Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Hi Dee, Thank you for your response. I'm really not sure of the term the neurologist gave my tether. I know my spine is attached to the skin around it. I have some nerve damage in my right leg. The neurologist did a needle test on my leg and I couldn't take it to put it mildly. That's when he started asking about my lower back and ordered the MRI. I am missing one to two days of work every week and my self esteem is not what it should be. I feel much better about my decision to have the surgery after hearing about your experience. I really appreciate you sharing. > > > > What other symptoms are you having, Kellie. That would be important > > perhaps in helping you make the decision. I am not familiar with the hospitals > > in Florida but perhaps someone else on the list is knowledgeable. The > > experience of your surgeon is probably more important than the hospital itself > > and never hesitate to get another opinion or two as this is a big decision. > > Did the neurologist tell you what sort of tether you have? Welcome to > > this site..great place to get info! Randee > > > > > > In a message dated 2/24/2011 8:31:46 P.M. Central Standard Time, > > redgecko97@ writes: > > > > > > > > > > Hi, > > > > I found out last last year that I have TSC. I was having lots of pain in > > my back and my right leg. My neurologist ordered an MRI and found it right > > away around the L4 and L5 area. He also told me that I was born with it. > > After reading the symptoms, I realized I've had symptoms since I was a child. > > I've been to Shands in Gainesville, FL and am now facing surgery. I am very > > nervouse about this. I just had a full Hysteretomy in January 2010 which > > took 2 months to recooperation. > > > > Is this surgery to untether worth it? Does anyone know if Shands is better > > than Mayo Clinic in ville? > > > > Any advise would be appreciated. > > > > Thank you for reading. > > > > Kellie in Tallahassee, FL > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Hi DK, I have an appointment with my NSG on 3/14. I will definitely tell him then. Thanks for the great advice! > > > > What other symptoms are you having, Kellie. That would be important > > perhaps in helping you make the decision. I am not familiar with the hospitals > > in Florida but perhaps someone else on the list is knowledgeable. The > > experience of your surgeon is probably more important than the hospital itself > > and never hesitate to get another opinion or two as this is a big decision. > > Did the neurologist tell you what sort of tether you have? Welcome to > > this site..great place to get info! Randee > > > > > > In a message dated 2/24/2011 8:31:46 P.M. Central Standard Time, > > redgecko97@ writes: > > > > > > > > > > Hi, > > > > I found out last last year that I have TSC. I was having lots of pain in > > my back and my right leg. My neurologist ordered an MRI and found it right > > away around the L4 and L5 area. He also told me that I was born with it. > > After reading the symptoms, I realized I've had symptoms since I was a child. > > I've been to Shands in Gainesville, FL and am now facing surgery. I am very > > nervouse about this. I just had a full Hysteretomy in January 2010 which > > took 2 months to recooperation. > > > > Is this surgery to untether worth it? Does anyone know if Shands is better > > than Mayo Clinic in ville? > > > > Any advise would be appreciated. > > > > Thank you for reading. > > > > Kellie in Tallahassee, FL > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Hi Sharon, Thanks for your response. It sounds like not having surgery is the right choice in your case. My quality of life has significantly gone downhill in the past several months and I am moving forward with the surgery. I will keep you posted on how it goes. I must say I am very impressed with the kindness and generosity of information you and others have displayed. Thanks again. > I have TSC with Lipoma and will not get the surgery just because a doctor > recommends it, everyone is different and not all will go down hill because they > have this condition, I'm almost 56 and got diagoised 2 years ago, yes I have > some pain but I still manage to do things, I personally would never risk the > surgery and the recouperation....my mother had this condition and did many > things with her life until she passed at age 72. > > Sharon > > > > > ________________________________ > > To: tetheredspinalcord > Sent: Thu, February 24, 2011 9:31:40 PM > Subject: 39 with TSC > >  > Hi, > > I found out last last year that I have TSC. I was having lots of pain in my back > and my right leg. My neurologist ordered an MRI and found it right away around > the L4 and L5 area. He also told me that I was born with it. After reading the > symptoms, I realized I've had symptoms since I was a child. I've been to Shands > in Gainesville, FL and am now facing surgery. I am very nervouse about this. I > just had a full Hysteretomy in January 2010 which took 2 months to > recooperation. > > > Is this surgery to untether worth it? Does anyone know if Shands is better than > Mayo Clinic in ville? > > Any advise would be appreciated. > > Thank you for reading. > > Kellie in Tallahassee, FL > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 I am glad that everyone is deciding to do what they think is right for them. It is unfortunate that anyone should go thrugh the symptoms of this. My son has SB Oculta with a TSCS. he was born with a deep sacral dimple and a hemangioma witch is how we cuaght it so early. He had his first surgery on Nov. 12th 2010, he was 10months. We are glad we did the surgery. Though we had a very rough time. Because he got and infection after the first surgery he did not heal, therfore he started leaking spinal fluid out the incision and had to have 4 surgerys in all and we spent 21 days in the hopsital. Please do not let that scare you. It is easier for babies and small-unpotty trained children to get infection because the incision is close to where they do their buisness.  He is doing great now. A healthy almost 14 month old. He is trying to walk, but still can only keep his balance for a couple steps.We will be starting physical theropy for his slightly inverted ankle. (he walks on the inside of his left foot due to under develope and a slight twist in his ankle). His future is still unknown and we will never know the full extent of his condition. some poeple have no problems and then some have many problems. But we take it one day at a time and try not to worry about what may or may not happen as he grows.  I hope you the best and I will keep you in my thoughts. Would love to keep in touch. You may email me anytime. I am also on facebook. I can send you my URL, if you want it send me a email glyndawarren82@...  Subject: Re: 39 with TSC To: tetheredspinalcord Date: Saturday, February 26, 2011, 6:31 PM  Hi Sharon, Thanks for your response. It sounds like not having surgery is the right choice in your case. My quality of life has significantly gone downhill in the past several months and I am moving forward with the surgery. I will keep you posted on how it goes. I must say I am very impressed with the kindness and generosity of information you and others have displayed. Thanks again. > I have TSC with Lipoma and will not get the surgery just because a doctor > recommends it, everyone is different and not all will go down hill because they > have this condition, I'm almost 56 and got diagoised 2 years ago, yes I have > some pain but I still manage to do things, I personally would never risk the > surgery and the recouperation....my mother had this condition and did many > things with her life until she passed at age 72. > > Sharon > > > > > ________________________________ > > To: tetheredspinalcord > Sent: Thu, February 24, 2011 9:31:40 PM > Subject: 39 with TSC > >  > Hi, > > I found out last last year that I have TSC. I was having lots of pain in my back > and my right leg. My neurologist ordered an MRI and found it right away around > the L4 and L5 area. He also told me that I was born with it. After reading the > symptoms, I realized I've had symptoms since I was a child. I've been to Shands > in Gainesville, FL and am now facing surgery. I am very nervouse about this. I > just had a full Hysteretomy in January 2010 which took 2 months to > recooperation. > > > Is this surgery to untether worth it? Does anyone know if Shands is better than > Mayo Clinic in ville? > > Any advise would be appreciated. > > Thank you for reading. > > Kellie in Tallahassee, FL > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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