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Originally Posted by Lisa14
Hey Merlin, I can understand the need for support team. We too have good support with family, but neurologist we don't care for, he is not there for us. Thinking of changing. Its almost like he thinks Dean is lying about headaches. He wont give him any pain meds cause they cause "rebound headaches". So Dean usually suffers, until the pain gets to a 9 out of 10 I have tordol shots I can give him from our family Dr, which he hates to use. God Bless your wife cause I know how Dean is crabby when he gets a bad headache, but trust me We love you guys or we wouldn't be here helping and supporting, and sticking by you, but that's what marriage is about right? the good and the bad. Dean has a new pain tonight right under his shunt behind his ear, he is at work but says there is no swelling. I hope its not the shunt catheter. Dean too can't do much or he's in the dark room for a day or 2. We put up Halloween decorations and he was down the next day. Just cant do what he used to. Luckily he is a boss at work and has been there for 23 years and they work with him or he wouldn't be able to work. but if he has to go on any pain meds he won't be able to, works around machinery. I worry about him every day he is there. Anyway we are praying that the botox works and like you said can avoid the pain clinic. I will keep you in our prayers. Thanks merlin, it helps me to just talk about it but no one around here really understands what he is going thru.
lisa
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Hey Lisa,
Neuros can be such fun. Some are just university qualified @##$^*%^ in my opinion. 'We have a degree, we know your body better than you, we've fixed the problem, so its nothing we've done. It must be YOU!!'. This is why I've been going thru alternatives that I can do, differing ways I can manage. The other thing they came out with was that my pain was stress related, past stress, present stress AND future stress. Work stress and relationship stress were another couple.My actual surgeon asked me if I planned on suing him, which I have no plans on doing. In my view if they didn't operate, I'd be dead. The rebound effect is real and I know it, this is why I modify my medication intake, so my body doesn't become normalised to the meds. The last genius I went to see told me I was addicted to the pain meds and the rebound was why I am having pain. I know quite a bit about addiction and know the difference between head pain and rebound from experience, not a book, Good luck in finding a decent neurologist, one who will actually listen, they can be very difficult to find.
As I said previously pain is a very individual thing. I think the best advice is to 'be aware but not alarmed' I regularly get different pains. At first the wife would jump at each pain, now I wait to see what happens, if it increases then act, but not every pain needs instant attention.
I most definitely understand you finding it difficult to obtain people who may know or be in a similar situation. I too have found this a big dilemma. Lots of information on hydro, but very little specific. A large amount of info for children and hydro, but little for adults and little of specific pain.
Please do stay in contact let us know how Dean gets on after the treatment I've found sharing of experience to be very cathartic both in my own experiences and that of others. I'm often going "...PHEW, I'm not the only one..." This may sound selfish, but when you feel isolated by illness that understanding counts for HEAPS.
Merl1n