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Post by sibemom on Nov 9, 2006 7:34:23 GMT -5
Well after almost a year since my accident FINALLY there is a team approach to my care plan. I had my appointment yesterday and still I was a world of hurt. I will always be greatful for this doctor because from the beggining he stuck with it to try and find WHY, HOW, and WHAT could be done to help me. As everyone knows I am an very ANTI MEDICATION person because it seems no matter what they give me I have some weird reaction or strange side effects, but now I do have to just be patient and try and let the meds work. He confirmed that YES I DO HAVE RSD, not a fun thing to have but treatable, even though it will always give me some degree of chronic pain it can be managed, and NO NOT WITH NARCOTICS EITHER. Because of teh scaring in my brain he has to be very careful what he gives me because some meds have a potential to cause seizures which I am already haveing so the plan is to use drugs that stop the nerves from sending pain messages to the brain and to controll the seizures. The drug he is starting me on in very low doses is Lyrica, it scares me a little but if it stops the pain and keeps the SPELLS away then that is the route I have to take. He is combining it with Zoloft because that to has some pain stopping properties. Lidoderm patches will be added in at a later date and placed right above the nerve chain on my spine and although just a bandaid of sorts they can and will provide relief. Capsaicin cream is another topical I can use, IT REALLY BURNS but it does help. I am so angery that I have to be made to go through this but I do so I will deal with it. I have another EEG on Friday to check brain waves etc... but that is just for protacol because with the type of seizures I have they do not register on that test but I guess it helps them make a "CLINICAL COROLATION" HEY THAT WAS BIG WORD FOR ME I am finding I can write again and do not have to search for the words so hard anymore, I just do not absorb anything new that they might try to teach me AND THAT SUCKS TOO I have another hearing test coming up because of the tinitus, and another visit to the opthomologist, all of course kind of useless but again documentation is needed for the loses. I will probably be loosing my right to drive at some future date or they just might limit me to a certain distance AND THAT WILL SUCK TOO I have not started the Lyrica yet have to wait till after teh EEG. So now I do have a TEAM of docs working on this along with my PT, thank goodness you would think that almost a year post accident things would be getting better for awhile they were but now they went right back to almost being worse than in the beggining. SO THAT IS THE SCOOP KEEP GOOD THOUGTS FOR ME
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Post by Dom on Nov 9, 2006 8:45:57 GMT -5
Good the hear!! At the very least, they have a plan now. I hope it works out for you. We will keep you in our prayers.
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Post by sibemom on Nov 9, 2006 9:00:19 GMT -5
Thanks Dom, OH AND BY THE WAY my little Brody has gotten rather good at detecting when a spell might be coming on Now I do not have the kind of seizure where I fall on the floor, foaming and shaking NO not nearly like that. What happens to me is I start to twitch in my left hand it starts with the thumb then works up to the shoulder and then I get a blank stare kinda zoning in a way. Well he has noticed when my thumb starts to shake and imediatly will come EVEN FROM ACROSS THE ROOM and start licking my hand and nudging it. SO HECK YEAH he is coming along nicely When he does that sometimes it inturupts the cycle and it will stop, so that is great just incase this med causes a bad reaction for me. The doc is very pleased that Brody is that in tune with me because he did say this will help me down the road
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Post by Dom on Nov 9, 2006 14:40:39 GMT -5
It always amazes me how animals can be that in tune with someones physical or emotional state. You are lucky to have a dog that is so aware of what is going on with you. It is great that he can snap you out of some of the seizures before they get too bad. That has to be comforting. Nice going Brody!! So when are you going to get him his therapy dog vest? The only thing Sadie can sense from the next room is when I am about to open a can of tuna or mackerel.
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Post by Nicole on Nov 9, 2006 17:48:26 GMT -5
Wow Ann. You poor thing. I feel so bad for you!! I am glad though that the doctors have a plan and that you are comfortable with your care. That is so important!! I am sending get well thoughts your way. And what a good boy Brody is.
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Post by sibemom on Nov 10, 2006 7:34:02 GMT -5
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Post by Richard on Nov 10, 2006 7:49:42 GMT -5
Ann, Well, as others say, you've got a team working with you now with a game plan that makes sense - that could be the development you needed. Glad your PT has the "touch" to make you feel better cuz that is what is most important right now. I know it's hard but do try to keep the funk to a minimum and focus on the goals ahead: pain free, meds free and getting control of your life back. You're going to get through this and with the help of your "team" and all us supporting cast members, it's just a matter of time. I'll ask about the glue in your hair later!!
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Post by Dom on Nov 10, 2006 13:08:42 GMT -5
I joined a couple of on line support groups that deal with my problems and you know those people are very helpful so off to comb my hair so they can stick that GLUE IN IT I hate that glue. It is ALMOST as bad as sand. You will continue find the stuff on you even a week later.
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Post by sibemom on Nov 13, 2006 6:49:38 GMT -5
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Post by Richard on Nov 15, 2006 11:36:32 GMT -5
Any updates Ann?
How ya feeling today?
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Post by sibemom on Nov 16, 2006 8:23:11 GMT -5
Well the pain is backed off a bit but NO I am not taking that drug anymore I couldn't because I have a child to take care of and that would not be possiable on that drug. I have to go Friday for a CAT Scan of my Right Kidney because the ultrasound showed something. They think there was some bruising or damage done by the impact, NICE almost a year later and they finally figure that out This is the fault of the first Neurologist who did not follow through with the radiologists recomendation from back in January If I had more energy I think I would sue her to because that was SO IRRISPONSABLE and then she tried to blame my attending, which is was not her fault at all, because she is not the one who ordered the MRI and was never informed about the suspicious thing in my kidney, so how could that be her fault. This is the reason I am signing release forms to have all reports sent to me also, that way I can make sure they follow through with recomendations. I am just so damn tired of all this. I hope that the THING in my kidney is nothing more than a bit of scaring because I do not need anymore on my plate right now.
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Post by Richard on Nov 18, 2006 17:10:38 GMT -5
Oh my, I hope it is nothing serious Ann. Your situation has[/b] to get better soon - at least that is what I'm praying for!!
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