Interesting question. It is hard to say but some have a good quality of life others is seems continue to have their symptoms but not as bad and others get worse. A contributing factor to this it would seem to me is lack of awareness about Chiari Malformation. From my experience dealing with my doctors (Neurologist, Neurosurgeon, ENT & my GP) it has become very apparent that CM is something that most of them have not encountered before, apart from when they were in medical school. Your GP should be able to advise and provide information so that you can make an informed decision about what treatment is appropriate to you as an individual. If you dont have a suitably experienced doctor then there is a higher risk of a failed surgery. If you dont take the necessary care after surgery then this can jeopardize your recovery. Preparing yourself both physically & mentally before surgery is important as is a good after care plan, this should involve your family as well. We need to give ourselves time to heal after such invasive surgery.
It also makes a difference if you have a "complex" case or a straight forward one (i.e. TC, PTC, syrinx etc..). But I think the bottom line is there is still a lot of unknowns about CM and not a lot of large scale research.
Hi...and to throw in my 2 cents worth...in addition to what Steph and Ray mentioned...each chiarian will have a diff result as we all respond to meds diff, treatments...even the surgery.One factor Seth sis not mention is Ehlers-Danlos...those with it tend to heal much slower than a "normal" rate....and it can take up to 2 yrs "normally" for nerves to heal....so u do have to have patience and go about things slower.....
The best thing u can do for urself is research so u r well informed and locate a dr that is a true chiari specialist in that his practice revolves around chiari.
I am just wondering if the symptoms I have are from my CM or something else. I'm also insulin dep diabetic for 33 yrs. Very well controlled with no problems though. I have a lot of muscle pain in my forearms and hands. I've had carpal tunnel surgery on R hand and I have ct in my L hand but not bad enough for surgery. My muscles hurt so terribly when I get up in the mornings I just want to cry sometimes. My calves hurt a lot of times too. No reason why. They just do. I take several meds for chronic pain. My right arm and shoulder have given me so much grief over the past 20 years I can't even begin to describe it. It brings me to my knees. It comes in waves and I can tell when its coming. I use to have migraines and my rheumatologist thinks that pain has just re-routed itself to my shoulder now. I'm trying a migraine med, Topomax (topamax), to see if it helps. I've been on it 2 mos. now and I do think it's helping. The pain is less frequent. I do know that. I just wonder if other chiarians are going thru the same things I am going thru. I'll have 3 or 4 really great days and then BOOM here come the bad ones. The first one will be fatigue and foginess with pain around a 5 or 6 (on scale of 1-10) then over the next 2 days it progresses into horrible pain and withdrawal/depression etc. and the "biting the lip to get thru the day" look. I am married to a wonderful man who owns his own insurance business which I help him with and I have a beautiful, energetic, funny, active 15 yr. old daughter whom I feel so guilty about if I neglect. Im sure you other mothers and wives out there know what I mean. Please let me know what your lives are like on a daily basis where your CM is involved. I'd really appreciate it.
Have a great afternoon!
Well the one thing that jumped out at me was the fact u had surgery doe carpal tunnel....I had surgery back in 2000 for tarsel tunnel and a few yrs ago I found it was not tarsel tunnel as I was informed but chiari causing the issues...it was a false positive on the testing the dr had done......it was an EMG test that revealed the false positive.
I did not find a med/drug that helped with out side effects that required more meds...so I do without...I try to take as little tyleol like meds as there r side effects from them too.
And yes, the symptoms cycle....we can have a few good days and then u land on ur bum....also, if when u do feel good , if u do too much, u can make those good days a lot shorter.
It is diff to know which symptoms r from which condition....but, in time we begin to hear what our bodies r saying and at least we know what we have to avoid : )
well I just found out I have chiari malformation and sprinx....I am very scared...My doc said my condition is not bad but my pain also comes and goes,....my hand and wrist feels like it is carpal tanal....I have one daughter and am not sure if I want the surgery....my doc said that he think if I don't get the surgery now that I will definitely need it before this year is up....
B4 u make a decision to not have surgery, make sure u know ALL the facts as to how ur Chiari is affecting ur overall health.
Since u have had a syrinx form, u have a CSF obstruction....many of us have surgery to help prevent the onset of a syrinx...left untreated a syrinx can continue to grow and compress the spinal cord and brain stem....and can lead to perm nerve damage.
Look into a visit with a true Chiari specialist....get some other opinions...
AND rule out ALL related conditions.
May I ask what symptoms u have in addition to what u mentioned?
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