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 WHEN...it 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 sidetracked...LOL....is 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 was....so 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 www.conquerchiari.com 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