Guest guest Posted December 27, 2011 Report Share Posted December 27, 2011 I will no longer be using this email for my primary use. Please send all correspondence to my new email address of: jozann@... Thank you!! On Dec 27, 2011, at 4:51 AM, tetheredspinalcord wrote: > Tethered Spinal Cord Syndrome > Messages In This Digest (1 Message) > 1. > Re: Digest Number 3793 From: Jozann Borenstein > View All Topics | Create New Topic > Message > 1. > Re: Digest Number 3793 > Posted by: " Jozann Borenstein " jozann18@... jozann18 > Mon Dec 26, 2011 11:39 am (PST) > > > I will no longer be using this email for my primary use. Please send all correspondence to my new email address of: > > jozann@... > > Thank you!! > > On Dec 26, 2011, at 4:43 AM, tetheredspinalcord wrote: > > > Tethered Spinal Cord Syndrome > > Messages In This Digest (1 Message) > > 1. > > Seizure Activity From: Livvie > > View All Topics | Create New Topic > > Message > > 1. > > Seizure Activity > > Posted by: " Livvie " livviep62@... livviep62 > > Sun Dec 25, 2011 11:51 pm (PST) > > > > > > It's been a while since I posted, but find us in a very frustrating and scary situation. I will do my best to explain. > > My 29 year old daughter had her 5th de-tethering surgery last February. Since that time things have gone from bad to worse. She has lost so much function, but by far the most debilitating thing is these " spasms " that she has. They started not long after surgery, and are getting worse. In the beginning it was the rhythmic like movement that while was not particularly painful, being someone with chronic pain, she would become tired and her pain would increase. When they first began she was put on Klonopin, and 5mg of valium as needed. They stopped for a while. > > They have over the past month started coming back. She would be transported to the ED, get some IV valium or Atavan, and some pain meds and be good as new. Then this past Wednesday, she had a seizure, Duke won't call it a seizure, but I saw it. Drooling, tongue biting, thrashing, unresponsive...seizure. We were in the car so I drove her to the Ed. They got her stable, sent us on our way, 4 hours later we were right back in the ED. They gave her the usual cocktail, loaded her with Dilantin, and gave us a referral to Neurology, home we went. Four hours later we were right back in there. This time they loaded us up and sent us to Duke. The ED Dr. said he thought it would be dangerous to keep her local when there would be no Neurologist on call. > > Duke did an EEG, and said it was not seizures. I learned while we were there that her Primary Care felt that she didn't need to be on the Klonopin and Valium, he took the Valium completely, and reduced the Klonopin. > > I couldn't believe that she allowed that to happen. When all this first started they said it could be the Effexor and took her off of it. So after the spasms stopped and she had been off of the Effexor for a while, I told her to try titrating off of the Klonopin and see what happened. Well she ended up back in the ED. Obviously the Klonopin was controlling them. She started it back and was fine until now. My question is....have any of you ever experienced anything like this before? We go in the ED and all they can say is....WOW....one minute it's a seizure and the next it's this uncontrollable twitching. Which she says feels like someone squeezing her spine. We are desperate any ideas you may have would be so much appreciated. I really don't know what to do to help her. > > Thanks, > > Livvie > > > > Back to top > > Reply to sender | Reply to group | Reply via web post > > Messages in this topic (1) > > > > RECENT ACTIVITY > > > > Visit Your Group > > Yahoo! Health > > Early Detection > > Know the symptoms > > of breast cancer. > > ---------- > > > > > Share Photos > > Put your favorite > > photos and > > more online. > > ---------- > > > > > Meditation and > > Lovingkindness > > A Yahoo! Group > > to share and learn. > > ---------- > > > > > Need to Reply? > > Click one of the " Reply " links to respond to a specific message in the Daily Digest. > > Create New Topic | Visit Your Group on the Web > > Messages | Polls > > NOT MEDICAL ADVICE. We Are Not Doctors. > > Need help with list?Email Darlene: darlene_self@... or > > : hollygolightly1916@... > > > > MARKETPLACE > > Stay on top of your group activity without leaving the page you're on - Get the Yahoo! Toolbar now. > > ---------- > > > > > ---------- > > > > > Change settings via the Web (Yahoo! ID required) > > Change settings via email: Switch delivery to Individual | Switch format to Traditional > > Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe > > ---------- > > > > > Quote Link to comment Share on other sites More sharing options...
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