Anyone have Tethered cord or Spina Bifida
Anyone have Tethered cord or Spina Bifida
This is my first post, so I apologize for the length. My 13yo son has SB and has dealt with progressive worsening penis pain aggravated mostLy by bowel movements and urinating for @2-3 years . He has to take enemas For BMs and uses a catheter to urinate but it’s MISERABLE for him Half the time . He just had his third tethered cord surgery in April and was pain free for About a month but it has come back with a vengeance. We are sooo sad, mad, disappointed and afraid he’s looking at a lifetime of pain. He has an extensive medical team and seeing pain clinic, urology, colorectal and neurosurgery. He’s had multiple pudendal nerve blocks that always give him 100% relief but it never lasts long. There’s discussion of him having a mace/mitrofanoff that would allow him to cath/urinate from the belly button and run enema solution into the belly button. There’s no guarantee it will stop his pain, but in theory in might . None of his doctors have seen an SB patient with such blatant pudendal nerve pain . It’s a BIG surgery. Anyone else here have Spina Bifida or tethered cord? Anyone have experience with MAce/mitrofanoff? We are so heartbroken so overwhelmed and exhausted. Thank you for listening and please add him to your prayers if you pray
Re: Anyone have Tethered cord or Spina Bifida
Hi Mdelu,
I'm so sorry to hear your son is going through all that.
Have he and you been able to find a comprehensive pain management doctor or palliative care?
I'm two years in without a diagnosis but after researching because no doctor can tell me what's wrong, I believe it's very likely I have congenital or neuromuscular scoliosis, some type of spina bifida with anorectal malformation and tethered spinal cord.
Have you and your son been able to find help / find adequate pain management? I know these things can be much more complicated and that can be extremely difficult, so I really empathize with your family.
I'm on a facebook group called something like Ehlers Danlos and Tethered Cord where people with severe (SB, arachnoiditis) and less severe presentations (TCS) will post.
There is some information on tethered cord surgeons. I'm not certain if they would know specifically about the mace procedure.
Sometimes people will give advice about bowel programs they use (I'm about to try a Vitamin C powder cleanse protocol because I loathe the idea of prescription medications for stomach/digestive issues and have found natural remedies are much gentler on my very sensitive bowels) and different modalities which helped them (i.e. visceral mobilization, Muldowney PT created specifically for patients with connective tissue disorders).
I know you didn't mention Ehlers-Danlos (EDS)
but there can often be a strong connection between EDS and a predisposition for developing chronic pain.
Sorry I can't answer your questions about the mace/mitrofanoff. I wonder if a facebook group for spina bifida patients with your son's specific version of SB may have more information on experienced doctors for this surgery and other people's experiences.
I have also found one or two spina bifida forums from googling online but haven't made any accounts.
Keeping you and your son in my thoughts. It's very challenging when every day is a battle to fight and I sincerely hope your son has been able to find at least some pain management which is helpful for him.
Warmest Wishes,
Melody
I'm so sorry to hear your son is going through all that.
Have he and you been able to find a comprehensive pain management doctor or palliative care?
I'm two years in without a diagnosis but after researching because no doctor can tell me what's wrong, I believe it's very likely I have congenital or neuromuscular scoliosis, some type of spina bifida with anorectal malformation and tethered spinal cord.
Have you and your son been able to find help / find adequate pain management? I know these things can be much more complicated and that can be extremely difficult, so I really empathize with your family.
I'm on a facebook group called something like Ehlers Danlos and Tethered Cord where people with severe (SB, arachnoiditis) and less severe presentations (TCS) will post.
There is some information on tethered cord surgeons. I'm not certain if they would know specifically about the mace procedure.
Sometimes people will give advice about bowel programs they use (I'm about to try a Vitamin C powder cleanse protocol because I loathe the idea of prescription medications for stomach/digestive issues and have found natural remedies are much gentler on my very sensitive bowels) and different modalities which helped them (i.e. visceral mobilization, Muldowney PT created specifically for patients with connective tissue disorders).
I know you didn't mention Ehlers-Danlos (EDS)
but there can often be a strong connection between EDS and a predisposition for developing chronic pain.
Sorry I can't answer your questions about the mace/mitrofanoff. I wonder if a facebook group for spina bifida patients with your son's specific version of SB may have more information on experienced doctors for this surgery and other people's experiences.
I have also found one or two spina bifida forums from googling online but haven't made any accounts.
Keeping you and your son in my thoughts. It's very challenging when every day is a battle to fight and I sincerely hope your son has been able to find at least some pain management which is helpful for him.
Warmest Wishes,
Melody