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