Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hi Beth, so sorry to hear your news. TC is just damn aggravating some times!! This pain!! I'm sorry, I don't know about the stimulators....I figure if we make scar tissue so readily won't we make scar tissue around a stimulator?? As for bringing back neuro function...as far as I know nothing can be done if they cant free up the nerves surgically. Stem cell may help when they get it going good here in the US. How many surgeries have you had? I am so lucky that mine was caught late and because I haven't had insurance it hasnt been a choice for me so I have only had one. I am hoping to get some insurance so I can get another soon because of this unrelenting pain. The first one helped a LOT with pain...not sure if I can expect as good of results on the second one though I have not heard anyone speak of having a stimulator in forum but I may have missed it. Hopefully someone can tell you more about them. I am waiting to see Dr. Oro' (probably not until Feb 09) and I know they have a pain clinic there so I am hoping if I can't get surgery then at least they can give me some better pain control. Will be sending you lots of love & light..hang in there, I know how hard it is sometimes but somehow we see another day, one of these days someone will figure out how to fix us Subject: DRS. APPT. To: tetheredspinalcord Date: Sunday, November 23, 2008, 3:37 AM HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE SPINAL CORD STIMULATOR ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hi Beth. There are folks on here who have had spinal cord implant stimulators. Hopefully, you will hear from them..perhaps put it in the subject line of your email to get info form those. I know it has helped many people with a wide variety of pain issues. Prayers your way! Randee In a message dated 11/23/2008 12:43:56 P.M. Eastern Standard Time, philaflyersfan1@... writes: HI ALL! BETH HERE, I WANTED TO THANK KATHERINE FOR HER REPLY. I HAVE ONLY HAD 1 SURGERY IN AUG. OF 06 BUT HAD MANY COMPLICATIONS. MY ORIGINAL SCAR FROM MY SPINA BIFIDA OPENED BACK UP FROM AN INFECTION AND IT TOOK 8 1/2 MONTHS TO HEEL, I LOST SOME FEELING IN MY FEET FROM THE NERVES BEING TOUCHED. MY DR. SAID THAT MY NERVES WERE ALL TANGLED TOGETHER AND WRAPPED AROUND MY SPINAL CORD SO FOR HIM TO REMOVE SOME SCAR TISSUE HE HAD TO MOVE SOME NERVES. IF ANYONE CAN GIVE ME MORE ADVICE ON WHERE TO TURN TO NEXT I WOULD APPRECIATE IT. THANK YOU ALL FOR LISTENING. BEST WISHES TO YOU ALL, BETH From: philaflyersfan1 <philaflyersfan1@ yahoo.com> Subject: DRS. APPT. To: tetheredspinalcord@ yahoogroups. com Date: Sunday, November 23, 2008, 3:37 AM HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE SPINAL CORD STIMULATOR ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] **************One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/100000075x1212962939x1200825291/aol?redir=h\ ttp://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 In a message dated 11/23/2008 2:40:44 P.M. Eastern Standard Time, deeinbc@... writes: Beth, sorry I can't find the name of the gal who had the spinal implant. If you log onto the group website and go into message section, there is a search option. Here is what I found searching " stimulator " to see who had it done: _http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662_ (http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662) This is a great option when you know the group has discussed something in the past but can't remember specifics, so I use it all the time with my various groups 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, 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 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful smile ever) conni60640@... Our website: _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 **************Check out smokin’ hot deals on laptops, desktops and more from Dell. Shop Deals (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol?redir=http://\ ad.doubleclick.net/clk;209513277;31396581;l) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 HI ALL! BETH HERE, I WANTED TO THANK KATHERINE FOR HER REPLY. I HAVE ONLY HAD 1 SURGERY IN AUG. OF 06 BUT HAD MANY COMPLICATIONS. MY ORIGINAL SCAR FROM MY SPINA BIFIDA OPENED BACK UP FROM AN INFECTION AND IT TOOK 8 1/2 MONTHS TO HEEL, I LOST SOME FEELING IN MY FEET FROM THE NERVES BEING TOUCHED. MY DR. SAID THAT MY NERVES WERE ALL TANGLED TOGETHER AND WRAPPED AROUND MY SPINAL CORD SO FOR HIM TO REMOVE SOME SCAR TISSUE HE HAD TO MOVE SOME NERVES. IF ANYONE CAN GIVE ME MORE ADVICE ON WHERE TO TURN TO NEXT I WOULD APPRECIATE IT. THANK YOU ALL FOR LISTENING. BEST WISHES TO YOU ALL, BETH From: philaflyersfan1 <philaflyersfan1@ yahoo.com> Subject: DRS. APPT. To: tetheredspinalcord@ yahoogroups. com Date: Sunday, November 23, 2008, 3:37 AM HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE SPINAL CORD STIMULATOR ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Not having surgey is good news. Pain mgt with some drugs--is our future -neuronton??? VicOdin???? Linoderm patches???? sorry about the spelling----keep active not matter how much it hurts -SPINAL CORD STIMULATOR has risk --infection, etc--plus I never heard positve with TSCpatients----I have with heard good stuff with thoracic disc nerve pain but we have to be different---- good luck Mac > > HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND > I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, > BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER > SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE > SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE > TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING > MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD > TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT > SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT > TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR > PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH > THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF > SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW > WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY > APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hi Beth, I posted a couple months ago about laser therapy. I have been doing it for a couple of months and just purchased a home unit so I can treat other areas of my body along with my back. I asked Dr Khan at Meditech if they had done much work on patients with tethered spinal cords and he said they have had 1/2 a dozen cases and had mixed results, some being very positive. They are having tremendous success with treating back problems including degen disk disease, disk bulges, herniated disks, sciatica, stenosis, etc. He claims the laser penetrates right down to the nerve roots and spinal cord. Dr Khan is optimistic that I will continue to do really well with prolonged treatment. My pain is sooo much better since starting this therapy, I can now sit comfortably, walk reasonable distances (eg have been able to shop for up to a couple of hours, can do about a 1/2 hour continuous walk, swelling is down and I have not had any more numbness or wierd tingly feelings in my feet or legs (it was not severe to start with though). Now I have more than tc... I also have spondolythesis, disk bulges, some degeneration and had a tc release in March of this year (thickened filum). Although I have a long way to go yet, I feel I have hope, two months ago I was feeling hopeless and the neurosurgeon wanted me to consider a spinal fusion. I have no idea if this therapy can help others but I just want people to be aware of it. See www.meditech-bioflex.com for more information. Unfortunately long term therapy is not cheap and I am not sure what type of coverage exists in the states. I was doing treatment three times a week and now that I have a home unit will do it every other day. Here if a physio, chiro or massage therapist is offering the treatment you can claim in on extended health if you have it. Will keep everyone posted of my progress. PS there was someone in Vancouver who had a spinal implant.... I think I saved her old mssgs from earlier this year as I was corresponding with her.... will look in my old emails and see if I can find her for you. Dee To: tetheredspinalcord From: philaflyersfan1@... Date: Sun, 23 Nov 2008 09:43:18 -0800 Subject: Re: DRS. APPT. HI ALL! BETH HERE, I WANTED TO THANK KATHERINE FOR HER REPLY. I HAVE ONLY HAD 1 SURGERY IN AUG. OF 06 BUT HAD MANY COMPLICATIONS. MY ORIGINAL SCAR FROM MY SPINA BIFIDA OPENED BACK UP FROM AN INFECTION AND IT TOOK 8 1/2 MONTHS TO HEEL, I LOST SOME FEELING IN MY FEET FROM THE NERVES BEING TOUCHED. MY DR. SAID THAT MY NERVES WERE ALL TANGLED TOGETHER AND WRAPPED AROUND MY SPINAL CORD SO FOR HIM TO REMOVE SOME SCAR TISSUE HE HAD TO MOVE SOME NERVES. IF ANYONE CAN GIVE ME MORE ADVICE ON WHERE TO TURN TO NEXT I WOULD APPRECIATE IT. THANK YOU ALL FOR LISTENING. BEST WISHES TO YOU ALL, BETH From: philaflyersfan1 <philaflyersfan1@ yahoo.com> Subject: DRS. APPT. To: tetheredspinalcord@ yahoogroups. com Date: Sunday, November 23, 2008, 3:37 AM HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE SPINAL CORD STIMULATOR ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Beth, sorry I can't find the name of the gal who had the spinal implant. Dee To: tetheredspinalcord From: philaflyersfan1@... Date: Sun, 23 Nov 2008 09:43:18 -0800 Subject: Re: DRS. APPT. HI ALL! BETH HERE, I WANTED TO THANK KATHERINE FOR HER REPLY. I HAVE ONLY HAD 1 SURGERY IN AUG. OF 06 BUT HAD MANY COMPLICATIONS. MY ORIGINAL SCAR FROM MY SPINA BIFIDA OPENED BACK UP FROM AN INFECTION AND IT TOOK 8 1/2 MONTHS TO HEEL, I LOST SOME FEELING IN MY FEET FROM THE NERVES BEING TOUCHED. MY DR. SAID THAT MY NERVES WERE ALL TANGLED TOGETHER AND WRAPPED AROUND MY SPINAL CORD SO FOR HIM TO REMOVE SOME SCAR TISSUE HE HAD TO MOVE SOME NERVES. IF ANYONE CAN GIVE ME MORE ADVICE ON WHERE TO TURN TO NEXT I WOULD APPRECIATE IT. THANK YOU ALL FOR LISTENING. BEST WISHES TO YOU ALL, BETH From: philaflyersfan1 <philaflyersfan1@ yahoo.com> Subject: DRS. APPT. To: tetheredspinalcord@ yahoogroups. com Date: Sunday, November 23, 2008, 3:37 AM HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE SPINAL CORD STIMULATOR ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hello Beth: V here on the list knows of someone who has experience with a Spinal Cord Stimulator. I e-mailed her off-list to see if she can contact you -- as when I myself was inquiring whether or not anyone here had experience with such a procedure/device -- she put me in contact with a colleague of hers. Unfortunately, I cannot seem to find his e-mail. I also wanted to comment on pain management per 's reply and will do so separately. Hang in there. From experience I know what you're going through and how devastating hearing " no more surgery " can be when you, yourself are still suffering greatly. Scar tissue is a mighty beast and one that readily affects most persons with this rare condition. Please feel free to contact me off-list anytime. All the best to you & your family. -- TSC Listserv Moderator emaher1916@... > > In a message dated 11/23/2008 2:40:44 P.M. Eastern Standard Time, > deeinbc@... writes: > > Beth, sorry I can't find the name of the gal who had the spinal implant. > > If you log onto the group website and go into message section, there is a > search option. Here is what I found searching " stimulator " to see who had it > done: > > _http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 _ > (http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 ) > > This is a great option when you know the group has discussed something in > the past but can't remember specifics, so I use it all the time with my various > groups > > > 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, 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 3.5cm lift, SUA, GI reflux, > DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most > beautiful smile ever) > conni60640@... > > Our website: _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 > > **************Check out smokin’ hot deals on laptops, desktops and more from > Dell. Shop Deals > (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol? redir=http://ad.doubleclick.net/clk;209513277;31396581;l) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 HI ALL! BETH HERE, I WANTED TO THANK KATHERINE FOR HER REPLY. I HAVE ONLY HAD 1 SURGERY IN AUG. OF 06 BUT HAD MANY COMPLICATIONS. MY ORIGINAL SCAR FROM MY SPINA BIFIDA OPENED BACK UP FROM AN INFECTION AND IT TOOK 8 1/2 MONTHS TO HEAL, I LOST SOME FEELING IN MY FEET FROM THE NERVES BEING TOUCHED. MY DR. SAID THAT MY NERVES WERE ALL TANGLED TOGETHER AND WRAPPED AROUND MY SPINAL CORD SO FOR HIM TO REMOVE SOME SCAR TISSUE HE HAD TO MOVE SOME NERVES. IF ANYONE CAN GIVE ME MORE ADVICE ON WHERE TO TURN TO NEXT I WOULD APPRECIATE IT. THANK YOU ALL FOR LISTENING. BEST WISHES TO YOU ALL, BETH I have had 3 de-tethering surgeries and each time (no matter what type of surgery one has, scar tissue is left behind -- how much? matters on where, what type of surgery is performed.) After my 3rd de- tethering (of which the Nsg rushed through, I might add) I was left with severe nerve damage to my right foot & calf. I now cannot sense pain in my right foot or feel or tell if my toes are up or down etc. With regard to your current Nsg stating " no more surgery " I realize it's hard to hear and presents another " can of worms " but if you trust his opinion and surgical knowledge regarding TSC/SB .. I believe his recommendation to 'explore' pain management is a good one. For me thinking back it's just about the best 'quality of care' decision I made for myself. I had an initial consult in October 2006 but did not go back and become a patient of Dr. Delore (my pain doctor) until Jan 2007 -- when things became close to 'un- bearable.' I believe you asked what it's like? Well after your initial evaluation with the pain clinic you're referred to -- there will be the choice of what types of treatment interventions will help most. What I do know from my own experiences are that it's a process of trial & error. Perhaps you will start off with drug therapy and then pair that with yoga, gentle stretching, and steroid injections to manage the neuropathy -- or maybe nerve blocks will work better -- only 'you' yourself will know. In my experience, pain management is a partnership between you & your doctor. It's important to speak up and let them know -- okay, this worked for about 3 weeks but then the medication began to wear off -- or this didn't work at all. I want to acknowledge your concerns and that you are heard & I understand and am very sorry you're going through all this. As far as a SCS helping nerve function -- if it works in the sense that it re-programs and dulls the abnormal pain signals -- it might in turn allow your nerves & muscles to relax and not fight with one another. Before considering a SCS you might try out a TENS Unit -- I for now would recommend getting a referral to PT -- as they can perform massage and myofacial massage that in my experience helps greatly with " stuck scar tissue adhering to nerves " -- hang in there and keep us posted. Where are you located? Are you in the US, Canada, UK, Europe? > > > > > > From: philaflyersfan1 <philaflyersfan1@ yahoo.com> > > Subject: DRS. APPT. > > To: tetheredspinalcord@ yahoogroups. com > > Date: Sunday, November 23, 2008, 3:37 AM > > > > HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND > > I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, > > BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER > > SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE > > SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE > > TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING > > MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD > > TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT > > SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT > > TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR > > PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE SPINAL CORD > > STIMULATOR ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH > > THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF > > SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW > > WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY > > APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 I AM LOCATED JUST OUTSICE OF PHILADELPHIA PA. > > > > From: philaflyersfan1 <philaflyersfan1@ yahoo.com> > > Subject: DRS. APPT. > > To: tetheredspinalcord@ yahoogroups. com > > Date: Sunday, November 23, 2008, 3:37 AM > > > > HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND > > I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, > > BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER > > SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE > > SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE > > TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING > > MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD > > TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT > > SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT > > TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR > > PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE SPINAL CORD > > STIMULATOR ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH > > THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF > > SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW > > WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY > > APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Beth, I did look through the archives and found the name, Debbie ... but now that I recognize the name I think she is the gal who recently took her name off this list. I think her last name is Gajdosik. Too bad. Dee To: tetheredspinalcord From: conni60640@... Date: Sun, 23 Nov 2008 15:08:23 -0500 Subject: Re: DRS. APPT. In a message dated 11/23/2008 2:40:44 P.M. Eastern Standard Time, deeinbc@... writes: Beth, sorry I can't find the name of the gal who had the spinal implant. If you log onto the group website and go into message section, there is a search option. Here is what I found searching " stimulator " to see who had it done: _http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662_ (http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662) This is a great option when you know the group has discussed something in the past but can't remember specifics, so I use it all the time with my various groups 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, 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 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful smile ever) conni60640@... Our website: _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 **************Check out smokin’ hot deals on laptops, desktops and more from Dell. Shop Deals (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol?redir=http://\ ad.doubleclick.net/clk;209513277;31396581;l) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 Hi Beth, I just sent his email address to . I'll write him tonight to ask that he get in touch with you. He's had a SCS for several years and has LMC too. V > > > > In a message dated 11/23/2008 2:40:44 P.M. Eastern Standard Time, > > deeinbc@ writes: > > > > Beth, sorry I can't find the name of the gal who had the spinal > implant. > > > > If you log onto the group website and go into message section, > there is a > > search option. Here is what I found searching " stimulator " to see > who had it > > done: > > > > > _http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > _ > > > (http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > ) > > > > This is a great option when you know the group has discussed > something in > > the past but can't remember specifics, so I use it all the time > with my various > > groups > > > > > > 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, 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 3.5cm lift, SUA, GI > reflux, > > DGE/gastroparesis, mild swallowing dysphagia, eating issues and > the most > > beautiful smile ever) > > conni60640@ > > > > Our website: _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 > > > > **************Check out smokin’ hot deals on laptops, desktops > and more from > > Dell. Shop Deals > > (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol? > redir=http://ad.doubleclick.net/clk;209513277;31396581;l) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Hi Beth and , If you get a hold of I would be interested in his opinion. I am now thinking about a SCS. Thanks. Re: DRS. APPT. Hi Beth, I just sent his email address to . I'll write him tonight to ask that he get in touch with you. He's had a SCS for several years and has LMC too. V > > > > In a message dated 11/23/2008 2:40:44 P.M. Eastern Standard Time, > > deeinbc@ writes: > > > > Beth, sorry I can't find the name of the gal who had the spinal > implant. > > > > If you log onto the group website and go into message section, > there is a > > search option. Here is what I found searching " stimulator " to see > who had it > > done: > > > > > _http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > _ > > > (http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > ) > > > > This is a great option when you know the group has discussed > something in > > the past but can't remember specifics, so I use it all the time > with my various > > groups > > > > > > 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, 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 3.5cm lift, SUA, GI > reflux, > > DGE/gastroparesis, mild swallowing dysphagia, eating issues and > the most > > beautiful smile ever) > > conni60640@ > > > > Our website: _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 > > > > **************Check out smokinâ?T hot deals on laptops, desktops > and more from > > Dell. Shop Deals > > (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol? > redir=http://ad.doubleclick.net/clk;209513277;31396581;l) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 I had a scs placed about four years ago. I think I wanted it to work more than it actually worked. It does make you (or me at least) think about the buzzing it gives you more than the pain at times. It did not help truly with my pain and I had to have it removed because my body rejected the part they placed under my skin. I have not had the same rejection problems with the pump because (they think) of the different materials they're made of. I never really liked the sensation it gave and I should have known better because tens units made me feel the same way ... If you get it, make sure it really does help you, that you can tolerate/like the buzzing sensation it gives, and that you really want this device. There are other options.... If anyone has any other particular questions please email me either offlist or via the list and I'll do my best to answer. Kathy Re: DRS. APPT. Hi Beth, I just sent his email address to . I'll write him tonight to ask that he get in touch with you. He's had a SCS for several years and has LMC too. V > > > > In a message dated 11/23/2008 2:40:44 P.M. Eastern Standard Time, > > deeinbc@ writes: > > > > Beth, sorry I can't find the name of the gal who had the spinal > implant. > > > > If you log onto the group website and go into message section, > there is a > > search option. Here is what I found searching " stimulator " to see > who had it > > done: > > > > > _http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > _ > > > (http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > ) > > > > This is a great option when you know the group has discussed > something in > > the past but can't remember specifics, so I use it all the time > with my various > > groups > > > > > > 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, 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 3.5cm lift, SUA, GI > reflux, > > DGE/gastroparesis, mild swallowing dysphagia, eating issues and > the most > > beautiful smile ever) > > conni60640@ > > > > Our website: _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 > > > > **************Check out smokinâ?T hot deals on laptops, desktops > and more from > > Dell. Shop Deals > > (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol? > redir=http://ad.doubleclick.net/clk;209513277;31396581;l) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 has given me Chip's information -- anyone interested please contact me off list and I shall give you his contact information. I do not feel right, posting it live. > > > > > > In a message dated 11/23/2008 2:40:44 P.M. Eastern Standard Time, > > > deeinbc@ writes: > > > > > > Beth, sorry I can't find the name of the gal who had the spinal > > implant. > > > > > > If you log onto the group website and go into message section, > > there is a > > > search option. Here is what I found searching " stimulator " to see > > who had it > > > done: > > > > > > > > _http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > > _ > > > > > (http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > > ) > > > > > > This is a great option when you know the group has discussed > > something in > > > the past but can't remember specifics, so I use it all the time > > with my various > > > groups > > > > > > > > > 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, 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 3.5cm lift, SUA, GI > > reflux, > > > DGE/gastroparesis, mild swallowing dysphagia, eating issues and > > the most > > > beautiful smile ever) > > > conni60640@ > > > > > > Our website: _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 > > > > > > **************Check out smokinâ?T hot deals on laptops, desktops > > and more from > > > Dell. Shop Deals > > > (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol? > > redir=http://ad.doubleclick.net/clk;209513277;31396581;l) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Hi, I would be happy to contact you off list but I must admit my ignorance. I don't know how to do that. It doen't show your personal e-mail. If I hit reply to an individual it does not show anyones name. Should I give my e-mail address here? I have been warned not to for security??? But how else would you know other's e-mail info. I am confused. Sorry. Re: DRS. APPT. has given me Chip's information -- anyone interested please contact me off list and I shall give you his contact information. I do not feel right, posting it live. > > > > > > In a message dated 11/23/2008 2:40:44 P.M. Eastern Standard Time, > > > deeinbc@ writes: > > > > > > Beth, sorry I can't find the name of the gal who had the spinal > > implant. > > > > > > If you log onto the group website and go into message section, > > there is a > > > search option. Here is what I found searching " stimulator " to see > > who had it > > > done: > > > > > > > > _http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > > _ > > > > > (http://health.groups.yahoo.com/group/tetheredspinalcord/message/19662 > > ) > > > > > > This is a great option when you know the group has discussed > > something in > > > the past but can't remember specifics, so I use it all the time > > with my various > > > groups > > > > > > > > > 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, 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 3.5cm lift, SUA, GI > > reflux, > > > DGE/gastroparesis, mild swallowing dysphagia, eating issues and > > the most > > > beautiful smile ever) > > > conni60640@ > > > > > > Our website: _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 > > > > > > **************Check out smokinâ?T hot deals on laptops, desktops > > and more from > > > Dell. Shop Deals > > > (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol? > > redir=http://ad.doubleclick.net/clk;209513277;31396581;l) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Beth, When surgery is no longer a feasible option, its time to see out care for the remaining problems, whether they be urology, pain, bowel, mobility, etc. My advice is to go to a physiatrist (also called " physical medicine and rehabilitation). They are kind of like a PCP for disability. They are good at handling the pain mgmt issues as well as many mobility issues. They will refer you to any other necessary MDs - PT, OT, vendor to get any necessary DME items, urologist, etc. I wish you the best. Jenn From: tetheredspinalcord [mailto:tetheredspinalcord ] On Behalf Of hollygolightly1916 Sent: Sunday, November 23, 2008 8:57 PM To: tetheredspinalcord Subject: Re: DRS. APPT. HI ALL! BETH HERE, I WANTED TO THANK KATHERINE FOR HER REPLY. I HAVE ONLY HAD 1 SURGERY IN AUG. OF 06 BUT HAD MANY COMPLICATIONS. MY ORIGINAL SCAR FROM MY SPINA BIFIDA OPENED BACK UP FROM AN INFECTION AND IT TOOK 8 1/2 MONTHS TO HEAL, I LOST SOME FEELING IN MY FEET FROM THE NERVES BEING TOUCHED. MY DR. SAID THAT MY NERVES WERE ALL TANGLED TOGETHER AND WRAPPED AROUND MY SPINAL CORD SO FOR HIM TO REMOVE SOME SCAR TISSUE HE HAD TO MOVE SOME NERVES. IF ANYONE CAN GIVE ME MORE ADVICE ON WHERE TO TURN TO NEXT I WOULD APPRECIATE IT. THANK YOU ALL FOR LISTENING. BEST WISHES TO YOU ALL, BETH I have had 3 de-tethering surgeries and each time (no matter what type of surgery one has, scar tissue is left behind -- how much? matters on where, what type of surgery is performed.) After my 3rd de- tethering (of which the Nsg rushed through, I might add) I was left with severe nerve damage to my right foot & calf. I now cannot sense pain in my right foot or feel or tell if my toes are up or down etc. With regard to your current Nsg stating " no more surgery " I realize it's hard to hear and presents another " can of worms " but if you trust his opinion and surgical knowledge regarding TSC/SB .. I believe his recommendation to 'explore' pain management is a good one. For me thinking back it's just about the best 'quality of care' decision I made for myself. I had an initial consult in October 2006 but did not go back and become a patient of Dr. Delore (my pain doctor) until Jan 2007 -- when things became close to 'un- bearable.' I believe you asked what it's like? Well after your initial evaluation with the pain clinic you're referred to -- there will be the choice of what types of treatment interventions will help most. What I do know from my own experiences are that it's a process of trial & error. Perhaps you will start off with drug therapy and then pair that with yoga, gentle stretching, and steroid injections to manage the neuropathy -- or maybe nerve blocks will work better -- only 'you' yourself will know. In my experience, pain management is a partnership between you & your doctor. It's important to speak up and let them know -- okay, this worked for about 3 weeks but then the medication began to wear off -- or this didn't work at all. I want to acknowledge your concerns and that you are heard & I understand and am very sorry you're going through all this. As far as a SCS helping nerve function -- if it works in the sense that it re-programs and dulls the abnormal pain signals -- it might in turn allow your nerves & muscles to relax and not fight with one another. Before considering a SCS you might try out a TENS Unit -- I for now would recommend getting a referral to PT -- as they can perform massage and myofacial massage that in my experience helps greatly with " stuck scar tissue adhering to nerves " -- hang in there and keep us posted. Where are you located? Are you in the US, Canada, UK, Europe? > > > > > > From: philaflyersfan1 <philaflyersfan1@ yahoo.com> > > Subject: DRS. APPT. > > To: tetheredspinalcord@ yahoogroups. com > > Date: Sunday, November 23, 2008, 3:37 AM > > > > HI ALL! BETH HERE, I WENT TO SEE MY NEUROSURGEON ON TUES. NOV. 18TH AND > > I DID NOT RECIEVE PROMISING NEWS. HE TOLD ME THAT I HAVE RETETHERED, > > BUT HE DOES NOT FEEL COMFORTABLE WITH WITH PUTTING ME THROUGH ANOTHER > > SURGERY, BECAUSE HE BELIEVES THAT IT WOULD NOT BE HELPFUL TO ME. HE > > SAID THAT MY NERVES ARE ALL SURROUNDED BY SCAR TISSUE, AND THAT IF HE > > TRIED TO REMOVE ANY OF IT THAT THERE IS A 10 TO 20% CHANCE OF ME LOSING > > MORE NEUROLOGICAL FUNCTION AND LESS THAN A 50% CHANCE THAT IT WOULD > > TAKE AWAY MY HIP & LEG PAIN. HE IS SENDING ME TO A PAIN MANAGEMENT > > SPECIALIST TO SEE ABOUT A SPINAL CORD STIMULATOR (WHICH I DO NOT WANT > > TO HAVE DONE). MY QUESTION IS HAS ANYONE HAD A SPINAL CORD STIMULATOR > > PUT IN BECAUSE SURGERY WAS TO RISKY, AND I KNOW THAT THE SPINAL CORD > > STIMULATOR ONLY HELPS WITH THE PAIN SO, HOW ELSE CAN I BE HELPED WITH > > THE NEUROLOGIAL PROBLEMS THAT ARE CAUSED FROM THE TETHERED CORD IF > > SURGERY IS TO RISKY? THIS HAS REALLY UPSET ME AND NOW I DON'T KNOW > > WHERE TO TURN. ANY ADVICE THAT YOU ALL CAN GIVE ME WILL BE GREATLY > > APPRIECIATED. THANK YOU ALL FOR LISTINING. BETH > > > > Quote Link to comment Share on other sites More sharing options...
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