Omg thats scary to be driving & having everything go black. I can’t even imagine. I know no one improves 100% but I guess I’m hopeful lol. Its just a serious surgery I’m not sure I’m willing to take at this moment. I’ve asked neurologist will my symptoms progress & they all have something different to say. I’m a cna & its really rough on my body. I love my job but I come home in a lot of pain. Its tough choices.
Its nice to know someone else has muscle aches. I suffer from severe aches & i currently have an appointment with a musculoskeletal dr cuz my neuro says it has nothing to do with chiari. I’m tired of being in pain & I think thats what scares me the most about surgery is coming out worse.
“Its just a serious surgery I’m not sure I’m willing to take at this moment.”
Yes, it is serious. But not dealing with it could lead to more serious symptoms/outcome
And I can completely understand this, but as both Gabby and I allude to, things are more likely to progress.
“I’ve asked neurologist will my symptoms progress & they all have something different to say.”
I KNOW!!! And that is just SO frustrating. Neurologists all work on theory and they all seem to have their own theories when it comes to cause and effect. They really cannot give a definitive answer, no matter how convincing they seem. Every patient, every brain is different. How patient ‘A’'s symptoms play out compared to patient ‘B’'s can be miles apart and yet the scans can show the same.
I had a similar role (CNA) to you and it can be a very physical role and sure, here, today, you maybe able to manage, just. I was having weird sensations and odd symptoms for years, which in hindsight, were signs that there was an issue. But I was told ‘All OK’, so I just kept pushing on through. But long term I found pushing my limits was a BAD, BAD idea. This may sound really selfish BUT here goes.
You MUST prioritise for you. Not your clients, not your workplace, but for you. You can keep driving yourself to keep going, but in the long run you can end up paying for it (says someone who did exactly that and I paid for that too. Tsk)
“…my neuro says it has nothing to do with chiari…”
Grrrr. I had similar responses, 'Ohh it’s nothing to do with your head…" but to be honest, as I say, it is extremely difficult to give a definitive yes/no answer. It’s a bit like some neuros being of the opinion “If the tonsil is less than ‘X’ (length) then you won’t have symptoms…” And yet if you read through some of the posts here you will find there are members with what is considered minor chiari who are HIGHLY symptomatic.
Merl from the Modsupport Team
I also get pretty severe muscle aches & nerve pain. The fatigue is also very real. I have 2 small children it’s challenging to look after them. The constant pain has also affected my moods a lot.
My muscle pains keep me up at night. Again my neuro said chiari only causes balance issues & dizziness & headaches. I’m looking at her like have you not done your research. another fear i have is one of my children having this. I would never wish this on anyone. Does anyone have occipital neuralgia with chiari. I have heard they go hand in hand. Bronwen, do you have anyone to help with your children. I understand how it is to be so fatigued you can’t even get out of bed, as much as you would like to your body won’t allow it. It sux!!!
Hi there, I am sorry you are having such a difficult time, I also didn’t like my first neurosurgeon that’s why I have been looking for another one. I am very fortunate to have an amazing support system, my husband is amazing and so are my parents who fortunately live close to us, we also have a nanny that comes in a few days a week to help with the house work and the kids. I also said to my husband we need to be mindful for our children having Chiari, thankfully so far so good. I know mine was set on from lots of neck trauma over the years.
I’m glad you have an amazing support system. I’m not so lucky. My husband gets frustrated & my kids get upset. I pray everyday that my kids don’t end up with this. Its no fun!! I’m lucky to have another rare condition as well that none of my kids got & no one in the family has had to our knowledge so that leaves lucky me lol.
Oh my gosh, I am sorry you are having such a difficult time! I pray that your symptoms are eased and that your husband and family are patient, gentle and kind with you. Wishing you all the best!