spina bifida occulta anyone?

following on from the great discussion that resulted from my question last week about the flare (with a twist) of chronic abdomen/peritomeum symptoms that set in last october, am prepping for the next stage of investigations: on thursday i will see the gyn/urology physio on referral by my surgeon urologist. then i see urology, rheumatolology & immunology in march/april

unless someone asks, i'm not planning to use this post to go into the complex of chronic conditions that make up the typical pie chart of issues involved in my chronic abdo/pelvic/spine conditions (that was pretty much covered in the thread last week...these conditions involve a typically complex immune dysfunction set of specialties...over the past 30+ years, i've lifestyle managed agogo & been thoroughly investigate by neurology + gastroenterology + urology + gyn + immunology + rheumatology and given reasonable diagnoses + various successful procedures & ops + rehab regimes inc core stability/pelvic floor + pharmaceutical treatments, all of which have combined to help me spend the past 2 years in the least abdo/pelvic discomfort & pain i've had since my 20s)

now I just hope to find out whether anyone else here has been living with/managing spina bifida occulta (and even better, if they have done so with ehlers danlos hypermobility) & lupus since birth? my version of SBO was diagnosed via imaging tests many years ago. My consultants found my lower back was affected structurally & neurologically. i'm intending to mention my SBO to the physio this week...and am just wondering if the effects of all this may be something that gradually reshape to hit us in new ways with age: i'm now 62 and discovering the joys (not!) that age can bring to what had been effectively managed, relatively stable chronic conditions. my impression is that finding anyone else here with SBO could be quite a stretch....but i won't know until i ask!

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  • Hi barnclown,

    Today might be your lucky day. I have Spina Bifida, Hypermobility Syndrome and Rheumatoid Arthritis. Not too dissimilar but not entirely the same.

    I was diagnosed with Spina Bifida around a month after birth. I have a rare presentation; a craniomeningocele which was obviously noticed as soon as I was born. In layman's terms, the back of my skull did not form correctly. My understanding is that there are 3 types with occulta being the most mild. Mine is in the middle. I've heard that with SB occulta, you may have back pain but otherwise, it is often an incidental finding. I am no expert though. I had to google to check I'd spelt 'craniomeningocele' correctly!

    I've not had any treatment, as such. My parents were encouraged to consider a skull reconstruction but, given my young age, they decided against it. I was monitored by a specialist hospital for some years and I developed normally. To be perfectly honest, I did not come out of it unscathed. My mum suffered very much as her first born did not "look normal" (although you can't tell now) and she watched and waited for me to do everything, so lived in a permanent state of anxiety. This has impacted on our relationship and she has a lot of anxiety about me and guilt as I was born just before it was known that folic acid reduces the risk.

    I had a spine MRI in 2014 for SI joint inflammation which found I have fused vertebrae, thought to be congenital. I had been unaware of it before but do wonder if it is linked. I get low back pain. Obviously it is related to my RA but inflammation is settled, so it shouldn't be causing pain.

    I don't include SB in terms of my general health management, as it does not appear to impact on my every day life. That said, my jaw joint has been badly damaged, probably partly due to my skull defect but RA helped it along. So, managing that pain is important as it's pretty intense. I have declined a jaw replacement, for now.

    I see a private osteopath and I've been referred again for NHS physio. I hope I can work on my lower back issues as it impacts on my hips in terms of referred pain. I see podiatry for my wonky, hypermobile ankles. I find the orthotics plus really good shoes very helpful. I have my RA meds. I take codeine, paracetemol and naproxen for pain management which is not totally ineffective....but not far off it! I'm loathe to try stronger pain meds as they are sedating and I work a busy job that involves a non-fuzzy brain.

    Sorry, you probably weren't expecting my life story and my ramble!!

  • Am glad you replied crashdoll! Am grateful for every detail you've given! Am just off to bed...happy to have this from you! Will reply tomorrow!

    πŸ€ Coco

  • I'm backπŸ€—...hello again, crashdoll....I do recall we've met on forum before!

    We have quite a lot in common...even worried mothers...am v much feeling for you & your mother. I hope your relationship has worked out for the better....

    my mother kept my infant onset lupus secret until very recently...and mine has had to come to terms with the internal reproductive organ defects & predispositions to rare cancers caused by the drug she took daily for months while bearing me (the notorious artificial oestrogen DES - diethylstilboesterol)...which made me infertile (she loves grandchildren) and, according to my consultants, tipped me over into the infant onset lupus & early onset immune dysfunction. We're good friends now...but until her 80s our relationship was very troubled, although I have always loved her and been proud of her, + never held anything of this stuff against her

    Your spina bifida is the generally more significant kind. Congratulations are due to you, your parents & medics for having managed it so effectively. I am in awe!

    How old are you now? And does lupus also feature in your list of diagnoses?

    Re my SBO: really, this post is to help me prep for this gyn/urology physio appt on Thursday which is to investigate the 4+ month flare of more severe symptoms than those of my usual chronic abdo/periteneum/lower GI symptoms. So far my medics think this is a complex matter with multiple causes (typical, right?!). I think we have agreed on several of these causes. Next I will bring up my SBO...

    many years ago, while investigating my chronic lumbar/sacral pain, consultants explained the more commonplace versions of SBO, but they also warned me that due to my ehlers danlos hypermobility + chronic neuro cerebral symptoms etc it appeared I am one of the few who are more severely affected by SBO (as with lupus, RA etc etc there are milder cases, and more severe cases) Here is a good link that outlines the sorts of things patients with my version of SBO complications deal with (this fits with my type of chronic multisystem stuff):


    As the years have passed, more of my chronic diagnoses have been linked to SBO: my feet deformities, my urological probs, and my bowel probs. Here I am, almost thoroughly diagnosed from top to toe at 62, with an A4 4 page closely typed doc in my wallet outlining all my Dx + Rx + procedures & ops + treatment plans + immediate family history + allergies etc. And now the conclusion does seem increasingly inescapable: my version of SBO does indeed seem to have proven at least somewhat more severe than it could've been. But I do have all this in perspective: thanks to the recovery of my infant onset lupus diagnosis 5-6 years ago, things are much better for me than they've been my whole life.

    What's important to me is that I understand my health profile & its quirks well enough to be able to hold my own in negotiations with the health system. i cope much better when i feel as if i more rather than less understand. so, some day I really do hope to meet up with someone coping with my version of SBO. this would help me alot to get my SBO in perspective. oddly enough, last week I discovered that a friend's newborn daughter has SBO...the poor infant is now in intensive care due to septicaemia because her gps underestimated the significance of SBO. the latest news is that her world class university hospital has her stable now...things are looking up for her and her very worried patients

    Uh oh, I've rambled on much longer than you...thanks for giving me this chance to think these things through "out loud": this is great prep for discussing this stuff with my medics

    Take care & good luck πŸ€πŸ€πŸ€πŸ€

  • Oh I do like a good ramble. ;) We have met before. I wonder if it was when I posted about my Autonomic Neuropathy? My gastro has suggested a re-test all of antibodies as I have symptoms of SLE but never a conclusive dx. My rheum is concerned that I am having an "autoimmune response" to Humira but I disagree, I've been like this for a while. My first rheum diagnosed inflammatory arthritis and queried seronegative SLE. He sent me for a second opinion but it was felt I have RA, maybe SLE overlap but it has never really been discussed much.

    I'm sorry to hear you've been affected by your spina bifida. I'm afraid my knowledge is really quite limited, based mostly on working with children with the most severe form. My biggest issues were uncertainly surrounding my development which fortunately, was completely normal. Given this, I rarely gave it a second glance.

    I have a very good relationship with my Mum but she worries, oh does she worry! She blames herself for all that has happened to me. I also suffer very mildly with another genetic disease called Ectodermal Dysplasia. Some of the symptoms (skin and hair) mimic SLE and vice versa. It's rare and I'm unlikely to find any doctor who would be able to pick things apart. Being a carrier for ED is my main concern really. I have ruled out having my own biological children which I suspect she feels responsible for and guilty about but genetics are what they are.

    I am 27 years old and boy do I feel every one of those. The worst thing for me is the multitude of complex issues and the lack of joined-up care. I guess you can relate to that. My genetic issues are so, so rare. Even by SB is rare. To give context, 1 in 20 have SBO but only 1 in 5000 have a cranial meningocele and mine is an unusual presentation within that, so I guess I'll never know the full extent. I've just had a cervical spine MRI and I expect it to show abnormalities but I think they will be congenital, as opposed to caused by my inflammatory disease.

    Sorry, I've also rambled. I don't talk much about the real complexities of my health, mostly as it is difficult and upsetting due to knowing that I probably can't have my own children.

    Take care :) x

  • Your reply is wonderful...and I think you are wonderful! It's great your here & I'm so glad to meet you.

    For all the inevitable worry, both your mother's love for you and her happiness that you're here are ginormous, I'm sure.

    You are so young, yet so wise. I have a feeling that although you mayn't have children yourself, you are finding, and will continue to find, beautiful, meaningful ways to connect with youngsters throughout your life.

    Thanks for considering my condition with me - I'm glad I posted & that you replied


  • Thank you for your kind words. :) I lurk on here and you are always so wise and generous with your words. You have an awful lot to deal with but you clearly have a great attitude which is often half the battle. I've always said that the people who moan the least and the ones who would deserve to moan the most! You certainly prove my point.

    I hope it helped to type it through. Sometimes it helps to have an ear, someone who can understand parts, even if I cannot relate to all that you go through.

    Take care and have a good evening x

  • πŸ€—πŸ˜‰πŸ˜˜

    Definitely has helped lots: to meet you + to put all that in words


  • One article I read said that folic acid deficiency is one cause of spinal bifida occulta. Do you have any of the symptoms here?


    If so you might have some hope for treatment in finding out where the deficiency is coming from.

  • Good point. Yes, that's my understanding too. But I hadn't thought about folic acid deficiency being relevant to me now....so, many thanks! I will check through my blood results print outs + definitely ask about this at my lupus clinic next month

    Immunoglobulins G/A/M, lymphocytes (certain types), complements 3/4 & heamatocrit are consistently low in my blood (from before I began daily immunosuppression 5 years ago). My consultants say there is no clear evidence i'm celiac, but I do function best when I avoid processed grains. Certain makes of rye & oat products do suit me though and are regular elements in my daily diet...as well as the right type of fruit & veg....but with my chronic multisystem issues + all my meds, maybe I need supplementation....hmmmmπŸ€”

    Am glad you replied


  • Happy to help. Read about methylenetetrahydrofolate reductase deficiency. This is a relatively new disorder that causes people to need a special form of folic acid that isn't available from food, only supplements.


  • Oh my yes, I do know about MTHFR! That's a v good link, thanksπŸ˜‰

    Just checked my daily vit B complex cap contents: 400yg folic acid = 200% EC RDA....have been on this for years...I will look more closely at all this though

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