Confused about many things :(
Posted , 3 users are following.
Hello everybody. Since 2012 i have been diagnosed with hydromyelia from about C4 to T7 - My scans have been evaluated by 3-4 different neurosurgeons, and they are all a little blurry when asked about if i also have the chiari malformation, but their final statement is that i don't. I am still convinced that something is not right in the back of my head, since i have hard time believing that the syrinx just came by itself.
Anyway, when i read in different forums, websites and so on, i notice that almost everybody with these conditions have either been undergoing the decompression surgery or at least been offered to have it done.
None of my physicians have at any time since my diagnosis offered me surgery, they havn't even mentioned the possibility or given me an explanation of why they don't think i should have it.
Why do you think they havn't ? because they don't see it as an option because of the missing chiari malformation or because they are incompetent?
Personally i would really like to avoid a surgery because i think it is a really large and frightening intervention. My symptoms has through the years been somehow very unpredictable with very bad periods but also good periods with very few symptoms. When i have bad periods i have a very stiff back and neck, dizziness, fatigueness, mild headaches, and sometimes nausea. Also in bad periods i suffer from cognitive problems as reduced concentration, brain fog, and stuff like that.
My symptoms are pretty annoying and affects me negatively in my every day life. However, i can manage my job, take care of my daughter, and do the most of the home duties, allthough it is sometimes very tough and exhausting.
I just think that from being challenged in the every day life, to have a neurosurgeon cut my neck open with a knife and remove a bone from the base of my skull is a extremely large step to take. To have a operation like that done, one should be extremely impaired, or what do you think?.
It somehow seems that the most of you guys had the surgery, and almost see it as a "standard" procedure, which is stupid not to have done. So i am just wondering, how bad should you be to consider an operation? why havn't i been given the opportunity to have one? And is their not anyone of you which DIDN't had a surgery, and are satisfied whith NOT having it done? Should i just get the best out of my life as it is, or is it worth it to pursue an operation, risking to maybe get even worse?
Hope some of you can help in these considerings
0 likes, 2 replies
b2wc97455 thorbjorn00393
Posted
Hi there,
Reading on your post, I fully understand how confuse you are at present, let me tell you in my own experience, I first had felt just like you are, I detested the surgery, I left it too long..(caused the scare of the operation) however it did not do any favour, chiari is not disease its anatomic issue (defect in your body system) which can only be helped with surgery, I live in the UK, which we are quite tight on surgery or non surgery,,anything our NICE guidelines try to implemented ''MANAGING FIRST'' i.e provide medication, help , treatment, but if the health care professionals feel it is dangerous to leave it without surgery or more aggressive task..then they have to obey by it, health care porfesionals (I assume) all over the world...would not suggest any surgery unless it is necessary..so my suggestion to you is..DONT BE LIKE ME..listen to your specialist, they know and think best for your wellbeing..do you know how many people wanted to get operation and some specialists would not do it???, chiari is not something that you can manage by medication..if you leave it too long its only going to get worse...I finally unable to stand with the pain and became housebound..some of my nerve might be damage now (I think) as I decided the surgery 18 months after struggling..but after operation ..I just glad I have done it...and I am the lucky one..cause I have a successful surgery..drug and pain free..except my back could be in so much pain now..(here..I leave it too long) ..so if you have this chance..do it immediately..DONT LEAVE IT TOO LONG
Good Luck
j031017 thorbjorn00393
Posted
Hi
I just wanted to say I know exactly where you're coming from. From what I can gather through researching chiari, the US seems much more ready to offer decompression surgery than the UK. I was diagnosed in October 17 with chiari and possible hydromyelia but my neurologist seemed opposed to surgery. In some ways I was relieved he didn't think it necessary as it is invasive and somewhat frightening but at the same time I worry that non intervention will result in symptoms getting worse. I'm awaiting a 2nd opinion from a neurosurgeon who has a particular interest in Chiari so hopefully will get a more knowledgable opinion. A 2nd MRI has con firmed Chiari along with a syrinx, a disc bulge and haemangiomas in cervical spine.