Chiari Online Support Group

TBI help!

So I had cranial decompression/c1 vertebrae removed (top of spine) in 2016 and it did not go well I had meningitis,csf leaks,infection managed with a lumbar drain,steriods and iv antibiotics it been 2 and half years already and im litrally loosing my mind im trying so hard to get my shit together and Im anxious ALL THE TIME! and hostile explosive angry all I can think of is a TBI.I feel the doctors have let me slip through the cracks I got refered to a phycologist but not a nuerophycologyst I am really not ok I cant seem to get it under control I just want to feel better but it seems nothing I do seems to help.I waited 3months to see a phycologist and I know I need some sort of medication I just don’t know what to do in the mean time its litrally! driving me crazy as Im normally a very patient kind person but now im moody/explosive anxious I cant sleep at night either because my thoughts are obsessive.PLEASE if anyone has any experience dealing with this sort of thing help!!!.I don’t know what else I can do.

I can fully empathise with your situation. I’ve had a few neurosurgeries (6) so far. The medical fraternity’s view was “Well, they’ve operated, they fixed” but things were far from fixed. I too was sent to a psychologist and was told “Don’t worry, it’s all in your head” (as if I didn’t know that already) but they meant psychologically and not physically. If it was NOT physically they wouldn’t have operated in the first place. For many years I’d studied to obtain a qualification, I had a job using my qualification. I’ve had to resign from my job and my qualification certificate looks nice on the wall but I can no longer work, so that’s now useless. This has been an almighty blow to me self-esteem, my self worth and my whole outlook on life. My pain levels fluctuate MASSIVELY, so I can’t plan and as for frustration, others can’t see why I’m so frustrated. The medicos have tried me on all sorts of meds from high dose opiates to heart meds to psych drugs. I’m either so spaced out I can’t think straight or in so much discomfort I can’t think of anything but pain. There’s no nice way to put it, Management of this is a B$%#@ and it is something that only people who have never been here can ever understand or even comprehend. Nobody and I mean NOBODY would ever choose to be in this position, so for others to make a judgement that we choose to be here is nothing short of insulting. The pain, the lack of sleep, the lack of understanding etc Then they have the gaul to ask “so why are you moody all the time…” I want to say “Well, here, you have this, now see how you would deal with it…” This ain’t no simple walk in the park, this is our life now and we choose to be here? WHO THE HELL WOULD CHOOSE THIS??? Not me that’s for damn sure. GGRRrrrrrrrrrrr . Sorry. I need to calm down a bit now.

Look, I don’t have all the answers, not at all. In my opinion (and it is only my opinion) if you have access now to the drugs, use them, for your own sanity, then when you can get an appointment with a psychologist, do so. I am certainly not saying that a psych will have all the answers (they didn’t for me) but if you can talk things over with someone qualified, it may assist you to move on. I do hope they can give you some of the assistance you need, but in the meantime use every resource available to you for your own benefit. And that includes us, we understand and our understanding doesn’t come from a medical book, it comes from a lived experience. This is not easy and anyone who tells you it is has NEVER been here. Come talk to us.

Merl from Moderator Support

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So sorry to read about your hardship.

I am not saying what they did for me will solve all your problems, but maybe you do find some encouragement and even perhaps some direction for your doctor to think about.

I am 7 years post-op. Diagnosed about 40 years ago. Thanks to a neurosurgeon I met about 12 years ago my pain was brought under control and I could stop using pain meds as such. instead he put me on meds to balance brain chemicals which automatically started to control pain.

Also did a rhyzotomy(stunning/blocking a nerve in the neck using radio frequency) which controlled my pain for 2 years before I had to go back for another one. This time it only lasted a year after which we finally decided to operate.

All your anger and explosiveness is totally normal within your situation. A phsycologist explained to me our brain is under trauma all the time which messes with the brain chemicals. Being under pain constantly breaks you down phsycologically and physically. Pain meds does not always address this type of pain as it is nerve pain, not muscle pain. Further pain meds and anti-inflamatories mess up your kidneys as in my case. Before I got to this neuro I used to swallow hands full of pain pills. A further problem we experience is also that when we lie down to sleep we have to watch which side of the head we lie on. Lying on the back of the head adds pressure which then causes you to battle to fall asleep. I used to have terrible heart palputations when I got into bed and lay down my head.

My doctor put me on Remmeron to balance chemicals and control pain. Brilliant. Then also on pills to manage my heart palputations and Lamicton also to help with the pain and balance issues. These are the only pills I need. I do at times take homeopathic little nuggets to combat nausea. My pain is under control, so too my phsycological issues. I do still have to be carefull what I do. I do still have days where I do not feel well but through managing what I do and how I do things it is totally livible as it does not go over into that maddening pain.
I hope this is a bit of an encouragement as there is help and hope but you need a doctor who will address your problems without having an attitude about it.

Further to give you hope, I am a teacher who for many years had to stop teaching. But I am teaching again for the past 14 years. I started working for 5 days a week teaching fulltime at a state school for 8 years, but now work three days a week at a private school. I find a 5 day work week difficult to manage. So yes, if they can get the problems sorted out and under control you might one day be able also to start again part time.

Rest often. Seek quiet environments. My neuro said to me take a bath by candle light. See if conservative massage of back and shoulders, not neck, gives you relief etc.

All the best.
Please keep us updated.

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Omg! the nausea!!! that happens everyday! when I wake up its so depressing! Im hoping to get this all under control at least because I start uni in 2 months for primary education.It makes me so sad that this is happening!

Hey chick,
I believe when we are diagnosed we go through a grieving process. The life we had is forever changed and for a while I had what I call the “Poor me’s” and I could have easily got stuck there. The life I had had been forever altered and not by any actions of my own. I kept rolling all the negatives over and over in my head and I needed a change of focus.
We have been to a (Excuse my language) a bloody scary place that 90% of the population have no idea exists. Initially the whole situation rocked me to my core “how will I ever survive?” but I did. I must admit I didn’t come out the other side of it in a perfect state, in fact not at all, but then I could be dead, so at least I came out the other side. I have to say that fear I had is normal. We, who have been there, can sit down with those ‘Poor Me’s’ forever OR we can use those experiences to assist others on this god damn awful journey. As I say, none of us would take this route by choice, but for the individuals just starting this journey it can seem that their world has collapsed. We can show them that our world has changed and there is no denying that, but our world hasn’t collapsed. We have all picked up new skills by managing our own situations and we can pass that knowledge and those skills on to others for the betterment of everybody.
We all had life plans and mine have been obliterated. Now I need to change my life plan to meet my abilities. Look, I may make this sound simple or easy… …IT AIN’T, not at all and it has been the most confronting, ugly and painful thing to deal with. But I have no choice. I either stagnate or use my skills and knowledge elsewhere. Don’t get me wrong here, I still have those days when I get angry, frustrated, confused and down on myself, but I have to move on.
I am not going to tell you things will get better because for me they haven’t. I believe I have learnt to accept my new limitations, be grudgingly. I must admit at times I still do push my limits but in doing so I know I’m doing the best I can and that’s as much as I can do.
Merl from Moderator Support

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