syrinx cyst and AD

june · 06-12-2008, 03:08 AM

My daughter has been a quad for 6 years now. She is still on a ventilator. She can not sprint. Last january she had the baclofen pump put in. we were hoping that it wold help her spasm she gets in her chest. These spasms actually stop ventilation. after her baclofen placement lat Jan, she had AD sooo bad. 210/160 her heart rate was 230's. She then had her syrinx cyst drained again for the second time in 4 years. She did much better after that. She came home after 40 days in PICU. Well she has started spasming in the chest again. she desats to 80-85 even when she is on 8 liters of O2. She had a mylography done and it was unsuccesful. the die would'nt go 1/2 inch which indicated a blockage. so logically her neurosurgon (who is the only doctor who cares) and I are thinking the Cyst is back. Because of her increased spasm, body temp all out of wack (she has a body temp of 94.8 we warm her up and then 2 hours later its 104.), irregualr heart rate. He just doesnt know what to do. He want to do another lamenoctomy (however you spell it) So hear I am doing doctor work. Is it possible to prevent AD after another surgery? Who is a good Pediatric syrinx cyst Doc?HELP ME PLEASE!

SCI-Nurse · 06-12-2008, 09:37 PM

I would contact Shriner's Hospital for Children in Philadelphia and ask for Dr. Randy Betts. He may not be the right doc, but he can point you in the correct direction. He's a great guy and a super doc!
CKF

ThomasB · 06-14-2008, 08:49 AM

http://sci.rutgers.edu/forum/showthread.php?t=54489
What can be done? For many years, neurosurgeons have operated to shunt syringomyelic cysts, placing one end of a catheter into the cyst and the other end into the intrathecal space or into the pleural or peritoneal cavity. In about 80% of the patients, the shunt will clog up and the cyst will form again within a year or so. About 10 years ago, Barth Green and his colleagues started to remove the adhesive scar around the spinal cord to allow CSF to flow without placing a shunt. This was considered quite radical but they showed that this will significantly reduce or eliminate the syrinx 80% of the time without having to reoperate. Many surgeons who believe in the first theory, however, have continued to place a shunt at the same time they move the adhesions from the surrounding cord.

When should operations be done? If the syrinx is small, it may just stay that way. However, if the syrinx is enlarging (on sequential MRI) or is causing neuropathic pain and loss of function, it should be operated on sooner rather than later. The reason is because the neuropathic pain and function loss may become permanent if the syrinx is left too long (i.e. months). Untethering the spinal cord may also restore some function, particularly to the spinal roots that are tethered.

Who should do the surgery? A neurosurgeon should do the operation. Most neurosurgery departments should have an experienced spinal surgeon. It should be a surgeon who has done a significant number of cases and who understands that the goal of the surgery is to restore CSF flow around the spinal cord. The surgeon may place a shunt and remove adhesions at the same time.

http://sci.rutgers.edu/forum/showthread.php?t=71330
CONCLUSIONS: This alternative surgery resolved the pathologies provoking neurological deterioration by releasing the complete spinal cord at the level of the scar and the levels above and below it. It thus avoids myelotomies and the use of shunts and stents, which have a high long-term failure rate and consequent relapses. Nevertheless, this surgical procedure allows patients the chance to opt for any further treatment that may evolve in the future.

06-12-2008, 03:08 AM	#1
june Junior Member Join Date: Aug 2003 Location: costa mesa, ca Posts: 5	syrinx cyst and AD My daughter has been a quad for 6 years now. She is still on a ventilator. She can not sprint. Last january she had the baclofen pump put in. we were hoping that it wold help her spasm she gets in her chest. These spasms actually stop ventilation. after her baclofen placement lat Jan, she had AD sooo bad. 210/160 her heart rate was 230's. She then had her syrinx cyst drained again for the second time in 4 years. She did much better after that. She came home after 40 days in PICU. Well she has started spasming in the chest again. she desats to 80-85 even when she is on 8 liters of O2. She had a mylography done and it was unsuccesful. the die would'nt go 1/2 inch which indicated a blockage. so logically her neurosurgon (who is the only doctor who cares) and I are thinking the Cyst is back. Because of her increased spasm, body temp all out of wack (she has a body temp of 94.8 we warm her up and then 2 hours later its 104.), irregualr heart rate. He just doesnt know what to do. He want to do another lamenoctomy (however you spell it) So hear I am doing doctor work. Is it possible to prevent AD after another surgery? Who is a good Pediatric syrinx cyst Doc?HELP ME PLEASE!

Thread Tools
Show Printable Version Email this Page
Display Modes
Linear Mode Switch to Hybrid Mode Switch to Threaded Mode

06-12-2008, 09:37 PM	#2
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,512	I would contact Shriner's Hospital for Children in Philadelphia and ask for Dr. Randy Betts. He may not be the right doc, but he can point you in the correct direction. He's a great guy and a super doc! CKF

06-14-2008, 08:49 AM	#3
ThomasB Member Join Date: Sep 2007 Location: Sydney Australia Posts: 68	http://sci.rutgers.edu/forum/showthread.php?t=54489 What can be done? For many years, neurosurgeons have operated to shunt syringomyelic cysts, placing one end of a catheter into the cyst and the other end into the intrathecal space or into the pleural or peritoneal cavity. In about 80% of the patients, the shunt will clog up and the cyst will form again within a year or so. About 10 years ago, Barth Green and his colleagues started to remove the adhesive scar around the spinal cord to allow CSF to flow without placing a shunt. This was considered quite radical but they showed that this will significantly reduce or eliminate the syrinx 80% of the time without having to reoperate. Many surgeons who believe in the first theory, however, have continued to place a shunt at the same time they move the adhesions from the surrounding cord. When should operations be done? If the syrinx is small, it may just stay that way. However, if the syrinx is enlarging (on sequential MRI) or is causing neuropathic pain and loss of function, it should be operated on sooner rather than later. The reason is because the neuropathic pain and function loss may become permanent if the syrinx is left too long (i.e. months). Untethering the spinal cord may also restore some function, particularly to the spinal roots that are tethered. Who should do the surgery? A neurosurgeon should do the operation. Most neurosurgery departments should have an experienced spinal surgeon. It should be a surgeon who has done a significant number of cases and who understands that the goal of the surgery is to restore CSF flow around the spinal cord. The surgeon may place a shunt and remove adhesions at the same time. http://sci.rutgers.edu/forum/showthread.php?t=71330 CONCLUSIONS: This alternative surgery resolved the pathologies provoking neurological deterioration by releasing the complete spinal cord at the level of the scar and the levels above and below it. It thus avoids myelotomies and the use of shunts and stents, which have a high long-term failure rate and consequent relapses. Nevertheless, this surgical procedure allows patients the chance to opt for any further treatment that may evolve in the future.