Hi. I’m poppkorn! Just introducing myself hoping for support
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Hey Patti,
Welcome to Ben’s Friends
Being diagnosed with multiple conditions can make the whole process of managing a brain injury so much more difficult. It can also make obtaining a ‘true’ diagnosis a real minefield. Some medicos can be quick to blame symptoms on, for example Chiari, but not take into consideration Lyme’s as a contributing factor, when the whole of ‘you’ (and your conditions) needs to be considered. Neuro’s have a large amount of info regarding the brain, but may have very little info in regard to Lyme’s.
I’m in Australia and here we have General Practitioners (GP, the same as your PCP), then we have physicians, then we have consultant specialist (Neurologists), then we have surgical specialist (Neurosurgeons). GP’s are good for general medical needs and if they know which specialist you may need, they can refer you directly to that specialisation, cutting out the physician altogether. The physician’s role is like an investigator, to investigate the whole ‘You’. They can make referrals just like a GP, but they can collate the differing reports from differing specialisations to then make a more holistic diagnosis. Also physicians can speak to specialists as dr to dr and the information they provide can be more readily accepted, where as sometimes when we provide the same information ourselves it can be taken as hearsay, using a physician can assist in eliminating this ‘hearsay’ effect.
Some specialist can be excellent in their chosen field, but outside of their field, their knowledge may not be as comprehensive. For someone with complex needs, such as yourself, I’d suggest finding a medical advocate or a physician to fully investigate your individual case and situation. Trying to do it all on your own, going and seeing individual dr’s for individual concerns can be a costly waste of time, especially when those individual dr’s often they concentrate solely on their specialty but never take the whole ‘You’ into consideration.
But I must say being misdiagnosed is not unusual when it comes to complex needs, in fact I’d say it’s rather more common than many people realise. Please let us know how things go along the way.
Hope it helps
Merl
Hello to you! I am a tbi survivor, I’ve had 3 haemorrhages, first one was in 20001 and then recently in September 2020 and then brain surgery November 2021. I’m trying to go back to work on Tuesday, I’m a higher level teaching assistant…it’s a big step but I’m being positive despite suffering anxiety… I will support you as much as I can! So what’s your story? Oh by the way I’m in the UK! Sending virtual hugsxxxx
Hey Sian,
3 haemorrhages? that’s not good. Did you need surgery for the first 2? You say you had neurosurgery in November 2021 (I hope you mean November 2020 or are you scheduled for surgery later this year).
Some neurosurgeries can be done via the vascular system with minimal disruption of the surrounding tissues and less recovery time for most people, which is much preferred if at all possible, rather than a full craniotomy.
My recovery from the craniotomy has taken a long, long time to get over. My symptoms fluctuate something terrible and the more I push myself, the worse I am. I can completely understand you wanting to get back to work and I get to normal. I wanted to do exactly the same, but I pushed myself to hard, to soon doing myself a major injury. Please listen to your body, when it tells you to stop, please stop. The signs maybe subtle, but push it too much and the consequences can be dire.
Merl
Wow so much to consider. So hard to find that one place to go that treats you as a whole for all your disabilities. Sometimes it feels like being stuck in cement
Thank you Meri. There is so much to think about and take care of. I feel so overwhelmed:(.
I won’t lie to you Poppkorn… …It can be overwhelming. Let’s face it our whole lives have been reset. That would overwhelming anybody. One of the worst things for me to do is to simply sit and think about it all.
It can drive me bonkers. The ‘weight’ of it ALL is HUGE. I need to break it down into manageable steps. I need to acknowledge there’s somethings I can’t control. I have the injury, I can’t change that, so I “try” to concentrate and the things I can control. And the only thing I really can control is me.
If I need rest, that’s up to me.
If I need medication, that’s up to me.
If I need to control my level of activity, that’s up to me.
I need to have some sort of control over these 3 ‘little’ things before I go anywhere near the bigger picture.
Merl
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