Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 Stacey, I'm glad you posted. I'll be praying for a " without " ERCP....and no CLUB MED!!!! in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 , Good luck on your ERCP tomorrow, we'll keep you in our prayers. Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 In a message dated 4/30/01 6:57:43 PM Central Daylight Time, ellenr03@... writes: << Ellen >> If there is anything that I or anybody else in this group can do for you or Art just ask and we will be there. in the mean time you two will be in my prayers Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 Ellen, I don't know what to say, except don't give up yet.....please, go to a naturopath, a homeopath, anything, don't accept this without giving it one hell of a fight... please access cancercureegroups for help and advice, they are a great group of people who have overcome odds you wouldn't believe against any medical hope... my thoughts are with you both Patti > >Reply-To: >To: >Subject: (unknown) >Date: Mon, 30 Apr 2001 16:56:20 -0700 (PDT) > >We just got home from the onc (well, we took a side >trip to a local park...), and then to get a >prescription. > >He says, if Art does not have any further treatment, >2-3 months. > >If we hit it with Gemzar (sp?) 6 months at the >outside. > >On the bright side - he said that there will probably >be very little, if any pain... > >Ellen > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 I have heard of this from increasing Armour. We feel it is from toxins being excreted through the skin and general skin changes that take place during the healing process as your body adapts to having more thyroid. Also as the circulation returns to ares where it has been poor it is likely to feel very different! It does pass! -- Artistic Grooming * Hurricane, WV My Ebay Jewelry Store http://stores.ebay.com/valeriescrystalcreations The BEST thyroid website! http://www.stopthethyroidmadness.com http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Wow maryellen - I was up all night itch itch itch - I have my legs scratched raw. I covered them with benedry and whatever else I can find. I am not prone to allergies either. Strange! And I've only been on Armour a few days. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 did the itching start with the Armour? I have had blood flow and oxygen circulation changes due to being in the hyperbaric chamber. I never had the itching you describe. I wonder if there is something in the thyroid you are allergic to? Do you tolerate ham or pork chops? -- Re: (unknown) Wow maryellen - I was up all night itch itch itch - I have my legs scratched raw. I covered them with benedry and whatever else I can find. I am not prone to allergies either. Strange! And I've only been on Armour a few days. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 -At least I know I am not crazy now. It is prety rough all this itching. I took a bendryl last night myself. I have been doing this on and off since I started the amour. I cannot wait till I am symtom free. I believe that that will happen too. It is just taking me a long time so it seems. You have to really be strong to go through this. But we will perservere. Thanks for your help -- In NaturalThyroidHormonesADRENALS , carolynj77@... wrote: > > Wow maryellen - I was up all night itch itch itch - I have my legs scratched > raw. I covered them with benedry and whatever else I can find. I am not prone > to allergies either. Strange! And I've only been on Armour a few days. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 I seem to tolerate ham and pork fine but do not eat too much of that. I don't think I am allergic but anything is possible. Thanks- -- In NaturalThyroidHormonesADRENALS , " C. Mannelli, Ed.D. " wrote: > > did the itching start with the Armour? I have had blood flow and oxygen > circulation changes due to being in the hyperbaric chamber. I never had the > itching you describe. I wonder if there is something in the thyroid you are > allergic to? Do you tolerate ham or pork chops? > > > -- Re: (unknown) > > Wow maryellen - I was up all night itch itch itch - I have my legs scratched > > raw. I covered them with benedry and whatever else I can find. I am not > prone > to allergies either. Strange! And I've only been on Armour a few days. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Oh, Jana. My heart and prayers go out to you. Do you have a good supportive family around? How does MacKenzie handle all this? She will ... the resilience of humans astounds and humbles me. Hugs from a mom to a mom, Randee In a message dated 4/24/2008 1:58:22 P.M. Eastern Daylight Time, janazeckser@... writes: This is the first time posting to this group. My daughter, Mackenzie, has a tethered spinal cord. She is almost 4 and has had 5 surgeries for untethering. We just finished a really tough time over the last 9 months. We had an untethering and ended up with bacterial meningitis. She then had hydrocephalus that required a VP shunt. She also started leaking spinal fluid and had to 4 surgeries to repair the leak. On top of that she had a lumbar shunt put in to try and help the spinal fluid leak. We now are getting ready for another surgery to remove the lumbar shunt. But we also found out a week ago that she has an indirect hernia and will be having that repaired also. My daughter has a neurogenic bladder and has to be cathed 4 times a day. During her last untethering we also had some nerve damage to the bowel system and are having a really tough time with that. We have not been able to potty train and at this time it has not been a priority. Thank you to whoever created this group as tethered spinal cord is a tough disease to have. Jana **************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Dear Jana Big hugs to you with your baby! You must be a very strong person to have gotten through all you describe. A big hug to you! I wonder if the same doc is the one who has done all these surgeries...have you ever sought another opinion? you need not answer--just curious. I hope you are having a peaceful day and that your child is happy. Mindy (unknown) This is the first time posting to this group. My daughter, Mackenzie, has a tethered spinal cord. She is almost 4 and has had 5 surgeries for untethering. We just finished a really tough time over the last 9 months. We had an untethering and ended up with bacterial meningitis. She then had hydrocephalus that required a VP shunt. She also started leaking spinal fluid and had to 4 surgeries to repair the leak. On top of that she had a lumbar shunt put in to try and help the spinal fluid leak. We now are getting ready for another surgery to remove the lumbar shunt. But we also found out a week ago that she has an indirect hernia and will be having that repaired also. My daughter has a neurogenic bladder and has to be cathed 4 times a day. During her last untethering we also had some nerve damage to the bowel system and are having a really tough time with that. We have not been able to potty train and at this time it has not been a priority. Thank you to whoever created this group as tethered spinal cord is a tough disease to have. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Mindy Thanks for the good wishes. We have had the same neurosurgeon for all of her untetherings and her VP and lumbar shunts. We have a general surgeon that will be doing the hernia repair. She also sees a urologist for the neurogenic bladder, a nephrologist for her kidneys, a GI doctor for the constipation/bowel concerns. We have not had a second opinion to date. We see our neurosurgeon at a Children's Hospital. He has one other little girl with a similar case history as Mackenzie's and they did go for a second opinion. This other doctor did send them back with confirmation that everything was already being done. Jana > > Dear Jana > > Big hugs to you with your baby! You must be a very strong person to have gotten through all you describe. A big hug to you! > > I wonder if the same doc is the one who has done all these surgeries...have you ever sought another opinion? you need not answer- -just curious. > > I hope you are having a peaceful day and that your child is happy. > Mindy > > > > (unknown) > > This is the first time posting to this group. My daughter, Mackenzie, > has a tethered spinal cord. She is almost 4 and has had 5 surgeries > for untethering. We just finished a really tough time over the last 9 > months. We had an untethering and ended up with bacterial meningitis. > She then had hydrocephalus that required a VP shunt. She also started > leaking spinal fluid and had to 4 surgeries to repair the leak. On top > of that she had a lumbar shunt put in to try and help the spinal fluid > leak. We now are getting ready for another surgery to remove the > lumbar shunt. But we also found out a week ago that she has an > indirect hernia and will be having that repaired also. My daughter has > a neurogenic bladder and has to be cathed 4 times a day. During her > last untethering we also had some nerve damage to the bowel system and > are having a really tough time with that. We have not been able to > potty train and at this time it has not been a priority. Thank you to > whoever created this group as tethered spinal cord is a tough disease > to have. > > Jana > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 We do have a good family support. However our family and extended family about 2 1/2 hours away from the hospital that she is treated at. So it is hard. I also have 3 other children, so it is really difficult when I have to be gone. Mackenzie does pretty well. This is all she has ever known. Her first surgery was when she was 6 months old. Your right their resilience is amazing. Thanks for all the prayers. Jana > > > Oh, Jana. My heart and prayers go out to you. Do you have a good > supportive family around? How does MacKenzie handle all this? She will ... the > resilience of humans astounds and humbles me. Hugs from a mom to a mom, Randee > > > > In a message dated 4/24/2008 1:58:22 P.M. Eastern Daylight Time, > janazeckser@... writes: > > > > > This is the first time posting to this group. My daughter, Mackenzie, > has a tethered spinal cord. She is almost 4 and has had 5 surgeries > for untethering. We just finished a really tough time over the last 9 > months. We had an untethering and ended up with bacterial meningitis. > She then had hydrocephalus that required a VP shunt. She also started > leaking spinal fluid and had to 4 surgeries to repair the leak. On top > of that she had a lumbar shunt put in to try and help the spinal fluid > leak. We now are getting ready for another surgery to remove the > lumbar shunt. But we also found out a week ago that she has an > indirect hernia and will be having that repaired also. My daughter has > a neurogenic bladder and has to be cathed 4 times a day. During her > last untethering we also had some nerve damage to the bowel system and > are having a really tough time with that. We have not been able to > potty train and at this time it has not been a priority. Thank you to > whoever created this group as tethered spinal cord is a tough disease > to have. > > Jana > > > > > > > > > > **************Need a new ride? Check out the largest site for U.S. used car > listings at AOL Autos. > (http://autos.aol.com/used?NCID=aolcmp00300000002851) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Jana, I'm awed at what kids can survive, but that doesn't mean it doesn't break a mom's heart! I hope she can get these surgeries behind her and get on with things. Bowel issues are not fun, not for the parents, and not for kids when they have to be around other kids and worry about having an accident. A bowel program maybe could help, when you get everything else settled. It sounds like you have so much to deal with right now, anything not absolutely imperative can't be considered. My heart goes out to you and Mackenzie, as well as your other kids. I'm sure this isn't easy. Many hugs, --- janazeckser wrote: > We do have a good family support. However our > family and extended > family about 2 1/2 hours away from the hospital that > she is treated > at. So it is hard. I also have 3 other children, > so it is really > difficult when I have to be gone. Mackenzie does > pretty well. This > is all she has ever known. Her first surgery was > when she was 6 > months old. Your right their resilience is amazing. > Thanks for all > the prayers. > > Jana > > In a message dated 4/24/2008 1:58:22 P.M. Eastern > Daylight Time, > > janazeckser@... writes: > > > > > > > > > > This is the first time posting to this group. My > daughter, > Mackenzie, > > has a tethered spinal cord. She is almost 4 and > has had 5 > surgeries > > for untethering. We just finished a really tough > time over the last > 9 > > months. We had an untethering and ended up with > bacterial > meningitis. > > She then had hydrocephalus that required a VP > shunt. She also > started > > leaking spinal fluid and had to 4 surgeries to > repair the leak. On > top > > of that she had a lumbar shunt put in to try and > help the spinal > fluid > > leak. We now are getting ready for another surgery > to remove the > > lumbar shunt. But we also found out a week ago > that she has an > > indirect hernia and will be having that repaired > also. My daughter > has > > a neurogenic bladder and has to be cathed 4 times > a day. During > her > > last untethering we also had some nerve damage to > the bowel system > and > > are having a really tough time with that. We have > not been able to > > potty train and at this time it has not been a > priority. Thank you > to > > whoever created this group as tethered spinal cord > is a tough > disease > > to have. > > > > Jana > > > > > > > > > > > > > > > > > > > > **************Need a new ride? Check out the > largest site for U.S. > used car > > listings at AOL Autos. > > > (http://autos.aol.com/used?NCID=aolcmp00300000002851) > > > > > > [Non-text portions of this message have been > removed] > > > > > Check out my blog: http://princessmatildalovestostamp.blogspot.com ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 ..I am not an adult who has had surgery but the parent of an adolescnet...just wanted to say YAY!!? Congrats and much good luck!!? Perhaps your local newspaper would like your story to help spread the education?? Randee (unknown) Dear TCS friends, After a three-year search, I was diagnosed with TCS on February 4, 2009 and underwent surgery February 16, 2009. My search began with an appt. at the urologist where I was diagnosed as having interstitial cystitis - even though my problem was retention.? I was given a variety of meds, instillations, bladder stretching surgery, physical therapy, etc., but the problem remained and worsened.? In addition, I have seen an internist, neurologist, rheumatologist, chiropractor, accupuncturist,etc.? I have had blood drawn, taken many vitamins, minerals, and herbs, and been detoxified.? I have been prescribed neurotin and cymbalta.?? I told each doctor that there was a connection between my bladder problems and my burning, aching, increasingly numbing feet and legs.? Each time I was politely dismissed.? My internist thought the numbness and burning might be due to hypothyroidism, as I was somewhat low.? After 5 months of thyroid meds, my internist decided that hypothyroidism was not responsible for the burning and numbness.? That same day, I had an appt. with the urologist (same group I started out with) for a urodynamics test.? I went through my story one more time.? Suddenly, as the doctor was conducting the test, it was like a lightbulb came on.? She told me she thought she knew what the problem might be.?She made a call to a neurosurgeon, helped me get an appt. and the rest is history. It has just been 9 days since surgery, but I'm feeling confident.? The burning and numbness are still present, but I had this awful sensation of my entire legs falling to sleep every time I lay down at night.? That has gone away, and I honestly feel as though my bladder has already improved.? I would very much like to converse with another adult who has had the surgery.? I truly wish everyone well.? This has been a most difficult journey for me, and I would love to be able to help someone else along the way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Randee, When did your child have surgery? Any success? ________________________________ To: tetheredspinalcord Sent: Wednesday, February 25, 2009 10:42:41 AM Subject: Re: (unknown) ..I am not an adult who has had surgery but the parent of an adolescnet.. ..just wanted to say YAY!!? Congrats and much good luck!!? Perhaps your local newspaper would like your story to help spread the education?? Randee (unknown) Dear TCS friends, After a three-year search, I was diagnosed with TCS on February 4, 2009 and underwent surgery February 16, 2009. My search began with an appt. at the urologist where I was diagnosed as having interstitial cystitis - even though my problem was retention.? I was given a variety of meds, instillations, bladder stretching surgery, physical therapy, etc., but the problem remained and worsened.? In addition, I have seen an internist, neurologist, rheumatologist, chiropractor, accupuncturist, etc.? I have had blood drawn, taken many vitamins, minerals, and herbs, and been detoxified.? I have been prescribed neurotin and cymbalta.?? I told each doctor that there was a connection between my bladder problems and my burning, aching, increasingly numbing feet and legs.? Each time I was politely dismissed.? My internist thought the numbness and burning might be due to hypothyroidism, as I was somewhat low.? After 5 months of thyroid meds, my internist decided that hypothyroidism was not responsible for the burning and numbness.? That same day, I had an appt. with the urologist (same group I started out with) for a urodynamics test.? I went through my story one more time.? Suddenly, as the doctor was conducting the test, it was like a lightbulb came on.? She told me she thought she knew what the problem might be.?She made a call to a neurosurgeon, helped me get an appt. and the rest is history. It has just been 9 days since surgery, but I'm feeling confident.? The burning and numbness are still present, but I had this awful sensation of my entire legs falling to sleep every time I lay down at night.? That has gone away, and I honestly feel as though my bladder has already improved.? I would very much like to converse with another adult who has had the surgery.? I truly wish everyone well.? This has been a most difficult journey for me, and I would love to be able to help someone else along the way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Hi .? My daughter is now 18.5. she had surgery at age 13, 15 and 16 due to return of symptoms due to scar tissue.? Initial symptoms were back pain.? that has never returned.? Numbness and tingling and a sense of perceived weakness were the new symptoms.? However, even though there has been some return of these, we and our current NSG concur that we would not redo surgery unless she had measurable symptoms ie actual weakness, bowel or bladder.? Do remember that folks on a support group web site tend not to be those who have had one surgery and then gone on to never need to think about it again .? randee (unknown) Dear TCS friends, After a three-year search, I was diagnosed with TCS on February 4, 2009 and underwent surgery February 16, 2009. My search began with an appt. at the urologist where I was diagnosed as having interstitial cystitis - even though my problem was retention.? I was given a variety of meds, instillations, bladder stretching surgery, physical therapy, etc., but the problem remained and worsened.? In addition, I have seen an internist, neurologist, rheumatologist, chiropractor, accupuncturist, etc.? I have had blood drawn, taken many vitamins, minerals, and herbs, and been detoxified.? I have been prescribed neurotin and cymbalta.?? I told each doctor that there was a connection between my bladder problems and my burning, aching, increasingly numbing feet and legs.? Each time I was politely dismissed.? My internist thought the numbness and burning might be due to hypothyroidism, as I was somewhat low.? After 5 months of thyroid meds, my internist decided that hypothyroidism was not responsible for the burning and numbness.? That same day, I had an appt. with the urologist (same group I started out with) for a urodynamics test.? I went through my story one more time.? Suddenly, as the doctor was conducting the test, it was like a lightbulb came on.? She told me she thought she knew what the problem might be.?She made a call to a neurosurgeon, helped me get an appt. and the rest is history. It has just been 9 days since surgery, but I'm feeling confident.? The burning and numbness are still present, but I had this awful sensation of my entire legs falling to sleep every time I lay down at night.? That has gone away, and I honestly feel as though my bladder has already improved.? I would very much like to converse with another adult who has had the surgery.? I truly wish everyone well.? This has been a most difficult journey for me, and I would love to be able to help someone else along the way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 - In my opinion 11 days post op is way TOO SOON to even think about trying to work!!! I could not have worked for at least three months after surgery. Everyone is different but I think the speediest recovery I've heard of on this group was 3 weeks back to a sendentary position, while some have taken 6 months to a year to get back. It can take weeks, months just to recover from the anesthetic, let alone the surgery. It can also take up to a year for all your nerves to settle and see the full benefits of surgery. Your nerves need time to heal and adjust to their " new location " , so 11 days is way too soon to make any conclusion (all your nerves are likely pretty " freaked out " right now). I suffered very weak and aching legs, along with increased back pain after my surgery, and very slowly they got better, however, unfortunately I can't say I am any better than before my surgery, but I have other disk and spinal issues as well so that implicates things. Dee To: tetheredspinalcord From: susancarr8285@... Date: Thu, 26 Feb 2009 17:04:36 -0800 Subject: Re: (unknown) , I am 11 days post-op, but I have no relief from the burning and numbness, yet. Prior to surgery, I had this terrible sensation of my entire legs and feet " falling to sleep " each time I lay down. That has improved, but I'm a little worried about the numbness. I wasn't given much instruction about post-op care. Basically, I was told not to bend, twist, or lift anything over 5 pounds. I wasn't told when I might feel like returning to work. I am an elementary school principal and have gone to work twice for about two hours. By the end of those two hours, I have been weak, weary, and ready to go home. Is this typical? I would appreciate any info you can give me about your experience. I truly hope your next surgery go well. ________________________________ To: tetheredspinalcord Sent: Thursday, February 26, 2009 7:29:27 PM Subject: Re: (unknown) The first one was very successful. I noticed improvement in the pain immediately after surgery. Took a couple of weeks before I was getting around well but after recovering from surgery I was able to return to work full-time as a nurse. The neuropathy went away as well. Unfortunately, I fell in 2005 (surgery in 2000) and broke some bones back there. Haven't recovered from that really, lots of nerve damage evidently (or I am retethered). Kids recover much quicker though and I'm sure all will go well Make sure that the nurses are very familiar with taking care of a post surgical TC pt though....mine weren't and complicated things for me by mishandling me. Blessings, From: Carr <susancarr8285@ yahoo.com> Subject: (unknown) To: tetheredspinalcord@ yahoogroups. com Date: Wednesday, February 25, 2009, 3:07 PM Dear TCS friends, After a three-year search, I was diagnosed with TCS on February 4, 2009 and underwent surgery February 16, 2009. My search began with an appt. at the urologist where I was diagnosed as having interstitial cystitis - even though my problem was retention. I was given a variety of meds, instillations, bladder stretching surgery, physical therapy, etc., but the problem remained and worsened. In addition, I have seen an internist, neurologist, rheumatologist, chiropractor, accupuncturist, etc. I have had blood drawn, taken many vitamins, minerals, and herbs, and been detoxified. I have been prescribed neurotin and cymbalta. I told each doctor that there was a connection between my bladder problems and my burning, aching, increasingly numbing feet and legs. Each time I was politely dismissed. My internist thought the numbness and burning might be due to hypothyroidism, as I was somewhat low. After 5 months of thyroid meds, my internist decided that hypothyroidism was not responsible for the burning and numbness. That same day, I had an appt. with the urologist (same group I started out with) for a urodynamics test. I went through my story one more time. Suddenly, as the doctor was conducting the test, it was like a lightbulb came on. She told me she thought she knew what the problem might be. She made a call to a neurosurgeon, helped me get an appt. and the rest is history. It has just been 9 days since surgery, but I'm feeling confident. The burning and numbness are still present, but I had this awful sensation of my entire legs falling to sleep every time I lay down at night. That has gone away, and I honestly feel as though my bladder has already improved. I would very much like to converse with another adult who has had the surgery. I truly wish everyone well. This has been a most difficult journey for me, and I would love to be able to help someone else along the way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 In a message dated 2/27/2009 8:11:58 A.M. Eastern Standard Time, livedream_believe@... writes: , OMG!! No way! You are not ready for work yet Eleven days is very soon after a surgery... I had a fairly complex hernia reconstruction and that took six weeks for me to recover from the surgery and pain and to feel good enough to get up and about like normal... It took four weeks just to stop needing the narcotic pain meds. I'm sure spinal surgery has to be much worse. My son had the spinal detethering and spine fusion at the same time, and he wouldn't have been ready to attempt any school for about 5 weeks minimum, and he was on narcotics for three weeks and they heal much faster than we adults do. Don't even THINK of returning to any form of " normal " work activity until you are totally off the pain meds, that is standard protocol after any surgery. Is there any way you can telecommute from home with computer and phone for a little bit each day? Good luck with your recovery! Connie Mom to Sara 17, Nicky 10 (GI issues, megacolon), and 8 (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal fistula imperforate anus (repaired 5/00, managed with daily Exlax), single kidney (being treated with ACE inhibitor Enalapril to protect it), PDA (closed on its own), malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06), extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial torsion and 4.5cm length discrepancy - wears AFO and shoelift, SUA, GI reflux, DGE/gastroparesis (managed with periactin), mild swallowing dysphagia, and the most beautiful smile ever) conni60640@... Our website - 's VACTERL journey: _http://members.tripod.com/conni60640-ivil/_ (http://members.tripod.com/conni60640-ivil/) VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_ (http://health.groups.yahoo.com/group/VACTERLNetwork/) TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_ (http://health.groups.yahoo.com/group/LMC-TCS/) Congenital scoliosis support group _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_ (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) Anorectal malformations support - The Pull-Thru Network_ http://www.pullthrunetwork.org/index.php_ (http://www.pullthrunetwork.org/index.php) S. Jersey **************You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (http://movies.aol.com/oscars-academy-awards?ncid=emlcntusmovi00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 , OMG!! No way! You are not ready for work yet. I'm sorry, I know you need to get back being the principal and all but please let someone step in for you...maybe you could answer questions or make decisions from home just keep the phone with you so you dont have to walk to get it. I wasn't able to return to work for ...hmmm...I think it was around 3 months and then it was a couple of hours and worked up to my full shift over a few weeks. You MUST give your body a chance to heal. I'm sorry that you have seen no improvement in the burning and numbness. The nerves are still freaked out so give them time....will keep my fingers crossed  I wasn't given any post-op instruction either except... " if it hurts don't do it " . I was told that there is a chance to re-tether but that it is very uncommon...not sure I believe that one anymore but I also dont know the statistics. Bottom line is, don't do anything that may compromise your chances of making this surgery as successful as possible for you.  Blessings, > > From: Carr <susancarr8285@ yahoo.com> > > Subject: (unknown) > > To: tetheredspinalcord@ yahoogroups. com > > Date: Wednesday, February 25, 2009, 3:07 PM > > Dear TCS friends, > > After a three-year search, I was diagnosed with TCS on February 4, > 2009 and underwent surgery February 16, 2009. > > My search began with an appt. at the urologist where I was diagnosed > as having interstitial cystitis - even though my problem was > retention. I was given a variety of meds, instillations, bladder > stretching surgery, physical therapy, etc., but the problem remained > and worsened. > > In addition, I have seen an internist, neurologist, rheumatologist, > chiropractor, accupuncturist, etc. I have had blood drawn, taken > many vitamins, minerals, and herbs, and been detoxified. I have been > prescribed neurotin and cymbalta. > > I told each doctor that there was a connection between my bladder > problems and my burning, aching, increasingly numbing feet and legs. > Each time I was politely dismissed. My internist thought the > numbness and burning might be due to hypothyroidism, as I was > somewhat low. After 5 months of thyroid meds, my internist decided > that hypothyroidism was not responsible for the burning and > numbness. That same day, I had an appt. with the urologist (same > group I started out with) for a urodynamics test. > > I went through my story one more time. Suddenly, as the doctor was > conducting the test, it was like a lightbulb came on. She told me > she thought she knew what the problem might be. She made a call to a > neurosurgeon, helped me get an appt. and the rest is history. > > It has just been 9 days since surgery, but I'm feeling confident. > The burning and numbness are still present, but I had this awful > sensation of my entire legs falling to sleep every time I lay down > at night. That has gone away, and I honestly feel as though my > bladder has already improved. > > I would very much like to converse with another adult who has had > the surgery. > > I truly wish everyone well. This has been a most difficult journey > for me, and I would love to be able to help someone else along the > way. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 : if this doesn't come up on your message board reply, please could you post it up for me, thanks. Nina in the UK!! , I wasn't even thinking about walking around 11 days post-surgery!!!!! I went back to driving after 3 weeks (should have been 4) and went back to work full time 12 weeks post-surgery. It took at least 5 years till I felt anything like my pre-op self, and all that time I had nerve-related problems - tingling, burning, numbness, feet swelling uncontrollably (still do 8 yrs post-op), exhaustion, etc etc etc. YOU HAVE TO REMEMBER that the spinal cord is the conduit through which all your actions go - any injury to it is a major insult to your body, aside from you going through major spinal surgery. Any surgery that goes through your spinal column and near your spinal cord (even with a supposedly " simple " (what a joke!!) filum and arachnoid adhesion detethering like mine) will take a long time to recover from. You HAVE to give yourself time. Work will have to wait. Your health for the rest of your life could depend on how kind you are to yourself at this time. You being tired and exhausted now is your body saying " whoa, stop, I need to rest, I don't have the resources for day to day living, let alone getting over this major insult to my system " . You must rest and take each day as it comes. My nsg said to me, which is so true " there is nothing you can do to hurry the healing process along. It is only a question of time and patience " and he is so right. It takes a long time to get your head round that, but it does work out in the end. Hopefully you will get to a point one day and say " hey, that's been a good day, very little pain, or pain I can deal with, hey I'm making progress " . Good luck. Keep yourself posted. Dee: I still have your email to me which I haven't replied to. I will do so as soon as I can (3 jobs at the moment are keeping me pretty busy!!) Nina Bristol, UK http://www.btinternet.com/~tetheredcordresources > , OMG!! No way! You are not ready for work yet. I'm sorry, I know you > need to get back being the principal and all but please let someone step > in for you...maybe you could answer questions or make decisions from home > just keep the phone with you so you dont have to walk to get it. I wasn't > able to return to work for ...hmmm...I think it was around 3 months and > then it was a couple of hours and worked up to my full shift over a few > weeks. You MUST give your body a chance to heal. I'm sorry that you have > seen no improvement in the burning and numbness. The nerves are still > freaked out so give them time....will keep my fingers crossed  I wasn't > given any post-op instruction either except... " if it hurts don't do it " . I > was told that there is a chance to re-tether but that it is very > uncommon...not sure I believe that one anymore but I also dont know the > statistics. Bottom line is, don't do anything that may compromise your > chances of making this > surgery as successful as possible for you.  Blessings, > > >> >> From: Carr <susancarr8285@ yahoo.com> >> >> Subject: (unknown) >> >> To: tetheredspinalcord@ yahoogroups. com >> >> Date: Wednesday, February 25, 2009, 3:07 PM >> >> Dear TCS friends, >> >> After a three-year search, I was diagnosed with TCS on February 4, >> 2009 and underwent surgery February 16, 2009. >> >> My search began with an appt. at the urologist where I was diagnosed >> as having interstitial cystitis - even though my problem was >> retention. I was given a variety of meds, instillations, bladder >> stretching surgery, physical therapy, etc., but the problem remained >> and worsened. >> >> In addition, I have seen an internist, neurologist, rheumatologist, >> chiropractor, accupuncturist, etc. I have had blood drawn, taken >> many vitamins, minerals, and herbs, and been detoxified. I have been >> prescribed neurotin and cymbalta. >> >> I told each doctor that there was a connection between my bladder >> problems and my burning, aching, increasingly numbing feet and legs. >> Each time I was politely dismissed. My internist thought the >> numbness and burning might be due to hypothyroidism, as I was >> somewhat low. After 5 months of thyroid meds, my internist decided >> that hypothyroidism was not responsible for the burning and >> numbness. That same day, I had an appt. with the urologist (same >> group I started out with) for a urodynamics test. >> >> I went through my story one more time. Suddenly, as the doctor was >> conducting the test, it was like a lightbulb came on. She told me >> she thought she knew what the problem might be. She made a call to a >> neurosurgeon, helped me get an appt. and the rest is history. >> >> It has just been 9 days since surgery, but I'm feeling confident. >> The burning and numbness are still present, but I had this awful >> sensation of my entire legs falling to sleep every time I lay down >> at night. That has gone away, and I honestly feel as though my >> bladder has already improved. >> >> I would very much like to converse with another adult who has had >> the surgery. >> >> I truly wish everyone well. This has been a most difficult journey >> for me, and I would love to be able to help someone else along the >> way. >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 ya, what's that about a " simple " filum detether -- there was nothing simple about it!!! When I complained of terrible low back pain in hospital keeping me awake at night my neurosurgeon said I shouldn't be in so much pain as it was just a chicken scratch... well that chicken scratch of an incision still gives me pain one year later!!! -- make sure you are not even thinking about driving for at least 3 weeks, any sudden movement can really hurt you right now and make your recovery even longer. My neurosurgeon basically said no driving for 3 weeks and nothing but short walks as I could tolerate it. Don't push yourself , the last thing you want is a spinal leak. Dee > To: tetheredspinalcord > From: Nina.Bunton@... > Date: Fri, 27 Feb 2009 14:47:15 +0000 > Subject: Re: (unknown) > > : if this doesn't come up on your message board reply, please > could you post it up for me, thanks. Nina in the UK!! > > , I wasn't even thinking about walking around 11 days > post-surgery!!!!! I went back to driving after 3 weeks (should have been > 4) and went back to work full time 12 weeks post-surgery. It took at least > 5 years till I felt anything like my pre-op self, and all that time I had > nerve-related problems - tingling, burning, numbness, feet swelling > uncontrollably (still do 8 yrs post-op), exhaustion, etc etc etc. > > YOU HAVE TO REMEMBER that the spinal cord is the conduit through which all > your actions go - any injury to it is a major insult to your body, aside > from you going through major spinal surgery. Any surgery that goes through > your spinal column and near your spinal cord (even with a supposedly > " simple " (what a joke!!) filum and arachnoid adhesion detethering like > mine) will take a long time to recover from. > > You HAVE to give yourself time. Work will have to wait. Your health for > the rest of your life could depend on how kind you are to yourself at this > time. You being tired and exhausted now is your body saying " whoa, stop, I > need to rest, I don't have the resources for day to day living, let alone > getting over this major insult to my system " . You must rest and take each > day as it comes. > > My nsg said to me, which is so true " there is nothing you can do to hurry > the healing process along. It is only a question of time and patience " and > he is so right. It takes a long time to get your head round that, but it > does work out in the end. Hopefully you will get to a point one day and > say " hey, that's been a good day, very little pain, or pain I can deal > with, hey I'm making progress " . > > Good luck. Keep yourself posted. > > Dee: I still have your email to me which I haven't replied to. I will do > so as soon as I can (3 jobs at the moment are keeping me pretty busy!!) > > Nina > Bristol, UK > http://www.btinternet.com/~tetheredcordresources > > > > , OMG!! No way! You are not ready for work yet. I'm sorry, I know you > > need to get back being the principal and all but please let someone step > > in for you...maybe you could answer questions or make decisions from home > > just keep the phone with you so you dont have to walk to get it. I wasn't > > able to return to work for ...hmmm...I think it was around 3 months and > > then it was a couple of hours and worked up to my full shift over a few > > weeks. You MUST give your body a chance to heal. I'm sorry that you have > > seen no improvement in the burning and numbness. The nerves are still > > freaked out so give them time....will keep my fingers crossed I wasn't > > given any post-op instruction either except... " if it hurts don't do it " . I > > was told that there is a chance to re-tether but that it is very > > uncommon...not sure I believe that one anymore but I also dont know the > > statistics. Bottom line is, don't do anything that may compromise your > > chances of making this > > surgery as successful as possible for you. Blessings, > > > > > >> > >> From: Carr <susancarr8285@ yahoo.com> > >> > >> Subject: (unknown) > >> > >> To: tetheredspinalcord@ yahoogroups. com > >> > >> Date: Wednesday, February 25, 2009, 3:07 PM > >> > >> Dear TCS friends, > >> > >> After a three-year search, I was diagnosed with TCS on February 4, > >> 2009 and underwent surgery February 16, 2009. > >> > >> My search began with an appt. at the urologist where I was diagnosed > >> as having interstitial cystitis - even though my problem was > >> retention. I was given a variety of meds, instillations, bladder > >> stretching surgery, physical therapy, etc., but the problem remained > >> and worsened. > >> > >> In addition, I have seen an internist, neurologist, rheumatologist, > >> chiropractor, accupuncturist, etc. I have had blood drawn, taken > >> many vitamins, minerals, and herbs, and been detoxified. I have been > >> prescribed neurotin and cymbalta. > >> > >> I told each doctor that there was a connection between my bladder > >> problems and my burning, aching, increasingly numbing feet and legs. > >> Each time I was politely dismissed. My internist thought the > >> numbness and burning might be due to hypothyroidism, as I was > >> somewhat low. After 5 months of thyroid meds, my internist decided > >> that hypothyroidism was not responsible for the burning and > >> numbness. That same day, I had an appt. with the urologist (same > >> group I started out with) for a urodynamics test. > >> > >> I went through my story one more time. Suddenly, as the doctor was > >> conducting the test, it was like a lightbulb came on. She told me > >> she thought she knew what the problem might be. She made a call to a > >> neurosurgeon, helped me get an appt. and the rest is history. > >> > >> It has just been 9 days since surgery, but I'm feeling confident. > >> The burning and numbness are still present, but I had this awful > >> sensation of my entire legs falling to sleep every time I lay down > >> at night. That has gone away, and I honestly feel as though my > >> bladder has already improved. > >> > >> I would very much like to converse with another adult who has had > >> the surgery. > >> > >> I truly wish everyone well. This has been a most difficult journey > >> for me, and I would love to be able to help someone else along the > >> way. > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 , I'm so glad I found this group. I honestly have been given very little guidance. I just need to run some things by you. Currently, I sleep on my back or side; when awake, I recline in a chair. I walk around the inside my house, but that's the extent of my exercise. Does this sound okay? My surgeon pretty much just left it up to how I feel, but how I feel is a little hard to describe. When I'm up for a while, I feel shaky and weak. I'm also finding that I nap quite a bit. Did you have burning, aching, and numb feet and legs? If so, when should I expect some of it to subside? I have noticed a subtle improvement in my bladder (retention was my problem), but no difference in the burning and extreme numbness of my feet and legs. After reading your response and the responses of several others, I'm going to take it easy about work. I thought I would try a couple of hours every other day until I feel stronger.. I have been able to take care of many things via email and telephone, but I do worry when I'm away. I pray that everything works out about your house; in this economy, surely the mortgage company will work with you. Respectfully, ________________________________ To: tetheredspinalcord Sent: Friday, February 27, 2009 8:11:42 AM Subject: Re: (unknown) , OMG!! No way! You are not ready for work yet. I'm sorry, I know you need to get back being the principal and all but please let someone step in for you...maybe you could answer questions or make decisions from home just keep the phone with you so you dont have to walk to get it. I wasn't able to return to work for ...hmmm...I think it was around 3 months and then it was a couple of hours and worked up to my full shift over a few weeks. You MUST give your body a chance to heal. I'm sorry that you have seen no improvement in the burning and numbness. The nerves are still freaked out so give them time....will keep my fingers crossed  I wasn't given any post-op instruction either except... " if it hurts don't do it " . I was told that there is a chance to re-tether but that it is very uncommon...not sure I believe that one anymore but I also dont know the statistics. Bottom line is, don't do anything that may compromise your chances of making this surgery as successful as possible for you.  Blessings, > > From: Carr <susancarr8285@ yahoo.com> > > Subject: (unknown) > > To: tetheredspinalcord@ yahoogroups. com > > Date: Wednesday, February 25, 2009, 3:07 PM > > Dear TCS friends, > > After a three-year search, I was diagnosed with TCS on February 4, > 2009 and underwent surgery February 16, 2009. > > My search began with an appt. at the urologist where I was diagnosed > as having interstitial cystitis - even though my problem was > retention. I was given a variety of meds, instillations, bladder > stretching surgery, physical therapy, etc., but the problem remained > and worsened. > > In addition, I have seen an internist, neurologist, rheumatologist, > chiropractor, accupuncturist, etc. I have had blood drawn, taken > many vitamins, minerals, and herbs, and been detoxified. I have been > prescribed neurotin and cymbalta. > > I told each doctor that there was a connection between my bladder > problems and my burning, aching, increasingly numbing feet and legs. > Each time I was politely dismissed. My internist thought the > numbness and burning might be due to hypothyroidism, as I was > somewhat low. After 5 months of thyroid meds, my internist decided > that hypothyroidism was not responsible for the burning and > numbness. That same day, I had an appt. with the urologist (same > group I started out with) for a urodynamics test. > > I went through my story one more time. Suddenly, as the doctor was > conducting the test, it was like a lightbulb came on. She told me > she thought she knew what the problem might be. She made a call to a > neurosurgeon, helped me get an appt. and the rest is history. > > It has just been 9 days since surgery, but I'm feeling confident. > The burning and numbness are still present, but I had this awful > sensation of my entire legs falling to sleep every time I lay down > at night. That has gone away, and I honestly feel as though my > bladder has already improved. > > I would very much like to converse with another adult who has had > the surgery. > > I truly wish everyone well. This has been a most difficult journey > for me, and I would love to be able to help someone else along the > way. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 ,  I strongly agree with everyone much to soon to be going back to work. I had my surgery six weeks ago yesterday and still feel very weak in my legs. I have a follow up with the doctor on tuesday and have decided that I need a few more weeks before going back to work. I am a nurse on a post partum floor and don't have alot of heavy lifting etc...however I just don't feel strong enough yet. My back and even my abdomen feel very stiff and sore, I suppose it will take awhile to build up the strength and muscle lost due to inactivity for the last couple of months.  wendy > > From: Carr <susancarr8285@ yahoo.com> > > Subject: (unknown) > > To: tetheredspinalcord@ yahoogroups. com > > Date: Wednesday, February 25, 2009, 3:07 PM > > Dear TCS friends, > > After a three-year search, I was diagnosed with TCS on February 4, > 2009 and underwent surgery February 16, 2009. > > My search began with an appt. at the urologist where I was diagnosed > as having interstitial cystitis - even though my problem was > retention. I was given a variety of meds, instillations, bladder > stretching surgery, physical therapy, etc., but the problem remained > and worsened. > > In addition, I have seen an internist, neurologist, rheumatologist, > chiropractor, accupuncturist, etc. I have had blood drawn, taken > many vitamins, minerals, and herbs, and been detoxified. I have been > prescribed neurotin and cymbalta. > > I told each doctor that there was a connection between my bladder > problems and my burning, aching, increasingly numbing feet and legs. > Each time I was politely dismissed. My internist thought the > numbness and burning might be due to hypothyroidism, as I was > somewhat low. After 5 months of thyroid meds, my internist decided > that hypothyroidism was not responsible for the burning and > numbness. That same day, I had an appt. with the urologist (same > group I started out with) for a urodynamics test. > > I went through my story one more time. Suddenly, as the doctor was > conducting the test, it was like a lightbulb came on. She told me > she thought she knew what the problem might be. She made a call to a > neurosurgeon, helped me get an appt. and the rest is history. > > It has just been 9 days since surgery, but I'm feeling confident. > The burning and numbness are still present, but I had this awful > sensation of my entire legs falling to sleep every time I lay down > at night. That has gone away, and I honestly feel as though my > bladder has already improved. > > I would very much like to converse with another adult who has had > the surgery. > > I truly wish everyone well. This has been a most difficult journey > for me, and I would love to be able to help someone else along the > way. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2009 Report Share Posted April 9, 2009 Livvie, Although I really don't have advice for you as my son is only six, but I wanted to tell you that we are always here to listen to you when you vent. I am so sorry that this is happening and I know it must be extremely difficult to deal with esp when you are raising her child. I am in total agreement about the boyfriend not allowed there. It sounds as if he is just usung her anyway. Please keep us all updated on the situation. I'm sure someone here can help you with your questions. Subject: (unknown) To: tetheredspinalcord Date: Wednesday, April 8, 2009, 3:41 PM I am so frustrated I don't know where to begin. My daughter had her 4th de-tethering surgery 6 weeks ago. She is on so much medicine, and none of it seems to be helping much. After the first 2 surgeries she was fine, and I realize that age has a lot to do with it, but this time there are a lot of issues that we have never faced before. Her inability to control her bladder, the constant constipation, anxiety, inability to sleep and the list goes on. I am frustrated and exhausted, I can't imagine how she feels. I never see a smile anymore, I just don't know what to do. She is rude to me and doesn't seem to care that she hurts my feelings. Has no consideration for the fact that my husband and I have taken on the responsibility of raising a 4 year old because she can't bring herself to do the right thing, or that I have taken 2 months off from work to help her out. Now she's mad because I won't allow her boyfriend and a friend of his to spend the night in my home. When is enough, enough, what does she want blood. Honest, I want to help her, and I know she is going through a hard time right now, but this is not easy on any of us. We are not sleeping, I get up 2 or 3 times a night and find her asleep in the wheelchair, when I tell her to go to bed she tells me she's not sleepy. This has been going on for almost a week now. It's like she is afraid to go to bed. I don't know what to do. I am having to find her another primary care physician, she pissed off the one she had, going to get pills for her boyfriend. I didn't know she was doing this until I called to schedule her an appointment to have her meds looked after and try to get some home health papers signed and the Dr. wouldn't see her. She says she doesn't know why, but I know that she has used her " issues " in the past to get narcotics for him. i tried to explain to her that it will hurt her in the long run, the time will come when she needs them and no one will want to give them. But, what do I know I am just her mother. After all, he, the boyfriend, knows it all. I hate to do it, but if her attitude doesn't change I am going to have to ask her to leave. I refuse put to my health, my marriage and the well being of her child at risk when she gives me nothing but disrespect and attitude. Thanks for allowing me to vent a little. Now to the reason for the post. What are some ways that some of you deal with the pain, anxiety and other things that go along with TSC, and does anyone know of a list for caregivers that might be helpful? Livvie Quote Link to comment Share on other sites More sharing options...
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