Need some advice! Had an Mri 3 weeks ago and it has showed a pusedomeningcele and no flow through the posterior cervico melludary junction??? does anyone know what this means??? saw the neurologist on friday and he was very reluctant to comment,said its the neuro surgeons call to what he does.Have been suffering horrendous headaches on standing that lasts all day untill I lie down,also bad vertigo on standing! Please can someone tell me what this means and whats the treatment for it? thanks x
well A pseudomeningocele is an abnormal collection of cerebrospinal fluid and no flow means just that your CSF fluids are not flowing through or beyond the posterior cervico melludary junction, and yes a neurosurgeon will disguss that with you.
In the meantime- it is because you have high CSF pressure that laying down helps relieve the pressure- might i suggest you lay down as often as possible.
I am not goint to comment on the treatment as i dont exactly know your medical issues. but When is your NS appointment?
Had the decompression surgery in Nov 2012 si Im 6 mths post op now,seeing the neuro surgeon on 15th may x
2011 I mean! x
Hi Susan ,thanks for that.I dont have hydrocephelus but I do have no flow in the posterior cervico mellundary junction with a little around the 4th ventricle,does any of that make any sense to you? they say ive prob had the meningcele for 6mths,couldnt live with this headache another 6 mths! I had chemical meningitis after the op for 8 weeks before they reluctantly gave me steroids! left me for 8 weeks with nothing! just been one big nightmare x
Susan, You make me wonder had things not gone the way they did for me- would they had done the same- leading up to day 19 after decompression and many visits to the local ER complaining of massive head pain- vomiting-confusion-pain better when laydown or standing (that part iam not 100%sure of anymore) they said i was also dehyrated-they give me fluids,send me home with more pain meds (thinking i wasnt holding them down due to vomiting) and meds to stop me from vomiting.....on day 19 thanks to a persistant husband and a dr doing his job (looked back on my visitis in the past 19 days) decided to run a CT scan to find out what was going on...and WALLAH the culprit fluid on the brain MASSIVE at that-an NS was called in- and i was being preped for emergency surgery to place a shunt-which was their only alternative because of the amt of fluid-- the nurse told my husband he got me there in time! and if i made it through this there is no telling "how i may come out" they were expecting complications---i later learned that i had so much fluid build up it was amazing i was able to walk at all and even answer a simple question----after 3 days in hospital they shipped me out (when i woke up I had NO CLUE why i was there) within 7 days i was back in the hospital for 2 weeks because my fluid was too low and my brain was pulling away from the sides --is how it was explained to me.... after that..i havent been back to the hospital thank god!!!!........but i often wonder as the doctors have said "if i really needed the shunt" but as time passes ive come to believe i do because i figure if i didnt i wouldnt need the setting changed- ---so some can look at that as either my way of accepting it or i really did need it...
....but it sure was no picnic having that darn thing inside me for the first 2 yrs thats for danged sure!!..
I should mention I did not have any form or inkling of hydrocephalus before my decompression surgery, and when i was diagnosed and had emergency shunt placement surgery for "Hydrocephalus" my decompression NS and my shunt placement NS were in constant contact..(decompression Dr was in Wi) Decomp NS was completely stumped by this set back and couldnt believe it had happened to me. And to this day I still hear from the Decompression dr on average every 3 mths.
susan once again those words i hear "well you probably dont even need that shunt" come back in my mind when i read your story--and sometimes i find myself wondering what if i didnt have the shunt?, what if they caught the fluid build up sooner what would i have gone through?--
Denise i hope you can get to the bottom of this soon, dont take NO for an answer and be a persistant little bugger if you have too...You MUST be your own advocate! Wishing you the best--Hugs
Hi Lisa,thanks for your reply,very much appreciated.Just been back to my local doctor and he has given me another course of steroids! its the only thing that eases it,said if I get no joy from my NS then he will refer me to another one in Liverpool United Kingdom where he is a chiari expert.My NS isnt and does all different ops,only performs 5 a year!.What worries me is I have read that some NS leave the puesdomeningcele to see if it will go away by itself!!!! must of had it at least 5mths now,I couldnt cope for another 3mths with it,I think Id kill myself! has totally ruined my life.My MRI showed no evidence of Hydrocephalus" but does it mean that it could still happen?
thanks Denise xx
Lisa W said:
Susan, You make me wonder had things not gone the way they did for me- would they had done the same- leading up to day 19 after decompression and many visits to the local ER complaining of massive head pain- vomiting-confusion-pain better when laydown or standing (that part iam not 100%sure of anymore) they said i was also dehyrated-they give me fluids,send me home with more pain meds (thinking i wasnt holding them down due to vomiting) and meds to stop me from vomiting.....on day 19 thanks to a persistant husband and a dr doing his job (looked back on my visitis in the past 19 days) decided to run a CT scan to find out what was going on...and WALLAH the culprit fluid on the brain MASSIVE at that-an NS was called in- and i was being preped for emergency surgery to place a shunt-which was their only alternative because of the amt of fluid-- the nurse told my husband he got me there in time! and if i made it through this there is no telling "how i may come out" they were expecting complications---i later learned that i had so much fluid build up it was amazing i was able to walk at all and even answer a simple question----after 3 days in hospital they shipped me out (when i woke up I had NO CLUE why i was there) within 7 days i was back in the hospital for 2 weeks because my fluid was too low and my brain was pulling away from the sides --is how it was explained to me.... after that..i havent been back to the hospital thank god!!!!........but i often wonder as the doctors have said "if i really needed the shunt" but as time passes ive come to believe i do because i figure if i didnt i wouldnt need the setting changed- ---so some can look at that as either my way of accepting it or i really did need it...
....but it sure was no picnic having that darn thing inside me for the first 2 yrs thats for danged sure!!..
I should mention I did not have any form or inkling of hydrocephalus before my decompression surgery, and when i was diagnosed and had emergency shunt placement surgery for "Hydrocephalus" my decompression NS and my shunt placement NS were in constant contact..(decompression Dr was in Wi) Decomp NS was completely stumped by this set back and couldnt believe it had happened to me. And to this day I still hear from the Decompression dr on average every 3 mths.
susan once again those words i hear "well you probably dont even need that shunt" come back in my mind when i read your story--and sometimes i find myself wondering what if i didnt have the shunt?, what if they caught the fluid build up sooner what would i have gone through?--
Denise i hope you can get to the bottom of this soon, dont take NO for an answer and be a persistant little bugger if you have too...You MUST be your own advocate! Wishing you the best--Hugs
yeah i dont remember if i had a headache when it was all going on....LOL...i just remember asking to make it all stop!!..my husband said i was crawling on the floor begging for help at midnight...(the 19th night when i was sent for emergency surgery)
Isnt it just crazy how these things seem to be- i thought for sure i was the only one who this kinda happened too...but now i learned iam not..(kinda greatful for that, and sory too-that you guys suffer too)
can you explain what this psuedomeningeocele feels like, iam wondering if what i have been feeling recently might be the same- recently it seems that the right side of my neck swells,just under the base of the skull- then along the cathader hose behind my ear-it seems to swell and is tender to the touch from there to the base of the skull- like along the inscision (i kinda have an indent(its not flat across) @ the base of the skull so when i feel that swelling it seems to swell there then 2 fingers from base of skull down the right side).
I never actually had the pressure checked that way but i am told if they need to check it thats how they can do it..Good Luck Hope it all goes well...I'll keep my fingers crossed for you!!...
~Lisa
Ha,ha I know I keep forgettting too!! Sounds like you have had an horrendous time Susan!!! I have no idea where mine is,I have no swelling just pain at the back of my head and a awful pressure headache.My doc said yesterday even though its a low pressure headache u still have high pressure in the brain?! is that true? some NS dont operate on them do they Ive read? I also have no flow to the cervico melludary junction???? what does this mean?? could it be down to the puesdomeningcele? am worried Ill need a shunt because of the poor flow xx
WOW you guys are actually answering some questions that ive been having brushed off...for a very LONG time!!
1. why do i hear noises with my shunt? not constantly but at times it sounds like a tish tish sound or similar to a kicking keg of beer (easy way to explain it to men). My NS keeps telling me the shunt doesnt make noises and I am imaging things the last time i was in his office for a check (because of an MRI) I finally got one of his PA's to finally admit that sometimes YOU DO hear the shunt making noises-my husband and i almost fell over!
2.the swelling in neck and tendernouse in neck and along cathader hose behind ear
3. tendernous by bur hole on top of head
4. occasional wetness in ears.
now ya all got me wondering (ok more then wondering) if my shunt NS is more of a wingnut then i thought!!.--LOL---
I do have a question How often are you seen by your NS who placed the shunt for followup, or does an NL keep track of you with your shunt and other issues as well???
i recently had a new thing start for me Tremors- and of course they cant find nothing on their testing and I am wondering if this is a "hop a long" thing or what? For now before they stop me in my tracks I get these warning signs (shakes) to give me enough time to sit down or lay down, (by "hop along" i mean another chiari issue or what, i had an eeg done came up neg- but right after it was done i had a tremor and lady was more interested in getting me out the door then helping and she never did tell my NL about it)they are not violent but they do tend to shake my entire body. and when over I am completely wiped out and usually for the rest of the day and partial of the following especially depending on the time of day they happen-i am greatful i do not get them everday-that would completely SUCK!--anyway just wondering if these are part of either issues since its obvious i need to be both DOCTOR & PATIENT ;)
It is so nice to find someone who understands,its an horrendous thing! I have been made feel like a liar since my op in nov 2011,kept fobbing me off saying it will be the meningitis settling or you have to give it more time and be patient!!!! when I knew all along that something was wrong,my after care by the NS has been shocking>his attitude in Feb was look Ive removed the chiari and decompressed the brain so be grateful,go back to work and get on with your life!!! I think the cervico mendullary is the section of the brain that the chiari malformation had compressed so they persumed that once it was removed then the flow would be normal but this hasnt been the case for some reason? unless its down to the pusedomeningcele??? Is this a rare complication to get? because cant find much on it? I just hope and pray that he operates to remove the pusedomeningcele and doesnt leave me again! why are steroids the only thing that eases the pressure down? my doc said its because the pusedomeningcle can cause high pressure in the brain.
Denise xx
Denise,
As soon as I think I have the low pressure vs. high pressure figured out then the NS will say something that changes thoughts. I then restate to the NS my understandings so I get clarification.I don't know anything about the cervico medullary junction. I've never heard that one mentioned before.
Lisa,
The first NS brushed off ALL symptoms I was having. I had to fight getting appointments. At one point, I went to the ER just so they would have to see me. Everytime after having my shunt put in I was told that my scans were great and to come back in 2 years. NS number two validated EVERYTHING I told him. My last appointment was in May of 2011 with him and we knew he was moving back to Florida. He made all the arrangements and reviewed my case with the Fellow NS who was taking his cases. I decided that since that Fellow NS would mostly like be leaving in July too that I didn't want to start with another doctor who would be leaving. NS number two consulted with the new NS (number 3) during my surgeries so I pleaded my cases and he agreed to see me. So far his viewpoints on my symptoms are just like NS number 2. He validated all my concerns. I think how frequent you see a NS depends on the doctor and circumstances. Even with mine, I was told that every two years was okay, but that at the first sign of trouble I needed to make an appointment. I thought my NL could at least tell if I had fluid building again and look at my ventricle size. My NL is totally useless. After I figure out what is going on and I'm done with the NS, I will find another NL. I don't know what I should be able to expect from a NL in terms of a shunt or a psuedomeningeocele. My primary care doctor has been more useful. He will go and research things and I will take in articles that I have found. I told him he was going to be a Chiari expert by the time I was done with him. He has been better at treating my symptoms and my headaches that the NL.
As far as the tremors, that is a new symptom for me too. I had occasionally brief tremors in my left hand over the last 2 years and then they were very brief. Now they are almost daily and in both hands. They can last for a few minutes or hours. I haven't been driving very much because my vision gets really blurry when the pressure builds. I had something I needed to do and my pressure is better in the morning so drove myself. My hands tremored for hours.
The NS said all my symptoms over lap so he is referring me to an endocrinologist to look for cushing syndrome, checking the bulges I had in my C-spine to see if they have herniated after hitting my head and checking the pressure level. The referral to the endocrinologist is becasue my neck is swelling really bad. I finally had my mom take a picture of my neck with my camera. We took a pictures of a good day and bad days. The day of my appointment is was a little swollen, but no as bad as it gets. My neck swells about 5-6 times its normal size. Cushings is normally caused by taking steriods. I haven't had any. He said that with the pressure and the fluid that I had and the time frame that I had it that there could be damage done to my endocrine system.
I hope that NS number 3 continues to be so open and easy to talk to. I really appreciate that he is ruling out all other factors before saying "hey let's cut open your head again". I'm waiting for authorization for the endocrinologist and MRI. He is doing the pressure check Thursday. He told me if the pressure check points to needing another shunt that takes precedent. I appreciate how thorough he is being.
Denise and LIsa,
I have to say I am so grateful I found you two or rather that we found each other! It's nice to know I'm not crazy. I hate that someone else has gone through what I have, but at the same time it is a comfort to know I'm not alone.
Susan J
Hi Denise,
I had the a psuedomeningcele (csf build up) repair just this April 3, 2012 after my decompression tht was done on Dec 20, 2011 and had the same symptoms you do and had to have them go in and fix a stitch that popped from my 1st surgery. It is a awful feeling. Do you have a lot of swelling in the back of your head? I would make an appt with a neuro surgeon right away. I will be praying for you.
Paula
Hi Paula,so sorry to hear you had thd the same! did you have positional headaches too? their awful arnt they! feel so sick and tired and dizzy all the time and the pressure!!! what was the op like to repair it like? how you feeling now? xx
Thanks Susan your a star!! I think were a medical mystery! beacuse my NL was very vague on friday and couldnt answer any of my questions,said he would have to go home and study it!!!! that made me panic alittle,trust us to get this wretched thing xx
Susan J said:
I found these websites on psuedomeningoceles. I thought I would share:
http://www.medscape.com/viewarticle/466999_2 This one connects psuedomeningoceles to having laminectomies. I don't remember ever reading about a connection to laminectomies.
http://www.biomedcentral.com/1471-2474/11/53 This one also refers to it as post-laminectomy. It talks about trapped nerve roots. I think this would explain the neck pain I have to shoots out when I move my head. I didn't have this until the last few months.
Both of these articles talk about the different locations of psuedomeningoceles. Mine have been right at the location that the dura was cut. The NS I have now said that I have scar tissue somehow connected to psuedomeningocele and my patch. He said right now it was microscopic and that if we didn't control the inflammation I have or if the psuedomeningocele gets bigger it could cause a CSF leak. The test I'm having on Thursday will hopefully confirm that I don't already have a slow CSF leak.
I hope these help. I hate that there isn't more information available or simplified versions that puts in in plain English not medical jargon. I feel like I am studying for a test. I was trying to get ready and make sure I have my questions ready for Thursday.
Susan J
the ONLY time i see my NS is to have the shunt check after a MRI he said he DOESNT want to see me any other time. They say he is a NS only and he doesnt have time for "follow ups" HUH??!? arrogant S.O.B--but i feel kinda stuck with him as i dont know of other NS offices and he's way better then the other NS in the practice who told me (for chiari) sure you have chiari- but your flow is good, its all in your head and come back to me when you can no longer breathe- so I dont want someone like that even coming close to me anymore--- LOL---
and it seems that every NL i find doesnt have the time of day or something- like this last one- he does appear to know chiari and hydrocephalus however everytime i go into see him he never wants to set follow up appointments for anything. Like i just had an EEG done and I was informed no follow-ups necessary "if anything comes of it- he will call me" I had to send an email to his office to find out the results of the EEG, that is not right!! I do not like places that say that- to me that is just lazy!!! honestly i dont care what a test says they should contact their patient no matter what esp if they refuse to set follow -ups. & he still hasnt looked at the recorded tremor i gave to him on an SD card 6 weeks ago!! reason being- he doesnt have a SD card reader- (his office is right behind a BESTBUY!!) I am not sure if he doesnt see the almighty $ coming from me or what but i feel like i dont get the proper care from him or i wouldnt get the proper care from him if i see him long term- so i have resigned myself to the NL search again (umph how disheartening) I had high hopes for him- esp since he knows both issues, what a let down!.
I have to say--- Thank you! Susan & Denise.. this has clicked and made me feel that hey sure you have a shunt but those other things are all very real... so thank you!! to you both for opening my eyes, educating my brain, and easing my worries.
my tremors use to involve just my upper back and head (b4 decompression), now when i get them they involve my entire body-- from all the research i have been able to do on them I think they are what is known as Essential Tremors...but i dont have that Dr's certificate so no one will take my word for it..lol...and well my NL "doesnt see it"
Hi Lisa,I know exactly how u feel! why are NS such ignorant gits!!!! did you have the shunt put in beacuse of the pusedomeningcele? am seeing NS in 2 weeks but havent a clue what he going to say,was so rude with me in Feb and said will do an MRI but it will be fine and you need to get on with your life now!!! if the flow is blocked,does that mean I need a shunt as well as a repair? xx
Lisa W said:
the ONLY time i see my NS is to have the shunt check after a MRI he said he DOESNT want to see me any other time. They say he is a NS only and he doesnt have time for "follow ups" HUH??!? arrogant S.O.B--but i feel kinda stuck with him as i dont know of other NS offices and he's way better then the other NS in the practice who told me (for chiari) sure you have chiari- but your flow is good, its all in your head and come back to me when you can no longer breathe- so I dont want someone like that even coming close to me anymore--- LOL---
and it seems that every NL i find doesnt have the time of day or something- like this last one- he does appear to know chiari and hydrocephalus however everytime i go into see him he never wants to set follow up appointments for anything. Like i just had an EEG done and I was informed no follow-ups necessary "if anything comes of it- he will call me" I had to send an email to his office to find out the results of the EEG, that is not right!! I do not like places that say that- to me that is just lazy!!! honestly i dont care what a test says they should contact their patient no matter what esp if they refuse to set follow -ups. & he still hasnt looked at the recorded tremor i gave to him on an SD card 6 weeks ago!! reason being- he doesnt have a SD card reader- (his office is right behind a BESTBUY!!) I am not sure if he doesnt see the almighty $ coming from me or what but i feel like i dont get the proper care from him or i wouldnt get the proper care from him if i see him long term- so i have resigned myself to the NL search again (umph how disheartening) I had high hopes for him- esp since he knows both issues, what a let down!.
I have to say--- Thank you! Susan & Denise.. this has clicked and made me feel that hey sure you have a shunt but those other things are all very real... so thank you!! to you both for opening my eyes, educating my brain, and easing my worries.
my tremors use to involve just my upper back and head (b4 decompression), now when i get them they involve my entire body-- from all the research i have been able to do on them I think they are what is known as Essential Tremors...but i dont have that Dr's certificate so no one will take my word for it..lol...and well my NL "doesnt see it"
Hi Paula,hope u are well? do you think they will repair mine if I have the pusedomenincele and csf obsruction? surely they cant leave me like this can they????!!!!.Back on steriods again! 6th course now! dizzy everytime I stand up and then the headache starts as soon as I get out of bed in the morning and only eases when I lie down.Did you have all this Paula? x
PAULA MEDINA said:
Hi Denise,
I had the a psuedomeningcele (csf build up) repair just this April 3, 2012 after my decompression tht was done on Dec 20, 2011 and had the same symptoms you do and had to have them go in and fix a stitch that popped from my 1st surgery. It is a awful feeling. Do you have a lot of swelling in the back of your head? I would make an appt with a neuro surgeon right away. I will be praying for you.
Paula
Hi. Im 8 months post op and I too have a pseudomenningocele. Neurologists tend to not comment about this and refer you to your NS that did your surgery. In my case, I went and got a 2nd opnion from another NS. My current surgeon was dismissive to my compplaints. Gid forbid he admit something may have gone wrong. New NS says I need another surgery. Said that I'm not decompressed ebough and the pseudo that was formed due to a csf leak. When the dura (covering of brain) was opened is when the leak occured. This is common. It's abnormal, but a common problem from this surgery. I'm waiting and getting more NS opinions. In alot of oain and the pressure in my head and neck are terrible. Hopefully I can hold out.
CHRISTINE
So sorry Christine to hear you are suffering too.Do you get positional headaches? worse on standing with dizzyness? Im seeing my NS on the 15th may,he is so arrogant and acts like he is god!!! so not expecting much at all.My Nl like yours woudnt pass much comment either,he just said you need to speak to the NS there is nothing I can do for u.Surely if it was going to repair itself like I have read it can,it wouldnt still be there 6mths post op? I think thats what cause my chemical meningitis,had that for 8 weeks after surgery in which he wouldnt treat with meds but just multiple lumbar punctures!! think 12 all in all I had.Surgery was on the 8th Nov and I didnt get any steroid treatment for the meningitis till the 22nd Dec! do you suffer with lower back pain with you puesdomeningcele Christine? x
Christine said:
Hi. Im 8 months post op and I too have a pseudomenningocele. Neurologists tend to not comment about this and refer you to your NS that did your surgery. In my case, I went and got a 2nd opnion from another NS. My current surgeon was dismissive to my compplaints. Gid forbid he admit something may have gone wrong. New NS says I need another surgery. Said that I'm not decompressed ebough and the pseudo that was formed due to a csf leak. When the dura (covering of brain) was opened is when the leak occured. This is common. It's abnormal, but a common problem from this surgery. I'm waiting and getting more NS opinions. In alot of oain and the pressure in my head and neck are terrible. Hopefully I can hold out.
CHRISTINE
Denise, Sorry it took me a bit to reply- No it was never proven i had psuedo...because it wasnt "caught" when i was going back and forth to the local hospital they just kept giving me meds for pain and vomiting, never bothering to actually do a scan to check head until the 19th day...when my husband wasnt taking NO for an answer and i guess there was a wonderful doctor in the ER that day who was using his head to help mine they did a scan and- found all the CSF build up was so massive that i needed surgery right away to save my life and a shunt was installed..
i am "assuming" i had/have pseudomenningocele because of how you all talk about it and everything just seems to click!.
what the NL's and NS's dont get is they have us in this constant frustrating loop.
As I see it one (Nl) doesnt know what to do so they send us to the other(Ns), the other(Ns) doesnt want to be bothered because they are "too good" to be bothered and they send us back to the Nl hence the "loop"