meningocele

[sarahjenn]

I am 37 and was recently told I have a meningocele cyst.  It is 11cm by 6 cm starting at my l4,  does anyone have any info on this surgery?

[sarahjenn]

Thanks for the support!  :)

[selmaS]

I am glad u have a supportive DH...and I pray u have a good Dr visit in Aug...please let me know how it goes : )

"selma"

[sarahjenn]

I was on Liryca at first but it made me very tired. I used to be on Topamax but lost my word retrival memory as well as other bad side affects. Well hopefully the gabapentine works until I see the NS in August.  Until then I hope to just function.  I have 3 little ones at home so its tough.  I found out about my cyst when I was pregnant.  But my husband is very supportive and has really pulled up his socks to help arond the house and with the kids.

Be well
Sarah

[selmaS]

  TC can be hidden from view on MRI, and  there is other testing that is done is addition....this is y it is called occulta tethered cord, occulta means hidden.MRI is only one tool, but not the defining one for this condition.

Sorry I didn't read that as L I saw it as a 1...lol....gotcha now.I figured it was that general area.

I still have some issues, and am waiting on my TC release surgery....I do have bladder issues as a result..and lower back issues as well as leg issues...lately my sacral pain is what has been  my biggest pain....I tried gabapentin, but it affected my bowel which at the time I was told I had IBS...not sure if that was the case or not, but recently I started on a probiotic and am seeing improvement with that.

I am now on TOPAMAX...it helps some with my HA pain...but not all of it....and it all depends on my activity.....so, as long as I modify my activities and do things I know that will not trigger a flare I am ok.

Thanks for asking : )

I actually had the cyst and it popped while I was doing pilates...I had no idea that I had chiari , TC or ne of it at the time....just thought I was out of shape...and had some things I just could never do, my DD thought this was something I should be able to handle...we both heard it pop...ouch....

  From others that took gabapentin they reported that it worked at the start, but peaked and then stopped working.....so if that does happen do not be surprised.....

  But we r all diff....so who knows.

    "selma"

[sarahjenn]

The MRI results were able to identify that there is no TC  no they did not look for Chiari I will ask when I meet the NS.  The cyst is pressing on the nerves, they can tell by the MRI

L2/3 means lumbar 2 and 3 S1 is refering to Sacral.

My pain is getting worse by day I am taking gabapentine to help.  I think it does a bit.  I was taking lyrica but it made me too sleepy.

I read your BIO how are you feeling now.  Has any of your pain subsided?

Sarah

[selmaS]

  So they did test u for the TC and chiari?.....

  What about a syrinx, since u already have a cyst....the reason I ask is I also had a cyst and I have TC.....I also have a sacral dimple....

The pain u describe is common for TC and again y I keep asking.....the only other thing is if the cyst is pressing on a nerve.

The osteocartiaginous bars is  Relating to, or composed of, both bone and cartilage. ...

Not sure what they mean by 12/3 and 15/s1.....is that all it says?

   "selma"

[sarahjenn]

Thanks so muc for your response.  I do not have a tethered cord.  I am seeing a secon NS next month the first one diagnosed it and refered me to someone else.

I am in constant pain, both my leg and back.  It gets worse by day.  I beleive they called it a intrasacaral meningocele.  I also have postier osteocartiaginous bars at the l2/3 and l5/s1 also not too sure what that means.  I am hoping to get more info before I see the doc.

[selmaS]

Meningocele
The least common form of spina bifida is a posterior meningocele (or meningeal cyst).
In a posterior meningocele, the vertebrae develop normally, however the meninges are forced into the gaps between the vertebrae. As the nervous system remains undamaged, individuals with meningocele are unlikely to suffer long-term health problems, although there are reports of tethered cord. Causes of meningocele include teratoma and other tumors of the sacrococcyx and of the presacral space, and Currarino syndrome, Bony defect with outpouching of meninges....

I would suggest u see a chiari NS as they deal with tethered cord and can ***** what is going on....since this is a possibility u may want to get a few opinions. Being in Canada u may have to go privately to get the info u want.....

  This being a form of spina bifida u want to research as much as possible...may I ask do u have mush pain or discomfort from the cyst?

    "selma"