Aa
meningocele
Does anyone know about what a meningocele is and should I be concerned? Someone told me it was the same as a syrinx. I could use more information. I am afraid of going back to my neuro because he will want to do surgery again. Thanks Annie
COMMUNITY LEADER
ok...I will see if it says on the report, but I do not think so.....just mentions it was noticed.
it must be from birth....I did not have ne surgeries on my back...
"selma"
it must be from birth....I did not have ne surgeries on my back...
"selma"
Let me know where it is tethered and why. I'm interested to know. I know any kind of scar tissue can cause it or it could be tethered since birth from the ligament that runs along the spinal cord.
COMMUNITY LEADER
well...u do have a lot to offer and I am very glad u joined our forum.As soon as I know what the drs think they will tackle first I will post it here!
I hope u continue to be a part of our community.
Thanks
"selma"
I hope u continue to be a part of our community.
Thanks
"selma"
Yes I had the feet issues prior to the detethering also. It was so uncomfortable for me to try to sit with my feet on the floor straight. I always sat with them turned in and on the sides of my feet. My toes were drawn to where if I wanted to paint my toenails I would have to bend my toes back out to get to them! haha
I still have involuntary head movements/jerking at times. The surgery did nothing to fix that.
I still have involuntary head movements/jerking at times. The surgery did nothing to fix that.
COMMUNITY LEADER
...well I do not have spina bifida...so I have no idea....and the report did not mention where it was tethered.
All thru school I had issues with my legs...hurting and getting rock hard....I hated gym class.
I went thru early menopause...I went to gynos for yrs asking about my cycles...2x;s a month...first I was told it was intermitten bleeding....but it was exactly like a normal cycle...then I was told I was in perimenapause...???I also asked what could cause me to stated MP so early 36.........done by 38 ....and I was told to just accept it.
I also recently found out I ama DES daughter as I thought that was a factor...still not sure.
I have have so many UTI...I needed to be dilated because of the scar tissue......I strain to pass water.....
and as for feet issues....the balls of my feet always felt like thet were on fire....I tried all kinds of pads...even gel toe pads for ballet dancers......in less than a week this hard part of the ball of my foot wore a hole in the pad...I went to a foot dr and was dx with tarsel tunnel and had surgery.....now I am told I never had it....???
I also used to stand on the sides of my feet....sitting my feet would turn to the outside...roll until they were resting sideways.....when I got married and my MIL saw it she told me to stop doing it...I wasn't aware that I was.....
I have diff finding shoes that feel good....my feet always hurt.
I have also had tremors...mostly in my right hand....I first noticed it when I lift something and try holding it.....a glass of water...
All thru school I had issues with my legs...hurting and getting rock hard....I hated gym class.
I went thru early menopause...I went to gynos for yrs asking about my cycles...2x;s a month...first I was told it was intermitten bleeding....but it was exactly like a normal cycle...then I was told I was in perimenapause...???I also asked what could cause me to stated MP so early 36.........done by 38 ....and I was told to just accept it.
I also recently found out I ama DES daughter as I thought that was a factor...still not sure.
I have have so many UTI...I needed to be dilated because of the scar tissue......I strain to pass water.....
and as for feet issues....the balls of my feet always felt like thet were on fire....I tried all kinds of pads...even gel toe pads for ballet dancers......in less than a week this hard part of the ball of my foot wore a hole in the pad...I went to a foot dr and was dx with tarsel tunnel and had surgery.....now I am told I never had it....???
I also used to stand on the sides of my feet....sitting my feet would turn to the outside...roll until they were resting sideways.....when I got married and my MIL saw it she told me to stop doing it...I wasn't aware that I was.....
I have diff finding shoes that feel good....my feet always hurt.
I have also had tremors...mostly in my right hand....I first noticed it when I lift something and try holding it.....a glass of water...
Mine was caused from the spina bifida. A person's spinal cord should end around the middle of your back - mine ended at L-4 and was stuck there. I was treated for RLS, Parkinsons, depression, insomnia, IBS, had basically what amounts to a laser hysterectomy because of irregular periods and pain, on and on for about 5 years until they realized my spinal cord was tethered. It causes RLS like symptoms (that medication doesn't relieve), it causes pain in your legs, makes everything hurt from your back to your toes, it causes menstrual problems, urinary problems, quite a few things. It makes you want to have someone take your head and someone take your feet and pull you apart to feel better! haha
About eight weeks out of work, but I'm still recovering two and a half years later. My newest MRI form May of last year shows my cord now ends at L5 which is even lower than it was before the surgery :(
About eight weeks out of work, but I'm still recovering two and a half years later. My newest MRI form May of last year shows my cord now ends at L5 which is even lower than it was before the surgery :(
COMMUNITY LEADER
...so u know what caused urs to be tethered?...how would I know?....Goodness...I was unaware that the legs jerking was a part of this...I thought it was restless leg syndrome....and it comes and goes....but leg pain I have had....and it gets worse while on my feet....so I sit...then my tailbone hurts.....it's a catch 22....lol
I have also had IBS with bladder and bowel issues since I was very young......
how long a recovery time was it for u?
I have also had IBS with bladder and bowel issues since I was very young......
how long a recovery time was it for u?
I will add that the pain in my legs went away instantly and I was able to sleep at night without jerking all night long so that part was worth it, and since mine was pretty advanced I'm sure it saved me from being in a wheelchair. I will have it again if I deteroriate to that point again, but not until that point because of the pain/recovery and the laminectomy itself left me with pain on top of the nerve pain from the spinal cord surgery itself.
Well there is DDD and DJD one is degenerative disk disease and the other is degenerative joint disease.. and I have both.
I have given up on the chiari diagnosis for now..it's not like I want to have another surgery anyway. haha I agree the doctor that talked to me about this was NOT a chiari doctor not was he a very good neurologist.
I had the tethered cord surgery because it was to the point that my legs jerked and jumped and hurt 24/7. No medication helped. I was basically losing my legs. Unless you have symptoms I would do nothing. It was the worst pain I have ever been through in my life (and I had one child natural). I was on morphine and still biting the metal hand rail in ICU. Also, there is no guarantee it will not get tethered again. My MRI is showing mine as tethered again only 2 1/2 years after surgery. My neurosurgeon just wants to control pain until I exhibit symptoms of losing function in my legs, bowels or bladder.
What has caused yours to tether?
I have given up on the chiari diagnosis for now..it's not like I want to have another surgery anyway. haha I agree the doctor that talked to me about this was NOT a chiari doctor not was he a very good neurologist.
I had the tethered cord surgery because it was to the point that my legs jerked and jumped and hurt 24/7. No medication helped. I was basically losing my legs. Unless you have symptoms I would do nothing. It was the worst pain I have ever been through in my life (and I had one child natural). I was on morphine and still biting the metal hand rail in ICU. Also, there is no guarantee it will not get tethered again. My MRI is showing mine as tethered again only 2 1/2 years after surgery. My neurosurgeon just wants to control pain until I exhibit symptoms of losing function in my legs, bowels or bladder.
What has caused yours to tether?
COMMUNITY LEADER
Oh I see...can I suggest that ur dr is not a chiari specialist then....I have had the experience with 2 NS and one said I did not have chiari the other said I did...my herniation is 6 mm.I also have TC...and I thought it was DDD for degenerative disk , but ok....
What issues did u have that they decided to untether....anad did thos issues go away?...was it worth it to u to have the surgery?....I am sure it is painful....but whatever u can tell me I'd appreciate.
"selma"
What issues did u have that they decided to untether....anad did thos issues go away?...was it worth it to u to have the surgery?....I am sure it is painful....but whatever u can tell me I'd appreciate.
"selma"
The MRI report says borderline for Chiari with my c. tonsils distending 5mm....my doctor for some reason doesn't want to say I have Chiari...even though I have various symptoms.
DJD = Degenerative Disk Disease.
What would you like to know about the tethered cord surgery? I am brutally honest so some things I say may not sound supportive because I don't sugar coat all the issues/surgeries/pain. I just tell it like I have experienced it :)
DJD = Degenerative Disk Disease.
What would you like to know about the tethered cord surgery? I am brutally honest so some things I say may not sound supportive because I don't sugar coat all the issues/surgeries/pain. I just tell it like I have experienced it :)
COMMUNITY LEADER
Welcome.....we can always use another persons knowledge here on topics we may not be familiar.
May I ask y do u say possible 5 mm chiari?...u can have chiari with a 0mm herniation...
and what is DJD?
May I ask about ur TC surgery...I was recently dx and would like to hear how it went for someone else.
I hope u continue to post here it a great place for info and support.
"sselma"
May I ask y do u say possible 5 mm chiari?...u can have chiari with a 0mm herniation...
and what is DJD?
May I ask about ur TC surgery...I was recently dx and would like to hear how it went for someone else.
I hope u continue to post here it a great place for info and support.
"sselma"
Syrinx and meningocele are definately not the same thing.
Syrinx is a fluid filled cavity in your spinal canal. Meningocele is a birth defect where your spine either extrudes out or in (Spina Bifida). I was born with spina bifida myleomengocele. It was repaired shortly after birth. Later in life I had surgery to repair a tethered cord, another surgery to repair a cervical disk, I have a syrinx, hemaningoma, bulging disks, mild scolosis, possible chiari 5mm herination, DDD, DJD the list goes on and on.
Syrinx is a fluid filled cavity in your spinal canal. Meningocele is a birth defect where your spine either extrudes out or in (Spina Bifida). I was born with spina bifida myleomengocele. It was repaired shortly after birth. Later in life I had surgery to repair a tethered cord, another surgery to repair a cervical disk, I have a syrinx, hemaningoma, bulging disks, mild scolosis, possible chiari 5mm herination, DDD, DJD the list goes on and on.
COMMUNITY LEADER
Hi Annie, I also found this deffinition to add to Shanes info....Shane has a bit more included, but copied and pasted this from the web as a added reference.
Definition of Meningocele (MM)
Meningocele (MM):Protrusion of the membranes that cover the spine and part of the spinal cord through a bone defect in the vertebral column. MM is due to failure of closure during embryonic life of bottom end of the neural tube, the structure which gives rise to the central nervous system (the brain and spinal cord). The term spina bifida refers specifically to the bony defect in the vertebral column through which the meningeal membrane and cord may protrude (spina bifida cystica) or may not protrude so that the defect remains hidden, covered by skin (spina bifida occulta). However, through usage the term spina bifida is gradually becoming synonymous with MM.
Definition of Meningocele (MM)
Meningocele (MM):Protrusion of the membranes that cover the spine and part of the spinal cord through a bone defect in the vertebral column. MM is due to failure of closure during embryonic life of bottom end of the neural tube, the structure which gives rise to the central nervous system (the brain and spinal cord). The term spina bifida refers specifically to the bony defect in the vertebral column through which the meningeal membrane and cord may protrude (spina bifida cystica) or may not protrude so that the defect remains hidden, covered by skin (spina bifida occulta). However, through usage the term spina bifida is gradually becoming synonymous with MM.
Meningocele is a form of Spina Bifida.
Do you know if you have Posterior or Anterior meningocele?
In a Posterior Meningocele, the outer faces of some vertebrae are open (unfused) and the meninges are damaged and pushed out through the opening, appearing as a sac or cyst which contains cerebrospinal fluid. The spinal cord and nerves are not involved and their function is normal.
In an anterior meningocele, the inner faces of vertebrae are affected and the cyst protrudes inward.
Usually a meningocele has no negative long-term effects, although there are reports of tethered cord.
Do you know if you have Posterior or Anterior meningocele?
In a Posterior Meningocele, the outer faces of some vertebrae are open (unfused) and the meninges are damaged and pushed out through the opening, appearing as a sac or cyst which contains cerebrospinal fluid. The spinal cord and nerves are not involved and their function is normal.
In an anterior meningocele, the inner faces of vertebrae are affected and the cyst protrudes inward.
Usually a meningocele has no negative long-term effects, although there are reports of tethered cord.
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