do so many of us suffer the same kind of pains after decompression?
taking all other issues out of the equasion like cervical stenosis,shrynx(?sp),EDs,etc..
and i understand there is no real "cure", but why do some NS's say your cured?
just a question that poped into my head...sorry if its a stupid question
I so hate to tell you this, but Chiari is in of itself a 'birth defect'. There is no cure for a birth defect. The surgery does give you the possibility of reducing symptoms or reducing their effect on the chiarian. It does not cure it.
Your other question, because they don't know what they are talking about. Bottom line with some of them is the almighty buck. They are specialists, you and their staff are supposed to worship them rather than God. If they admit to you that they don't understand, well where does that leave their position they've worked so hard to obtain? All to many Specialists and some PCPs as well still haven't grasped the idea that sometimes say "I don't know, let me find the answer to that for you" is really what their 'customer' wants. Every other profession [well except for maybe lawyers we all know they know everything, local one here even claims to know all about Chiari but claims it eventually makes everyone with it retarded], is expected to be honest with their 'customers'. Drs in general though are not, they decide what they feel you need to know and we are supposed to accept that.
IF you have Chiari, if a someone you Love has Chiari, and a NS has told you it's cured or will be cured; RUN as that quack is like the lawyer above. He doesn't have a clue what Chiari is or what to do about it. That quack is probably the hack or butcher that will ruin your life. I'm not normally this outspoken but this is a very sore subject after the battle I've been through with quacks over Chiari. I suspect many others here feel the same way though. We are taught Drs, policemen, fireman etc are all to be trusted. DRs being the God of them all. Well they just are not. I personally respect a Dr who can look at all the evidence and tell me that he/she has tried but just can't figure it out or suggests we present it to a diffent Dr for their input.
Ok, back to my rocking horse. BTW- it is no way a stupid question. If there where a way to get this info out to all neruological patients, who are actually Chiari patients undx'ed, ahead of time just think how much pain and anguish it could stop on the behalf of so many people! Great Question IMHO.
I must agree with Wolf..that many times we get a u will be sured from a dr that is not informed or has a God complex and feels since he touched u , u will be cured....medicine is a science that drs practice at...it is not perfected and no one can say how u will respond to a procedure...we can only hope our overall condition improves after surgery as the surgery itself can cause addition issues we did not have prior to surgery......that is y it is and should always be a last resort.
And he is right it is not a stupid question....a question not asked is the only stupid one bcuz u will never find the answers......
There r some that have a get recovery from the surgery, but yrs later develop issues...and I pray I am so lucky to have a few yrs like they had.....I am used to most of my issues as they have been with me my whole life....at times they r worse than others , but I can deal with that knowing it will get better.....
The biggest issue the surgery should provide is to slow the progression and give ur spinal cord more space to help stave off ne possible perm nerve damage.
Yeah I agree too...if a NS tells you that it will cure you then run the other way..they either don't know enough about it or have ulterior motives..
My NS always said from day one that he could guarantee me that it would stop the progression and that any resolved symptoms are just gravy on top of that. Of course, he told me that he hoped it would do more but that no one could really know, that it would be a wait and see. Not the most comfortable position for us to be in but at that point, I had to take what I could get.
After two months post op..I am feeling like things are still getting better which is encouraging..however you do have to go through a lot of pain and discomfort to get to that point. There were times I wondered if the pain and struggle was worth it but I am definitely sure now that it was. I guess it's just something we have to go through..
And I think we should have a rule...there is never a stupid question on this forum :)
thanks, the reason i asked the question is because i was reading some posts, about chiari and ppl saying their doctors said they are "cured" knowing what my NS said I didnt think that was right because mine told me there is no real cure, this will just minimize your crowding and hopefully delay progression..then being here and knowing even those of us that are zipperheads continue to have some issues, maybe not immediately after decompression but maybe months or yrs down the road. so i was sort of confused by the "your cured" statement...
now i have had a NS tell me that the surgery would "cure" me, but she wouldnt do the surgery because i could still breathe, guess it was a good thing she told me that and i didnt let her take a knife to my brain...lol.....i kinda ran away slightly scared and completely confused...from her statement...
i think its important to get it out there that THIS IS NOT A CURE!!.
I know...it is hard to know when u see a dr that has a specialty like NS and we can get such conflicting statements over the same condition....we need to do research and have some idea as to what is going on to know whom we can trust.
You're right it is really important to get that our there...even though I was told by my NS that it wasn't a cure...all those posts about people being "cured" set me up for unrealistic expectations. So, when I came out of surgery and had most of my symptoms plus a few more...I really got depressed about it. Now though, after 2 months I am feeling much better about it and that is the message that should be spread around. That the surgery can really get you results but you have to give it time and patience!
Patience is sometimes the biggest obstacle we face and it is our own doing...but if we push to do things too quickly after surgery we can lose what ever benefits we may have had if we would/could only wait.....
We always have said there is no cure, but many will listen to what the dr tells them and they so much want to get back to their old life, that they listen to the dr that says I can fix this and cure u and promise this and that....and there is no way.....
I get upset when the dr says u can go back to work at 4 weeks or 6 weeks....how can u say that b4 the surgery is done to see how the person responds to the surgery and meds, and the patch....ect.....
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