Ask The Expert Spina Bifida Occulta January 2023

[@joannehillier3872]

I have SBO and am symptomatic with a fatty lump, a tethered cord and a split. My feet had operations as a young child because they turned inwards. My back had repeated physio throughout my life. But my back problems weren’t discovered until my pain worsened and my bowel was affected. I was 43 years old when this was diagnosed. I was referred to a neurosurgeon who determined that an operation is not on the cards until and if my symptoms worsen. I have good days and bad days, but when I have pain, it’s the worst and most debilitating pain .

[@sheenasmiley1]

Are you on disability now? I’m having the same problem, I’m 40. This pain is horrible.

[@Littlemagpie2487]

What do you do when your general doctor refuses to recognise that SBO has any symptoms at all. I’ve had back pain since I was 24 and I’m 51 now. I now have severe facet joint arthritis and spinal stenosis and chronic pain in both legs which seriously impacts my mobility. Yet no one is taking me seriously and I have been unable to get a referral to a specialst

[@glenross9467]

i have the same thing that you have. only found out in my early 20’s. didn’t get much pain until couple years ago. certain things seem to bring it on then feels like my whole back has seized up. i understand what you mean about doctors not taking it seriously..They always say most don’t get pain with it but what about the people who do?

[@RiceaxeGaming]

I've had backpain since I was 13, now 31. I have exactly the same Problems. Stenosis, joints hurting, especially the knees, mobility impacted. After about 500meter my whole Shirt is wet. I think its musclestress my back is killing me...I think my stenosis got worse. Often my Hands and Feet go numb. Talking hot showers sometimes is the only thing that gives temporary relief. My doc refuses to send me to physiotherapist, stating its pointless. I'am very tired and unhappy. I had to quit many Jobs because of my condition. Im desperate.

[@MUZLIM1234]

Do you use a walker ,wheelchair,or cane or back brace? Can you stand and walk? Maybe once they see it’s very serious they’ll send you to specialist because I’m in my early 30’s and have spina bifida but I can’t walk stand or even sit too long.

[@Littlemagpie2487]

@@MUZLIM1234I use a walker and a cane at times. Since that post I’ve had mri on my spine which showed narrowing in several places so they have acknowledged the stenosis and nerve problems. But I’ve also been diagnosed with hypermobility and they have theorised that my hypermobility is causing many of the issues in my spine, hips, SI joints. They are still refusing to say that SBO has impacted my spine in any way. They’re saying it has no impact and most people don’t even know they have it

[@danielleaustin4698]

Thank you

[@anadelacurz8665]

I have spinal bennifer you talkin about and I have trouble walking and I have my spine is getting worse different I can do I constantly have to use a wheelchair run the house and outside

[@perrywolfspirit]

I have spina bifida occula. I've had severe lower back pain my whole life. But now I have severe arthritis in my lower back, and the pain is unbearable. What kind of options do I have to help with the pain?

[@adelahumphries1135]

Ask your Dr to put you on Liquid Morphine I take 2.5 ml and It relieves the pain down my right leg 🦵

[@LemonPuf]

My son was born with a sacral dimple. As he has grown he’s been left with 3 small circular dents just above his butt crack. They look like small bruises and form a triangular shape. He’s been suffering with back pain as a teenager and now as an adult. Pins and needles and leg weakness. On and off he’s had urinary retention.

[@AmanpreetKaur-yz7um]

hello mam/sir.... did your son had any hair or lump on the sacral dimple at the time of birth?

[@LemonPuf]

@@AmanpreetKaur-yz7um hi. No he had no hair or lump there.

[@AmanpreetKaur-yz7um]

@@LemonPuf okay thanks a lot ....my daughter also has dimple between her hips...Does your son has circular dents or bruise which you have mentioned at the time of birth?

[@LemonPuf]

@@AmanpreetKaur-yz7um when he was born he had a small hole in between the top of his butt cheeks and this has gone but is left with 3 shallow dents that are circular, but those circular dents form a triangular shape (each dent being a point of the triangle shape) - if that makes sense.

[@AmanpreetKaur-yz7um]

@@LemonPuf thanks a lot 🙏

[@blackbearhomestead]

Would MTHFR give way to this diagnosis?

[@SuperSky079]

My new born daughter have spina bifida occulta we did MRI now we are going to consult with neurosurgeon, she had a hole in her back when she was born...

[@Bhavna_Verma]

Helo my son is also born with this

[@sandradavis9882]

@@Bhavna_Verma, Usually when a child is born with a hole in their back it is not Spina Bifida Occulta, it is Spina Bifida.

[@Bhavna_Verma]

@@sandradavis9882 what is the treatment

[@shaynerodney6705]

Why isn't the "expert" answering these questions in the comments?

[@MUZLIM1234]

Because she isn’t your doctor everyone’s case is different why would she

[@microjyothi148]

Hi this is jyothi, my daughter born with spina bifida, now she is studying 9 th class, she has neurogenic bloder she want to do CIC every 3 hr, can you give you valuable suggestions

[@alisonpoh7596]

Does it mean that Laceys healing now ...being able to walk etc will not be permanent

[@FergbyFive]

Why isn’t the PDF available for download in the description?

[@SBAOrg]

Please click here for the PDF - www.spinabifidaassociation.org/wp-content/uploads/SBO-August-2022.pdf

[@godisgoodallthetime7622]

I have SBO. My mass measures 67 cm. It's destroyed my spine. I'm losing vertebrae. It's from T12 to L5. Some are hollow. It's large enough to flatten my right kidney. I have NF (neurofibromatosis). Severe scoliosis. My question's can SBO cause neurofibromatosis?

[@AkmalAbduholuqov]

Salom bu kasallikda bõy õsmay qolishi mumkinmi meni qizimga SBO VS1 vaVS4 tashxisi qõyilgan oyoģi oģrib ôzi 5 dan oshsa ham 3 yoshga õxshab qolgan

[@adelahumphries1135]

Hi do people with SBO normally have severe weight problems later on In life or does It depend on how active you are?

[@MUZLIM1234]

I did because we can’t walk or stand too much yet I eat like a regular person however I can’t eat like a regular person because I hardly move all day. I had this problem since I was a child now I have to get weight loss surgery

[@AbdulKhan-zc5mx]

Hello my daughter is Spina bifida my daughter both legs no moment please help me

[@SuperSky079]

I have a question, my daughter have spina bifida occulta she is one month old , MRI showing tethered cord , neurosurgeon saying she need surgery I want to ask is it 100% safe to do this surgery. Or is there any risk ? Can she overcome this tethered cord without surgery?

[@lalithakumari2183]

Same my daughter also same occulta tethered cord surgery safe or not plzz rply me

[@Bhavna_Verma]

@@SuperSky079 which neurosurgeon you have consulted

[@Bhavna_Verma]

@@lalithakumari2183 which neurosurgeon you have consulted plz help me my son has also this