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Pseudomeningocele causing pain for over 2 years doctors wont repair

Hi I hope someone can advise etc. I had a 2nd op back in march 2016 for tethered cord and following post op I started have quite severe lower back pain and left leg pain and found it difficult to move bladder and bowel. After several months I found that each time i tried to pass my bowel the pain would spike and I would not be able to walk my head would either feel like it was pushing in when standing or exploding when laying down etc

Any ways after several MRIs and many months of wait my specialist explained I have a pseudomeningocele and this is causing the problem, each time im causing pressure by walking or standing too much and obviously when passing bowel the abdominal pressure causes the pseudo to to fill up as a small leak must form each time , this happens at least once a week and makes me cautious to go to the toilet.

My surgeon doesnt seem to want to do anything other than refer me to another surgeon for a internal electronic stimulator  which I don't particularly, I have congenital scoliosis and octave spinabifida and worry about other possible complications plus this will not fix the leak or the bad heads.

Anyone have any advice ? should this not be fixed ?
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Avatar universal
Just a little update . Not heard anything back from specialist but neurologist put me on topiramate which helps a little . Little concerned I'm getting clear liquid dripping out of my right nostril every so often . Sometime just a little drop sometime more.
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Hi...if you can try to get the liquid to drop onto a clean white tissue or paper towel....if a bullseye ring appears it is CSF fluid...and contact your Dr about it.
Hi many thanks for this tried but couldn't see any halo effect .

Been on a few support groups and someone with very similar issue got in touch with me and suggested I should get my inferior vena cava checked as my epidural venous plexus o something could be enlarged due to some obstruction or occlusion.

Going to see my doctor next week and ask about it .
Do keep us posted as to what you find out.
620923 tn?1452915648
COMMUNITY LEADER
Hi...sorry you are still dealing with this with no idea when you might get relief.
I do not know what kind of Dr you saw or if they are able to  help and why they do not refer you elsewhere if they can't....in this day and age with al the advances in medicine you would think something is possible to help.

I do not know what to suggest but possibly go to a different Dr for a second opinion.
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8 Comments
It was my neurosurgeon here in the UK .
Oh ok...I know it is not easy to just go to a different Dr over there....is the Dr listed with the Ann Conroy Trust?
I am unsure about that, not even sure how i would find out.
I will post  a  link to the list...just know this list has not been updated in a few years and it may not represent all Drs that are well informed and experienced with Chiari....but is a good place to start to research Drs.....and check if you Dr is on it.

https://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569
thanks for that, i cant see him on the list or anyone from my hospital on the list.
My understanding is the list was compiled to help those with Chiari find Drs experienced with Chiari.....we have also compiled a list for the US here on this forum,,,,,but I always say the list is not all inclusive and is not a referral nor an endorsement for those listed it is meant to be used as a tool to start researching Drs.....so your Dr not being on that list could indicate they are not  specialists in the field for Chiari and related conditions OR they were not added to the list when we got it. You will have to do a little research there,
Im trying to get a hold of my last few MRIs just in case I wish to go further a field . I will look into those doctors but i am going to write to my consultant to say i am unhappy and wish to have it repaired rather than have a stimulator put in.
Good Luck and do keep us posted on your progress.
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