Hi everyone,Im 6 mths post op and MRI confirmed I have a puesdomeningcele with no csf flow through the posterior cervico medullry junction.My symptoms are getting worse to the point were I cant stand up but need to lie down to ease the pressure and pain.My neck has also tightned up to the point where I cant put my chin on my chest??? feels very much like the chemical meningitis but my GP said no it wasnt.Has put me on acetazolamide to reduce the pressure,has anyone heard of these? Im seeing the neuro surgeon next tues to see if he is going fix it x
i've never heard of this med...but it says " Acetazolamide is used to prevent and reduce the symptoms of altitude sickness. This medication can decrease headache, tiredness, nausea, dizziness," so it might help in some ways but doesnt sound like a med you want to be on for long periods of time.... if you havent read info about the med look here http://www.medicinenet.com/acetazolamide-oral/article.htm
sounds to me like you are going to be shunted...I am sorry,I hope it truly helps you...however- from experience I dont like the shunt and i will warn you if you get a VP shunt it is likely that the cathader hose that is left just to "float" around in your stomach hurts for quite sometime until it finds a place to rest---Every time i told my NS about this he looked at me like i tured every shade of purple and green right in front of him and said NO that cant be so!(all in my head-i HATE that answer!!) Oh yeah and do yourself a favor if you get a shunt--find out if they are going to shave your head...I know its not what you really want but shave your head on your own (or hair dresser) they do a HORRIBLE job in the hospital-- i refused to leave the hospital with a 1/2 of head of hair and made my husband bring our razor in and shave the other 1/2 before i left..LOL...
Best to you
HUGS
Lisa
Hi Lisa,thanks for your message,am seeing the NS in a couple of hrs,not looking forward to it beacuse he is an arrogant idiot! who said in Feb there is nothing wrong it is all in your head!!!!! will let u know what he says xx
Well just got back from seeing the NS,was very nice to me for a change! is going to fix my pusedomeningcele and put in a new dura graft.Has also put me on priority list for surgery! so different from his attitude in Feb when he said there is nothing wrong with you but ill order a CINE MRI just to put your mind at rest!
Has anyone had their pusedomeningceleand dura repaired? how big is the scar? and do they go back through the same incision?
Hi Denise,
I am glad you are getting help! Did your NS say what kind of graft material? I know Susan had the bovine graft for her revision. Please let us know when surgery is scheduled.
Take care, JoAnne
Hi susan,thank you for that,you have put my mind at rest.he said that Im at risk of developing a syrinx? and if that happens then Ill need a shunt but they will replace the dura first and drain and take it from there.Said I will be in for a week maybe more but has put me on his priority list so should be in the next few weeks xx
Susan J said:
My NS reopened my original decompression incision. I had a different NS who did the repair. He actually shaved less of my hair than my decompression surgery. He used the same incision site. The scar was the same as my decompression surgery. The recovery for the repair SO much easier. I was miserable after my decompression surgery. I actually felt great after the psuedomeningocele repair. I was in the hospital for 5 days. I had a lumbar drain. The lumbar drain was more of a nuisance than anything else. The purpose of the lumbar drain was to control the pressure being put on the repair site. They could also check the pressure level to make sure that high pressure doesn't contribute to the repair not working. On day 3 they checked my pressure every hour they would gradually increase the pressure level. I had to have a CT on day 4 to see if the repair worked. On day 5 the took the drain out. I had to have another CT to make sure that the repair was holding without having the lumbar drain.
Honestly this surgery was the easiest out of all surgeries that I have had...decompression, shunt, shunt revision, and gallbladder.
Susan J
Hi Joalexa,
Should be within the next few weeks he said,put me on his priority list,which scared me a little because they dont do that for nothing.Said the risk is that I could develop a syrinx after the surgery and that he will then need to shunt it,did that happen to you?
Denise xx
Joalexa said:
Hi Denise,
I am glad you are getting help! Did your NS say what kind of graft material? I know Susan had the bovine graft for her revision. Please let us know when surgery is scheduled.
Take care, JoAnne
My daughter is an avid tennis player who developed pain in her neck and right arm. An MRI showed an 8mm Chiari with extensive syrinx and that is why she had the surgery. We really had no choice but to treat this. I guess if CSF flow is blocked then you could develop the syrinx. Hopefully your revision surgery will resolve all your issues. I am praying for you!
As far as the PM, we go to the surgeon today for her 3.5 week follow up. They said she would only need the shunt if her PM got “tight”. Apparently some bulging is not that uncommon and is expected to resolve. She is still fatigued but she seems to be a bit better everyday. The surgeon told us that while the operation isn’t "dangerous " the recovery is very painful. We can attest to that since they only sent her home with Motrin!
Take care JoAnne .
Denise said:
Hi Joalexa,Should be within the next few weeks he said,put me on his priority list,which scared me a little because they dont do that for nothing.Said the risk is that I could develop a syrinx after the surgery and that he will then need to shunt it,did that happen to you?
Denise xx
Joalexa said:Hi Denise,
I am glad you are getting help! Did your NS say what kind of graft material? I know Susan had the bovine graft for her revision. Please let us know when surgery is scheduled.
Take care, JoAnne
Hi Joalexa,please let me know how she gets on with the NS today,Ill be thinking of you both Denise xx
Joalexa said:
My daughter is an avid tennis player who developed pain in her neck and right arm. An MRI showed an 8mm Chiari with extensive syrinx and that is why she had the surgery. We really had no choice but to treat this. I guess if CSF flow is blocked then you could develop the syrinx. Hopefully your revision surgery will resolve all your issues. I am praying for you!
As far as the PM, we go to the surgeon today for her 3.5 week follow up. They said she would only need the shunt if her PM got "tight". Apparently some bulging is not that uncommon and is expected to resolve. She is still fatigued but she seems to be a bit better everyday. The surgeon told us that while the operation isn't "dangerous " the recovery is very painful. We can attest to that since they only sent her home with Motrin!
Take care JoAnne .
Denise said:
Hi Joalexa,Should be within the next few weeks he said,put me on his priority list,which scared me a little because they dont do that for nothing.Said the risk is that I could develop a syrinx after the surgery and that he will then need to shunt it,did that happen to you?
Denise xx
Joalexa said:Hi Denise,
I am glad you are getting help! Did your NS say what kind of graft material? I know Susan had the bovine graft for her revision. Please let us know when surgery is scheduled.
Take care, JoAnne
Hi Susan<hope you are ok? whats the recovery time for a dura repair surgery? how long will I be off work for? NS said Ill be in hospital for about a week x
Susan J said:
My NS reopened my original decompression incision. I had a different NS who did the repair. He actually shaved less of my hair than my decompression surgery. He used the same incision site. The scar was the same as my decompression surgery. The recovery for the repair SO much easier. I was miserable after my decompression surgery. I actually felt great after the psuedomeningocele repair. I was in the hospital for 5 days. I had a lumbar drain. The lumbar drain was more of a nuisance than anything else. The purpose of the lumbar drain was to control the pressure being put on the repair site. They could also check the pressure level to make sure that high pressure doesn't contribute to the repair not working. On day 3 they checked my pressure every hour they would gradually increase the pressure level. I had to have a CT on day 4 to see if the repair worked. On day 5 the took the drain out. I had to have another CT to make sure that the repair was holding without having the lumbar drain.
Honestly this surgery was the easiest out of all surgeries that I have had...decompression, shunt, shunt revision, and gallbladder.
Susan J
Thats great to hear! Iam a teacher too and Im worried about having time off.Did you have your dura repaired or replaced? said Ill be in at least a week so cant see going back to work after 2? but you never know,like you said you felt so much better and hopefully I will do too.Just worrys me them going back through the incision!!!! still feels raw from the op,the thought of them cutting through it makes me cringe!!! xx
Hi Susan,so sorry to hear of all the probs you have had!!!its dreadful! my boss isnt supportive at all,the typical case when you tell someone you have chiari! what the hell is that!! and would expect me to be in work even if my head was decapitated off! ha,ha.Im just worried why the NS has put me on his urgent surgery list?? is this dangerous? I can feel the pressure inside my head getting worse.last time I waited 2 mths for the decompression surgery but he said this time it will only be a few weeks,
Denise xx
Susan J said:
My NS stitched what he could of the existing patch, then put some glue stuff (I don't remember the name). He then put the new bovine patch and then some more glue. He made sure it wasns't going to leak. We joked that the only thing he didn't use was duct tape.
I'm not working right now. I had to apply for long term disability. My primary care doctor recommended it. I told him he had a year to get me "fixed". I'm waiting to hear if I am approved. They are reviewing my records right now. The reason my PCP recommended long term disability is my neck has been swelling. It gets to the point were it is 5-6 times its normal size. I thought I had another psuedomeningocele and I was right. My dog flipped me over while I was sleeping in a recliner. I hit my head hard. My neck has been swollen and the headaches have been back ever since, plus tremors in my arms and hands which I never had up until this point. It turned out the psuedomeningocele is the smallest it has ever been. The NS doesn't think that it is causing the problems. I also had an appoinmtent with my NL. They both think that I have develope Cushings syndrome. It is usually cause by steriods, but I haven't had any. They both said a small percentage Cushings is cause by damage to the endocrine system. Neither could confirm that it was connected to the pressure and fluid I had in my head. I can't help but think that going a year with a large psuedomeningeocele has to put pressure on surrounding area. I go for a MRI on Friday. They also want to rule out that I didn't herniated the bulging discs in my C-spine.
If you can get your NS to repair it now, do it. Don't wait. I wish I had mine repaired when they first found it instead of having the shunt put in. It has been a huge mess. The repair surgery really was a breeze compared to the other surgeries. Is your principal supportive? I was really lucky. My principal has been absolutely amazing.
Also...don't sleep in a recline if you have a boxer who thinks she should be a lap dog (ha ha!!!).
I pray everything will work out for you,
Susan J
Susan J
surgery date set to repair my torn dura and pusedomeningcele,13th June.Has anyone else had this surgery? whats the recovery time? NS said the risks are that I may develop syringomyelia,has anyone else? thanks Denise x
I was back to work in 2 weeks but only part time.
I didn’t think the surgery was that painful. I was
Hurting so bad before the surgery. My leak was
bad. I felt relieved when I woke up.
I’m glad their not putting in a shunt for you. It
didn’t work for me. It made me worse!!
Good luck.
Denise said:
surgery date set to repair my torn dura and pusedomeningcele,13th June.Has anyone else had this surgery? whats the recovery time? NS said the risks are that I may develop syringomyelia,has anyone else? thanks Denise x
Hi Susan,he said I will be in for a week at least,dont know why I will be in that long?? Im not having a lumbar drain xx
Susan J said:
Denise,
Let me know how your surgery goes. When is the last day of school? It is a good thing you have summer break to recover. Surgery is not a pleasant event to say the least, but I can't stress enough that this surgery was the easiest. Is your NS going to put in a lumbar drain? How long did he say you would be in the hospital?
Susan
Denise said:surgery date set to repair my torn dura and pusedomeningcele,13th June.Has anyone else had this surgery? whats the recovery time? NS said the risks are that I may develop syringomyelia,has anyone else? thanks Denise x
I had all the symptoms of meningitis,so they put me on Diamox,your right,the pressure was so bad I couldnt look at the light or move my neck.Ive had this leak for 6 long mths now! its just pure neglect xx
Poptart said:
Diamox is the brand name of the med. It is given to reduce the fluid in your head to reduce the pressure which is probably why that your neck is getting stiff . They are not giving you the med for any type of motion sickness. You are taking the med to reduce the fluid pressure in your head.
Denise, we are hoping for a fast recovery! I have a question about your PM. Do you have bulging or swelling at your neck or incision, or just the awful headaches? Most posts I’ve read here seem to have the visible squishy swelling and I was wondering if there could be a PM if there was no swelling or bulging? In any case it’s how you feel that counts and I am so glad your NS is being proactive!
JoAnne x
Denise said:
I had all the symptoms of meningitis,so they put me on Diamox,your right,the pressure was so bad I couldnt look at the light or move my neck.Ive had this leak for 6 long mths now! its just pure neglect xx
Poptart said:Diamox is the brand name of the med. It is given to reduce the fluid in your head to reduce the pressure which is probably why that your neck is getting stiff . They are not giving you the med for any type of motion sickness. You are taking the med to reduce the fluid pressure in your head.
I didn’t have any swelling with my pm but… If
I layed down and tapped on the back of my
head I could hear the pm. It sounds like water in
your ears except it’s in the back of your head.
I kept telling my NS about it and he kept blowing
me off.
My lumbar puncture pressure was normal so it
was not causing my pm to get worse.
Susan J said:
I had a lot of swelling with i first developed the pm. i was shunted and i went a year before i got a ns to listen to me. i had a csf leak. this one waa not as visible. i could feel it when i laid down. I had horrible headaches a neck pain. a year later they dis the repair. i was goos for 9 months. i hit my head and have a pm again. this one is the smallest. you cant see anything. i have headaches and a lot of neck pain. it more nerve pain than anything else. the ns called it occipital neuralgia.
Joalexa said:Denise, we are hoping for a fast recovery! I have a question about your PM. Do you have bulging or swelling at your neck or incision, or just the awful headaches? Most posts I’ve read here seem to have the visible squishy swelling and I was wondering if there could be a PM if there was no swelling or bulging? In any case it’s how you feel that counts and I am so glad your NS is being proactive! JoAnne x
Denise said:I had all the symptoms of meningitis,so they put me on Diamox,your right,the pressure was so bad I couldnt look at the light or move my neck.Ive had this leak for 6 long mths now! its just pure neglect xx
Poptart said:Diamox is the brand name of the med. It is given to reduce the fluid in your head to reduce the pressure which is probably why that your neck is getting stiff . They are not giving you the med for any type of motion sickness. You are taking the med to reduce the fluid pressure in your head.
I believe your surgery is today. Best of luck for a full and quick recovery! C.