Dear Ellen,How are you feeling,any news? I have sad news.interstim tx. terminated,just talked to team. Must be removed within a couple of days. Bladder responded wonderfully,but set off Dystonic reactions in face,tongue,mouth and then throughout body. Was admitted to ER onSun.,was givenBenedryl IVpush had immed.reaction,thought that was the end. No family around but when you die you die alone. Medtronic people have never seen such a connection above the waist,but then they have never heard of dystonia!! It was nice to exper. a normal bladder for a day and a half. Oh well, I gave it my all. Hope surgery for removal goes without major prob. While in ER found out K level low. Don't know why. Take care.Kathleen
HI Ellen,Hope today is one of your better ones,I'm home and interstim device already seems to be working. Even with a 50% improv.with symptoms device will be perm. installed. Will be monitor. by Medtronic rep.,already tired of measuring and recording ouput. But the best thing ,I was respected by all of OR staff and treated gentley. Even allow.me to use ear plugs. Turned out to be a life saver because coming out of anesthesia they had a fire drill which set off a reaction. Used ankle for B/P cuff which could of set of reaction in Lft shoulder. Didn't have to explain till I was cyanotic,haha. I am a Brain tissue donor, but the anesthesiologist never heard of it before. Had copy of document with me ect. but was surp. I go back in two weeks to perm. install. I am not as fearful as I was yesterday but then again all it takes is one bad nurse or Dr. when you have no say or control and live in constant fear of setting off Dystonic reactions. Hope you find somthing out soon with these new Drs. Take care. Kathleen
Having stimulater inserted on a trial biasis tomorrow am.for bladder. Have warned pre anesthesia and Urologist knows what can happen after 3 hours of Dystonic Reactions in his office during testing. Bringing duaghter as an advocate but not sure what she fully comprehends. Really scared, but now have to leave in God's hands. Take care of yourself and continue to educ. others. Kathleen W.
HI Ellen, Lisa has told me that you are an excellent resource for Dystonia. Must say that I've had a rough few days. Heat, humidity, other issues. Does anyone else notice that it is affected by heat and humidity and extreme cold, and does anyone else get migraines from it? I have Segawa's.
Dear Ellen,Just looked up Lovenox, indicated for tx of deep vein thrombosis which may lead to pulmonary embolism. Also indic. for prophylaxis of unstable angina with ischemia, prob. pulm.embolism. Only major side effect ,major bleeding episodes.could not find neural effects unless given intraspinal. Sounds like you don't have much of a choice. God Bless ,Canary3
Hi Ellen,
Thank you for welcoming me, I would love to share your Migrane knowledge, as I suffer from Migranes too. I also have IH... it used to be called Pseudo Tumor Cerebri. Great to know there are people out there with whom share. I am still figuring this site out.
Actually Ellen , I fallowed you here from a twitters site. Thank for your interest , I hope that I will be able to bring some positive insights into the group I have chosen.
thanks Ellen for visiting the encourement.My dystonia is here hiding lol. It was hiding so well i had a broken foot for two and a half months , a stress fracter i guess they are hard to see , it was only broke for a week or so before the xray . The one two months later show it heeling well thoe . it was to late to put a cast on it thoe . It is the foot with the dystonia it did hurt alot , the swelling of it was seeming more worrisome to me thoe i thougt oh geeshe what now.I am not to have my injections for another30 days , so trying to stay with good humor and positive ( sure can be frustaing at times thoe) so that the dystonia cant get the best of me !! I think i have two sites here i got mixed up sorry Ellen, i do get confused sometimes thoe : ) makes life intresting and new all the time . ( it can be a pib thoe ) i some day will be able to visit your twitter : ) i think i can i think i can!Sigh i know never give up and i shall not.My neoros didnt give up to figure out what was wrong , i was fortuate to not have to go years and years undiagnosed with dystonia , but it is not fun to get it boom all at one time either but i am grateful for them thoe.
Hi Ellen, I just wanted to stop in while I was signed in and say hello!! How are you doing? I hope things are a little better for you, since last time I heard from you. I see all of your tweets and I think to myself, well she is a lot stronger than I am!! When I am MIA online, I am NOT doing well, and have no desire to get on here, well I desire it I just Can't! I thank you for all of the great ;links you share, and information too = )))
Sending you huggs & Much PEACE
Jenn
HI Ellen,
YOur very verry savvay on the compter i am so impressed. I have never had a intrest to work on the compter until the year i think it was 2006 and it was for to research, then i joined i chatroom. I a quesiton , I do not even know what a thread is. I attended the webinar on the twitter event i tried to take notes but i have so much of a congnitive dificulties to know what to do , i have no one here to help me . I had been in a stroke rehab threpepy for 6 months at the begining to learn to cross the midline and now i am in PT to learn proper gait and to learn how to not to fall over ( boy what a jouneney) it is to help with cognitive to . I have had people notice improvements . It has been 4 and half years and it seem i am stuck in a time warp.to explain a closed head injury to any one would take a book to write it .THe pain ect..... and then to get a double wammy of posttrauma dystonia on top of it. oh geesh i am side tracked .. ok i needed to know what was a thread please? lol humor does help, it is hard to keep a false smile at times thoe. thank you Ellen for being my friend.
ellen, i did make the webinar today however it was beyond my puter expertise...too tech for me, but will try out some of his suggestions--when i'm feeling better [AND if i can remember--lots of info]. hope you made it...thot i saw your horse display pic.
also, thanks for commenting back reg meds, etc. [sorry that post was so long!]
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Have you or do you know anything about the Ketamine Coma? Ike
Thank you for welcoming me, I would love to share your Migrane knowledge, as I suffer from Migranes too. I also have IH... it used to be called Pseudo Tumor Cerebri. Great to know there are people out there with whom share. I am still figuring this site out.
I am interested specifically in inflammatory bowel disease and of course what is going on regarding health care reform!
Enzo
Thanks for you kind comment and welcome
Barbara
Sending you huggs & Much PEACE
Jenn
YOur very verry savvay on the compter i am so impressed. I have never had a intrest to work on the compter until the year i think it was 2006 and it was for to research, then i joined i chatroom. I a quesiton , I do not even know what a thread is. I attended the webinar on the twitter event i tried to take notes but i have so much of a congnitive dificulties to know what to do , i have no one here to help me . I had been in a stroke rehab threpepy for 6 months at the begining to learn to cross the midline and now i am in PT to learn proper gait and to learn how to not to fall over ( boy what a jouneney) it is to help with cognitive to . I have had people notice improvements . It has been 4 and half years and it seem i am stuck in a time warp.to explain a closed head injury to any one would take a book to write it .THe pain ect..... and then to get a double wammy of posttrauma dystonia on top of it. oh geesh i am side tracked .. ok i needed to know what was a thread please? lol humor does help, it is hard to keep a false smile at times thoe. thank you Ellen for being my friend.
Good luck with the transition....I am sure in a few months you will be wondering why you ever thought this was stressful ;)
also, thanks for commenting back reg meds, etc. [sorry that post was so long!]
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