Guest guest Posted March 13, 2011 Report Share Posted March 13, 2011 Please visit my blog for TCS and post your story about how living with this disease has impacted your life and the lives of those you care about. I feel it is important to reach out to others so we don't feel alone. So many times I hear, we just don't see this in adults since most of the time it is caught in childhood. I feel we need to connect with each other and offer support and that is what I want this blog to be about. http://beegeelover.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2011 Report Share Posted March 13, 2011 *,* *I am in the process of reading your blog ( great idea) but I was wondering how old are you now?* ** * * On Sun, Mar 13, 2011 at 1:06 PM, pfischer59 wrote: > > > Please visit my blog for TCS and post your story about how living with this > disease has impacted your life and the lives of those you care about. I feel > it is important to reach out to others so we don't feel alone. So many times > I hear, we just don't see this in adults since most of the time it is caught > in childhood. I feel we need to connect with each other and offer support > and that is what I want this blog to be about. > > > > http://beegeelover.blogspot.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2011 Report Share Posted March 14, 2011 I changed my name to on the blog, glad you brought that to my attention. Thanks. To: tetheredspinalcord From: kmoulton@... Date: Sun, 13 Mar 2011 18:19:42 -0400 Subject: Re: Blog Makes sense - thanks! Kathy Blog > > Please visit my blog for TCS and post your story about how living with > this disease has impacted your life and the lives of those you care about. > I feel it is important to reach out to others so we don't feel alone. So > many times I hear, we just don't see this in adults since most of the time > it is caught in childhood. I feel we need to connect with each other and > offer support and that is what I want this blog to be about. > > > > http://beegeelover.blogspot.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2011 Report Share Posted March 14, 2011 Sorry - hope it didn't cause any problem because changing your name to was not the goal of my post to you - I was wondering who Ann was and if she was a member of the list. Kathy Blog >> >> Please visit my blog for TCS and post your story about how living with >> this disease has impacted your life and the lives of those you care >> about. >> I feel it is important to reach out to others so we don't feel alone. So >> many times I hear, we just don't see this in adults since most of the >> time >> it is caught in childhood. I feel we need to connect with each other and >> offer support and that is what I want this blog to be about. >> >> >> >> http://beegeelover.blogspot.com >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2011 Report Share Posted March 14, 2011 Kellie, Shands is a great hospital, but is he a pediatric neurosurgeon? If not, I would get another opinion from a pedi neurosurgeon. My first surgery was done by a neurosurgeon that I think is very talented (he removed my friend's brain tumor after Emory told her it was inoperable, and she had no neuro deficits after surgery). He had experience with TC (he had done a whopping 12 of the surgeries before) and did a residency in PA with some of the SB docs there. He told me I was lucky to find him b/c most adult neurosurgeons have no experience dealing with this. He had me convinced that he knew what he was doing. I actually think he did a good job - I didn't have any deficits post-op and was walking the following morning, but he used a bovine pericardium graft for my dura, and my body reacted to it and attacked it with scar tissue causing not only a retether, but also arachnoiditis. My second surgery was done by a pedi neurosurgeon (now chief of pedi neurosurgery at a different hospital) and he removed the dural graft. Perhaps if the surgery had been done by a pedi neurosurgeon to begin with, the dural graft wouldnt' have been necessary (it was not needed and removed) and I wouldn't have had the retether or arachnoiditis. Jenn > > > Hi Pat, > > I'm having my surgery done by Dr. at Shands in Gainesville. > > Kellie > > > > > > > > > > Please visit my blog for TCS and post your story about how living with > this > > disease has impacted your life and the lives of those you care about. I > feel > > it is important to reach out to others so we don't feel alone. So many > times > > I hear, we just don't see this in adults since most of the time it is > caught > > in childhood. I feel we need to connect with each other and offer support > > and that is what I want this blog to be about. > > > > > > > > http://beegeelover.blogspot.com > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2011 Report Share Posted March 14, 2011 It was no problem and I was glad you brought it to my attention as I am sure others on here would wonder the same thing. It is crazy when you are called two different names. I go by at work and Ann at home, can be confusing at times, LOL. To: tetheredspinalcord From: kmoulton@... Date: Sun, 13 Mar 2011 22:17:32 -0400 Subject: Re: Blog Sorry - hope it didn't cause any problem because changing your name to was not the goal of my post to you - I was wondering who Ann was and if she was a member of the list. Kathy Blog >> >> Please visit my blog for TCS and post your story about how living with >> this disease has impacted your life and the lives of those you care >> about. >> I feel it is important to reach out to others so we don't feel alone. So >> many times I hear, we just don't see this in adults since most of the >> time >> it is caught in childhood. I feel we need to connect with each other and >> offer support and that is what I want this blog to be about. >> >> >> >> http://beegeelover.blogspot.com >> >> Quote Link to comment Share on other sites More sharing options...
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