Decompression Surgery , Yay or No Way?

Hi Everyone!!

My name is Crystal and was diagnosed in Sept.2010 with Chiari 1 malformation and Ehlers-Danlos Syndrome. I have taken the Topamax, Diamox and pain meds. I even did the physical therapy route, but nothing really worked well or long enough. I even have the Chisoft Collar and the Aspen Collar for car rides. I have been going to the Chiari Instute in NY and have been given the option for a relatively new surgery for EDS patients with Chiari. One that doesn't involve screws and rods holding my neck into place. I was wondering if any of you would or wouldn't reccomend surgery and what your experience was like. Are there other options out there? Will there ever be a chance for me to be "normal" again and to not be on Disability? Thanks for all your input :o)


THANK YOU!!! You are wonderful and gave me more information that I had ever expected. I know that I need to make this choice, but my greatest fear is to got through all of that and just be the same. I have left side numbness to the point that my ability to walk an issue. Dr.'s are not sure why only my left side is the issue, but the numbness spans from my head to my toes. I do have tingling in my right hand an foot as well. Everythis for me happened so suddenly. Like I had said before they originally thought I was having a stroke with my eye and face droop and left side numbness and paralysis. In the begining symptoms would come and go and I was afraid I WAS having strokes and they were just not finding them. Then over time my symptoms and episodes got worse. I had ringing in my head, left eye vision loss, left ear hearing loss, issues with "brain fog", slurred speech, attention issues and spurratic sharp shooting pains in my head. I never realized I had headaches until I went to the Chiari Instute and was given proper meds and the collars which gave me temporary relief. I had been having head pain since I was a child and never realized it. I also grew up with the room spinning, my vision going black, my vision turning this green color after be outside on sunny days, stars and rainbow bubbles floating in front of my eyes and be very clumsy. I NEVER thought they were signs of anything wrong, I thought that this was NORMAL and never once complained. Come to find out much of it was classic Chiari symptoms.

Now that I am done with that little story, time to get back on track which I often loose my train of thought (LOL)...

As I was saying THANK YOU for telling me your story. I just don't want to do something that won't work or even worse put a greater burden on my husband, children and family. I also want to make an informed decision and Dr.'s can tell you all the medical mubo jumbo and give you facts and numbers. I just feel that who REALLY knows better than someone who is sharing your shoes.

Thank you again. My thoughts and prayer to you.

Sending some LOVE right back to you,


Susan Erickson said:

Hi Crystal,

As for surgery, let me give you some more of my background to understand my experience a bit better.....As with symptoms of Chiari, we are ALL DIFFERENT and we all have different reactions to surgery as well.....As a General Rule, The Decompression Surgery has an 80% success rate.....Meaning for 20% of us that have it, it does not work or aleviate what it's supposed to....But, before I get to that, let me tell you (assuming the Doctors have not explained this yet) but the surgery basically has two/three main purposes that they will consider it a success.....Since headaches are usually the main and most painful/problematic symptom, that is usually the first thing they say will surgery will help with as well as some symptoms however....the two main purposes of the surgery are this:

1. To make more space where your brain is pushing on your spinal column and make more room for our "big brains" and release the pressure it puts on our spinal column which causes alot of the Neurological type symptoms....Such as balance, vision issues, vertigo, numbness/tingling in all extremeties, even face and pretty much anywhere it can show up....Also, those numbness/tingling and type problems are usually a sign of paralysis coming....I had already lost 50% feeling in my legs when I had surgery, so once the damage is done, they can't make it come back when it comes to nerve damage.....

In the middle but yet, VERY IMPORTANT FACT........DECOMPRESSION IS A "TREATMENT" NOT A "CURE"....That is a very harsh and hard and depressing thing to accept, at least for me.....Those of us who have Chiari have a Progressive Neurological Disorder.....Meaning, it is not a matter of IF it gets worse, once the symptoms etc start, it then becomes gets worse....This was the most disturbing thing for me to come to terms with and since I've had the chronic pain issues and awful days etc for 20+years......It may have been easier for me to accept, as I've been in pain for so long, I figured "Well, it can't actually hurt me to have surgery, what is the worst that could happen? It not work? Then, I'm just in the same pain I was in but the paralysis won't get worse....I have a friend on support that didn't have surgery and ended up permanently paralyzed from the neck down....I don't tell you about that to scare you, but to give you an idea of how quickly the symptoms can become very, very serious.....

2. The other purpose, which I sort of put into #1, sorry, I'm easily to slow the progression of symptoms down so that we are not permanently paralyzed or the symptoms don't progress as fast.....It does slow down the symptoms, at least that is the general concessus....Although, some symptoms you have now, could go away with surgery but then you could have other symptoms after surgery instead......

I know what I've said already, is alot of information to take in already but you said not to sugar-coat it.....Which is also how I trying to give you my experience combined with what I do know along with the possibilities.....All of us respond different to surgery....My case, I feel the same with the pain in my head and neck as before surgery, which I probably should feel better by now, however, I know my body so my feeling is that since ALOT of the symptoms I was having, DID GO AWAY....such as alot of the balance issues, and the numbness/tingling ....that was all the wayup my arms, shoulders, face and mouth....My symptoms had progressed very rapidly....My surgeon was worried it was going to cause serious paralysis....Most of the time the surgeons still basically leave the ultimate and final decision up to us because they can't guarantee anything and my NS told me, I can't tell you what will get better or worse, since every patient is so different and the surgery, well our brains DON'T LIKE CHANGE so there really is not any way to be certain.....

It has to be something that you can do the research and talk to everyone....You will have to make the ultimate decision to have surgery or not....If they are saying that yes, they will do surgery and you are at a point that you can't work, that tells me that your symptoms have either progressed pretty quickly or that they are concerned about what can happen due to the brain keeping the CSF flow from working properly and that IS something you should very much be concerned about....

It's scary stuff and I know it's very overwhelming.......I know it's alot of information and my best suggestion is that you talk to some of the other people here, they will reply to your discussion and you'll get all sorts of different opinions and the absalute best thing you can do is read and get info, one of the best websites for info is and talk with everyone, gather their experience and then make the decision you feel is right for YOU....Since we are all SOOOO different....You'll get alot of different responses....I'm just giving you mine...

I am glad your here and seeking experience to go with your information to make a wise decision....You are on a great path right now I think and if I can help in any other way, feel free to let me know....If you'd like to talk, let me know and I will private message you my number.....

Will keep you in my thoughts and prayers,

Much Love Crystal,



Susan gave you great info ..i really don't have much to add..just a huge WELCOME!!!!



Thank you so much :o)

lori said:


Susan gave you great info ..i really don't have much to add..just a huge WELCOME!!!!



Thank you all so much for you help. The information is quite helpful and a relife to know there are people out there the unfortunately know what I am going through. My surgery option is fairly new and is for Chiari. It has to be done specially for the reason of my EDS (Ehlers-Danlos Syndrome). You can find out more by looking online for the “Mtstery Diagnosis” episode from 2005 about Chiari and EDS. I am just wondering IF I have the surgery will I be able to come off from Disability and go back to work? I want to do my part financially for our family and all I feel right now is I do NOT have a purpose. I can not take care of my children without help, I can not work I can not LIVE. So if having surgery will guarentee I CAN have all these things back, then I guess I would do it, but if it just snowballs into mor pain and more burden placed on my family. I don’t think I can do that. Do I make any sense??

Carla Stone said:

Hi Crystal,

Susan has pretty much said what I would tell you. In your original note, are you asking about surgery for Chiari or EDS, or both? I can't relate to the EDS as I am lucky enough not to have it! In my opinion, if I were you, I would give the surgery a shot. It sounds like you have no chance of being "normal" if you dont have it. At least with surgery they are giving you a chance at normalcy. I know you are worried about the burden on your husband and children. I would be too. What does your husband think? Is he supportive and wanting to share in researching and questioning? I hope that you have a good support system in place if you decide to have surgery. It can be a rather long recovery.

I had my decompression surgery in April of 2008. My husband and I decided to have the surgery not knowing all the facts. So I think is very important. We were not told about the surgery being a treatment and not a cure. I was devastated when that lightbulb went off. I was never told about the 20% that can end up with more and worse symptoms, or the 20% that will need a shunt put in to correct the fluid flow after surgery. Unfortunately, I fell into both of those small percentages! I am fine with it now and have had my shunt for 2 years with no problems. I have finally gotten most of symptoms and pain managed thru a pain clinic and my neurologist.

Good luck with your decision making:) I dont know if this was helpful to you or not. Please let me know if I can help in any way and welcome to our site:)