Anyone dealing with a pseudomeningocele? My 15 year old daughter had decompression with duraplasty by a top NS at a top children’s hospital on April 23. A follow up Catscan shows a pseudomeningocele that the surgeon said is common and should resolve on its own.
Obviously I am freaking out a little especially since she just recovered from a VERY UNCOMFORTABLE bout with aseptic meningitis. I would appreciate knowing if this complication does resolve by itself.
Thanks, JoAnne
Hi Susan! So sad to hear you are going through a tough time. I will check out the discussion thread on PM (my new abbreviation). What kind of patch did you have? My daughter’s is bovine pericardium and I wonder if there’s a link. She doesn’t have that awful meningitis headache anymore and is on Motrin as needed. They said she may need a shunt if the PM gets too big. It looks like a small swelling under her incision, not too noticeable. What was the shunt procedure like? Everyone has been so supportive on this forum. I am so glad I found you!
Take care, JoAnne
Susan J said:
I had a very large psuedomeningeocele. I had to have mine tapped as an emergency, and then shunted. This didn’t work so a year later I had to have my patch replaced to fix the CSF leak. There is another discussion thread that would provide some information. There are several of us that also have had a psuedomeningeocele. Read those post and then ask questions and we will try to answer.
I’ll find the discusion thread and bring it to the top of the discussion list. Don’t be afraid after reading these posts. It may be possible for the psuedomeningeocele to resolve itself. I think it all depends on its size. My psuedomeningecele was resolved with surgery. I was doing great until I hit my head. Now the psuedomenigneocele is back. I’m still in the process of finding out what is going to be done.
Susan J
Hi Jo,soory to hear your daughter has this terrible thing! I too have developed a puesdomeningcele with poor csf flow.Does she suffer with postional headaches too? I had my decompression surgery in Nov 2011 and had a CINE MRI in March which confirmed it,I too also had aseptic meningitits for 2 mths post op,I wonder if there is a connection between the two? from what Ive read,I think they give it a couple of months to resolve and if not then they operate.Iam seeing the NS tomorrow to see what he is going to do,just hope he doesnt leave it,cant stand the headaches and pressure at the back of my head.Let me know how she is Denise x
Hi Denise!
So sorry you have the PM! The doctor told us the inflammation from the meningitis helps the patch heal. Go figure! Is yours very noticeable? Is there a lump at the incision site? Good luck at the doctors and keep me posted ! My daughter isn’t complaining of her headaches now and is eating well. We see the surgeon on Wednesday and it can’t come soon enough!
Take care, JoAnne
Denise said:
Hi Jo,soory to hear your daughter has this terrible thing! I too have developed a puesdomeningcele with poor csf flow.Does she suffer with postional headaches too? I had my decompression surgery in Nov 2011 and had a CINE MRI in March which confirmed it,I too also had aseptic meningitits for 2 mths post op,I wonder if there is a connection between the two? from what Ive read,I think they give it a couple of months to resolve and if not then they operate.Iam seeing the NS tomorrow to see what he is going to do,just hope he doesnt leave it,cant stand the headaches and pressure at the back of my head.Let me know how she is Denise x
Hi Joalexa,the meningitis heal does not make sense at all!!!! I had it for 2 mths and it didnt repair mine.Are u seeing the NS this weds? do you think he will repair it? I have a slight swelling at the side of the incision that when I press I feel light headed.Has she had an CINE MRI to check the csf flow? I dont know if mines causing the csf blockage or not but I thought the whole point of the decompression surgery was to restore normal csf flow??? but mine hasnt?? even though the MRI showed there is evidence of adequate posterior decompression? its only very confusing,cant get my head around it at all.Best of luck for Weds,Ill have my fingers crossed for you that they sort it out for her Denise xx
Hi Denise,
I can't imagine having the meningitis for two months...you are amazing. The surgeon did say that the PM is a leak under the incision site and as long as it doesn't come through the stitches, it will resolve in a couple of months. Gee, I hope he knows what he's talking about! We go to see him on Wednesday, which can't come soon enough for us. What scares me is talk of a shunt (what! why!). We never even heard of a CINE MRI, but I will bring it up at our office visit.Please let me know what your surgeon says, and please do ask him if he's ever seen these PM's resolve on their own, as we've been told. Good luck!
Take care, JoAnne PS What kind of patch did you have?
Denise said:
Hi Joalexa,the meningitis heal does not make sense at all!!!! I had it for 2 mths and it didnt repair mine.Are u seeing the NS this weds? do you think he will repair it? I have a slight swelling at the side of the incision that when I press I feel light headed.Has she had an CINE MRI to check the csf flow? I dont know if mines causing the csf blockage or not but I thought the whole point of the decompression surgery was to restore normal csf flow??? but mine hasnt?? even though the MRI showed there is evidence of adequate posterior decompression? its only very confusing,cant get my head around it at all.Best of luck for Weds,Ill have my fingers crossed for you that they sort it out for her Denise xx
Hi Joalexa,mines not leaking through the incision but causing horendous headaches on standing,only eases when I lie flat.Iam not sure what patch he used,infact I dont think he even opened the dura,so why its leaking I dont know?! A cine mri looks at the csf flow through the brain,so with your daughter having the pusedomeningcele it will show if its causing any blockage.Why have they mentioned a shunt? is that incase in gets bigger? Denise x
Joalexa said:
Hi Denise,
I can't imagine having the meningitis for two months...you are amazing. The surgeon did say that the PM is a leak under the incision site and as long as it doesn't come through the stitches, it will resolve in a couple of months. Gee, I hope he knows what he's talking about! We go to see him on Wednesday, which can't come soon enough for us. What scares me is talk of a shunt (what! why!). We never even heard of a CINE MRI, but I will bring it up at our office visit.Please let me know what your surgeon says, and please do ask him if he's ever seen these PM's resolve on their own, as we've been told. Good luck!
Take care, JoAnne PS What kind of patch did you have?
Denise said:Hi Joalexa,the meningitis heal does not make sense at all!!!! I had it for 2 mths and it didnt repair mine.Are u seeing the NS this weds? do you think he will repair it? I have a slight swelling at the side of the incision that when I press I feel light headed.Has she had an CINE MRI to check the csf flow? I dont know if mines causing the csf blockage or not but I thought the whole point of the decompression surgery was to restore normal csf flow??? but mine hasnt?? even though the MRI showed there is evidence of adequate posterior decompression? its only very confusing,cant get my head around it at all.Best of luck for Weds,Ill have my fingers crossed for you that they sort it out for her Denise xx
I honestly don’t know how you have a CSF leak if you didn’t have a duraplasty. I emailed a New York Chiari doctor yesterday and he emailed back that the PM is not rare and that she is still early in the recovery process. He also said the PM usually does resolve on its own so I feel
a bit better about all this. We will know more after Wednesday but it was good to see my daughter be able to do 2.5 hours of schoolwork today. I sincerely hope you find relief from those awful headaches!
Take care JoAnne
Denise said:
Hi Joalexa,mines not leaking through the incision but causing horendous headaches on standing,only eases when I lie flat.Iam not sure what patch he used,infact I dont think he even opened the dura,so why its leaking I dont know?! A cine mri looks at the csf flow through the brain,so with your daughter having the pusedomeningcele it will show if its causing any blockage.Why have they mentioned a shunt? is that incase in gets bigger? Denise x
Joalexa said:Hi Denise,
I can’t imagine having the meningitis for two months…you are amazing. The surgeon did say that the PM is a leak under the incision site and as long as it doesn’t come through the stitches, it will resolve in a couple of months. Gee, I hope he knows what he’s talking about! We go to see him on Wednesday, which can’t come soon enough for us. What scares me is talk of a shunt (what! why!). We never even heard of a CINE MRI, but I will bring it up at our office visit.Please let me know what your surgeon says, and please do ask him if he’s ever seen these PM’s resolve on their own, as we’ve been told. Good luck!
Take care, JoAnne PS What kind of patch did you have?
Denise said:Hi Joalexa,the meningitis heal does not make sense at all!!! I had it for 2 mths and it didnt repair mine.Are u seeing the NS this weds? do you think he will repair it? I have a slight swelling at the side of the incision that when I press I feel light headed.Has she had an CINE MRI to check the csf flow? I dont know if mines causing the csf blockage or not but I thought the whole point of the decompression surgery was to restore normal csf flow??? but mine hasnt?? even though the MRI showed there is evidence of adequate posterior decompression? its only very confusing,cant get my head around it at all.Best of luck for Weds,Ill have my fingers crossed for you that they sort it out for her Denise xx