u decide and when

1306714 tn?1327260680
Us who have had surgery know your fear.  We have had it also.  I am one of those who wasn't as lucky as other.  I had to have 4 surgeries in all, but it didn't have anything to do with the surgery.  My NS was very experienced and he say's he has never seen a patient like me.  MMM!!!  My body wouldn't except the stitches in the inside of the head.  After the 4th surgery thank goodness his last procedure work's.  I'm not telling you this to scare you, because I don't think my sisuation would happen to other's.  It is all about my own body.  I just wanted to let you know some of us have to deal with other issues.  Just go into with a posiitive outlook, it does help.  I have no regret's having the surgeries.  In the long run which I am still healing after 17 mths, but it is a slow healing process for some of us.  Every thing will work out in the long run.  Just know your not alone.  We understand what you are going through.  Wish you the best.
Avatar universal
Hi there.  One thing to remember, especially looking at this forum, is that a lot of people post about their lives pre-surgery and for a few months after surgery, then they continue on with their lives and don't come back and post.  Basically, people usually post here because they have an issue they want to discuss.  Many more people have this surgery, potentially post on this forum for a few months, then go on to lead healthy lives.

At the same time, surgery is a treatment not a cure.  You may deal with some level of symptoms your whole life but the vast majority of people are better off and have a better quality of life post surgery once they've fully recovered.

I definitely understand your fear!  I'm 3 1/2 weeks post-op, I remember it well.  But the best thing you can do is think positive thoughts and realize your fear is normal, but it doesn't need to control you.

Wishing you the best!
1979479 tn?1330378618
don't we wish there was a cure!
Avatar universal
I had two surgeries in 2006.  I have felt a lot better since having the surgery but I have had a few symptoms come back.  The returning symptoms are not nearly as intense as the ones were before my surgery.  I can promise you that it was well worth it and I would do it again.
Avatar universal
thanks everyone, i am scheduled for surgery next week at duke
620923 tn?1452919248

  May we ask the date, I post a prayer thread for our members and would like to post one for u : )
Avatar universal
Like Selma said, THINK POSITIVE. For me, in the end, after 3 surgeries, about 7-10 years apart...it was well worth it. Though it does not get rid of all the symptoms, it makes me able to live life as best I can.

Like megthp mentioned, most people here post because they have symptoms or issues...think about all the other Chiarians out there who are not posting here? That means they are going about their "normal Chiari lives."

Nothing helps us the most post surgery than our will to get better and get on with our lives. BE STRONG.

Sending prayers your way and GOOD LUCK!
Avatar universal
Surgery is Feb. 16th
1947337 tn?1331427490
I know exactly what you are going thru...I do not have a date yet for my surgery but I do know that it will be in the next few weeks..they are working me into his schedule. I do have lots of fears but am hopeful that this will give me some relief. I have 3 children at home 10, 12 &18 and they are scared too. That is what makes it hard for me...as a mom you try to comfort your children but its hard to comfort them when I\u are scared yourself. Even though the doc's say this is not as bad as it sounds...they are still messing around in your head! Anyway, I hope and pray that all goes well with you during your surgery and recovery!
1823499 tn?1370093889
Make sure you have a true chiari specialist. Make sure they do all necesary testin pre op and you will be just fine. My ns only went off an mri from 6 months before my surgery. He did no further tests and post op i have some same issues along with few new ones. This doesnt happen to everyone. You will be fine. You will come post op and tell us about your amazing recovery!! Praying for you.
<3 Dana
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