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Surgery or no Surgery??

So I was just diagnosed with Type 1 Chiari Malformation about a little over a month ago. For 5 months now I have been having horrible headaches/migraines/pain down my neck and arms... My surgeon said that my motor skills look pretty good. He said that surgery may not guarantee relief for the pain but it could. He then went on to say I could only take Tylenol Extra Strength (I have tried ibuprofen, Advil, Aleve, Prescribed Pain meds..) and nothing help[s me at all. My pain level as been at a 8-9 and it's too much for me, I need relief. My Father in law recently mentioned Acupuncture but my insurance doesn't accept it and it will eventually add up to a lot of money. My job has said that if I do decide to opt with surgery that they would have to terminate my position while I'm out recovering, I will be able to Collect and that they would hire me back per diem with the intent to go back up to my 32 hour position. It's just so much stress to think about and I also have 2 little ones under the age of 4. So with that said, My question is should I have the surgery to correct Chiari??
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

We all know too well the stress involved in making a decision as to what to do next once we are given a Chiari DX.

The next question is not should you have surgery, but how is your Chiari affecting you and your overall health? Do you have a CSF obstruction...a syrinx or other related condition adding to your symptoms?

Surgery is not a cure or fix...it is done to restore CSF flow and slow progression of a syrinx....it will not correct or eliminate Chiari.

Find  a true Chiari specialist have more testing...so you can make an informed decision..

As you found out, most meds will not help with the pain from this condition.....and as your Dr said, surgery may not help with all the pain you are dealing with either....this is why you need to know where or what is causing your pain and it can be conditions related to Chiari as well as Chiari itself.....

May I ask, ,do you work at a small business with less then 50 people?
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8170270 tn?1413845335
Hello! I'm sorry you are dealing with this! About 9 months ago I was also starting out on this forum trying to decide on whether or not surgery was for me. I was also informed that surgery was by no means a cure but I was in a state of constant pain and decided that my best hope was to give surgery a try. Over about ten years I had tried all medications available, Botox, massage, physical therapy,  yoga and chiropractors with no relief. 7 months ago I had the decompression surgery and my symptoms have Not improved plus I have new symptoms that can't go untreated. I am meeting with a second surgeon to see what needs to be done to correct the problems. It's definitely a decision you should take as much time as you can to research and discuss with your family/loved ones and doctors. And if you decide to move forward with surgery after ruling out all the other possible conditions be sure to get a surgeon who specializes in Chiari.
Good luck!
Oh and acupuncture is going to be your new favorite thing. I definitely recommend it.
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620923 tn?1452915648
COMMUNITY LEADER

  Well it could take  another 5 months b4 you know if you will go for surgery..it was a little over a year for me from DX to surgery.

This is something you take your time with..educate yourself so you can find the right Dr for you.....even if you feel the first one you saw is the right one...get at least one other opinion.

And as I always say get ALL related conditions ruled out.
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Avatar universal
I was not. I had my MRI for severe head pain for those 5 months and they discovered the Chiari. I just scheduled an appointment for Accupuncture, so i'm that helps even a little bit. I don't qualify for FMLA yet because im 5 months short of being there for a year.
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620923 tn?1452915648
COMMUNITY LEADER

  The reason I asked about employees is because with over 50 employees they must offer FMLA which will allow a full time employee working up to 1250 hour in the pervious 12 months up to 12 weeks off and the job must be held...you said they would terminate you and then rehire you.... just wanted you to know it is a law here in the states they can not terminate you for being out of work for medical reasons.

Were you checked for related conditions?.....
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Avatar universal
He also said that my tissue looked great if that helps. I'm still learning what everything means
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Also, I am aware that there is no Cure and that surgery is not a Cure... I'm just trying to get all my options out there.
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Avatar universal
I am a nurses Aide in a nursing home, we have 109 Patients who depend on us. I work 2nd shift, so it's ALOT of heavy lifting which applies pressure to my neck, back and head causing my pain to get worse. My Surgeon is the best around and has knowledge of Chiari and does the surgeries all the time. He told me I'm in no real danger and that my motor skills are pretty good. But recently my arms and hands have become so weak, I've become more dizzy and my headaches are too much to tolerate. I barely get any sleep which makes it worse. He also said that he did see some flow of my fluids.
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Avatar universal
Hi Nichole,

Surgery is not a "CURE" for chiari and honeslty it is so important that everyone understands that.    There is no Chiari specialist (which is who you need to see) that will guarantee you will be free of your symptoms.  The hope is you will but each one of us is so different there is no way to know where you will be a few years post op.  I am still in the recovery phase of surgery (6 months) and i have many good and many bad days.  Have you had all the testing to rule out EDS, POTS, Tethered cord and mri's to rule out any syrinx in your spine?  I am not trying to push you one way or another.  Just want you to get all the facts before you and your surgeon decide this is the best course of action.  If you are not in an emergency situation i would take your time to get all your testing done so you know what your outcomes to surgery will be.  You see all of those things i mentioned earlier can impact the outcome of surgery.  So getting those answers is key so you knwo what to expect.  I know this is hard with little kids.  Mine are 7/8 and it was still hard for me too.  Praying you get all the answers  you deserve and can make the best decision for yourself and your future!  God bless!

Mel
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