Hi everyone (mainly a thought for site administrators)
Hope everyone is doing as well as can be
I had an idea that may or may not be a good one that’s been on my mind for months
Long post sorry!
There is quite a bit of info out there for avm symptoms prior to treatment but not post surgery, post embolisation, everyone seems to wonder "is this normal " does anyone else have this symptom AFTER surgery
And they are ofyen worrying symptoms and seems like most ask their nuero team and get answers like no its fixed… that must be something else which is frustrating to say the least
I know many others that had a similar experience and I am going thru it now (well almost a year)
Obviously people will have individual questions but would a topic on “what to possibly expect after surgery” be a valid one for people to be able to read
obviously everyone is different and recovery is different and symptoms are different for everyone but I think it would be a massive benefit to people to know that there are possible NEW symptoms after surgery which may be “normal” or common but Neuro teams dont know them. Rather than thousands of people worrying and wondering due to lack of data out there
I’ve developed some terrible symptoms post surgery and my general doctor ran major tests expecting to find I had a virus or something serious wrong. He ran every test imaginable which was great as I never see a Dr (and he knows I’m the opposite of a hypochondriac) truely expecting to find a major issue to treat. Only for all the tests to come back 100% great
Now he said to me… because brain surgery is lagging behind more traditional bodily issues and surgery, these brain surgeons are making great skilled advances but are only just touching the tip of knowledge of the brain and overall know not much compared to other parts of the body and how to fix issues and they seem to be really lacking the knowledge of symptoms and side effects of AFTER surgery. The non life threatening but scary symptoms still
I know a lot of people are told, you’re fixed. Nothing wrong now. But have additional symptoms than prior to surgery. It’s great you’re at a lower risk of stroke or death but very scary when you have major things happen or change and you go searching for answers only to find that there is a good chance that it’s the new blood flow or brain making new pathways or new cells forming from redirected blood flow that you have never had before because it was you were possibly even born with this and so it’s new parts of brain activating
My general doctor got right into stroke survivor stories first hand and other brain stuff that he agreed he seems to see more recoveries long term and the good and bad side effects than the Neuro guys do as he sees patients long term after surgery whereas often Neuro often only see them for a few follow ups and that’s it so he has more answers and experience than Neuro with long term follow up as he is passionate also about brain stuff. He doesn’t think for a minute he has anywhere near the knowledge or skill of surgeons or radiologists but he sees patients longer term and more often than nuero teams so has some more info on non life threatening post surgery symptoms
I guess I’m trying to say you can Google post surgery symptom expectations for almost any disorder but nothing really for avms besides VERY common or life threatening warning signs
It wouldn’t be a list of everything that can happen or what to expect as we are all so so different. But people could add a timeline of what they encountered in their individual recovery and things that got better and things that possibly developed or even changed or even got worse… (but was not life threatening, just uncomfortable)
It would be helpful for a lot I think to see it yes bob or Jill had no sensitivity to light pre surgery but does after.
Would not be giving medical advice and would have the red flags of if you have these…go in for a check asap!
but users here could write what they had post surgery or even a time line of no symptoms for blah amount of time then new ones as the Brain redevelops or repairs or adjusts…
A single thread people could look to as a fort point of call without trying to search every users individual posts in the hope of finding a needle in haystack and same symptom. I think it would be super helpful
It’s just everyone I speak to here or outside has often more questions after surgery than prior. New symptoms. And it’s probably normal but very worrying often
For example, my headaches and eye aches went away for 4 months post surgery then came back with a vengeance but there’s nothing wrong. Now I have new symptoms post surgery, super sensitivity to heat, sensitive to flickering or bright lights and night time where I legitimately feel like I am going to faint, extreme extreme fatigue and other very uncomfortable stuff I won’t bother to mention atm (which blood tests reveal nothing wrong and also I’m happy and non stressed in life so it’s related to brain), I had bending over issues post surgery where I could hear wind blowing and wanted to faint for 3 months post surgery but it went away etc etc. But other new stuff has occurred since
None of this was mentioned by doctors (as they don’t have enough info at this stage) and they say it’s not related to avm. But the stories I read here, it’s obvious it’s related to avm surgery and recovery… its not a coincidence. Maybe not a threat at all, but it’s related and people should know to be able to put their mind at ease
I just had an angiogram with all clear!!! Fantastic!! Happy as!! But I feel shocking with new symptoms and i cannot do what i used to do in life and new symptoms. Things have got a lot worse in some ways and that’s fine as long as I know it’s not life threatening which I do now after follow up angiogram. Im worse with symptoms 9 months on but happy to know it’s not a new avm.
It’s great to know I’m not about to drop dead! But prior to angiogram, I was worried. Now I can relax and say well these life changing symptoms are very uncomfortable but are not life threatening and possibly common? But I don’t know if common and there’s no info out there!
What are people’s thoughts?