I was recently diagnosed with a pseudomeningocele and am struggling with deciding whether or not to have it treated. My first decompression was in June 2005 and my second decompression (+ duraplasty) was in June 2010. I also had an emergency surgery for a subdural hygroma at the upper front of my skull (not near my other surgery sites) in August 2010. In October 2011 I had what felt like a return of my chiari symptoms -- headaches, pounding feeling/sound, and pain/headache with coughing or sneezing. This has progressed to include shaky vision with headaches, disorientation after coughing or sneezing, and a shock/tingling down my back when I turn my head to the right. My (new) NS feels that the symptoms indicate brain stem pressure and spinal cord involvement. He wants to do another surgery, which would include replacing my dural patch (this time with a myofascial dural patch), further enlarging the foramen magnum, and adding a temporary lumbar drain. Besides being extremely reticent to go through a fourth surgery, a likely outcome is...a pseudomeningocele. Really...again? So why go through all of this? BTW, my NS is unclear if the leak in there is still leaking or not. If so, it's a slow leak based on two MRIs. My increase in symptoms two years out from surgery does make me worry that the leak is still active.
My question(s): Has anyone ever decided to just live with the pseudomeningocele and how did that go? For anyone who's opted for surgically treating it, did you have to deal with recurrance? And finally, has anyone ever just had it drained in some way and had that work?
Sorry if this post is too long -- I'm new to this forum and wasn't sure how much info is helpful when asking questions. Thanks!!
poor u.u have been going thru a lot. well if the new surgery probably creates a pseudomen. i would have my doubts too. I mean that would cause big issues too. I would def get another opinion on that. I have to mention my story. I have blurred vision, face and neck pain turning to the left. my issue seems to be ´from muscle tension and I get cortisone shots now. I always thought its brainstem compression too. I even think there is a test called PESS here( Spain) to check if ur brainstem is compressed. u get electricity running from head to arms and legs and then it shows if signs are passing thru accordingly. a true specialist wont operate u again with these risks withoút running tests...dont let urself rush into nothing please and sorry, but some ns are just willing to operate on anybody.
When told our daughter had a pseudo after surgery the NS assured us this was not uncommon and wouldnt present any problems. Three hospitalizations later the NL put her on Topamax and Diamox and changed her life. The swelling is gone as are the headaches and nausea. She is back to her teenage self. The pseudo was causing compression and the meds lower the pressure allowing the pseudo to be absorbed. She was better 2 weeks after starting the meds. Better than surgery and she can go off meds after December MRI if everything looks good. BTW our NS also told us the pseudo could come back after revision surgery and advises against it. Also he said draining it is useless because it would come right back. The meds have been a lifesaver and side effects are minimal to none. Good luck!
Welcome to the forum. Only you can choose what you think will be best for you. I try to listen to my NS as much as possible but even with his recommendations, it still comes down to the fact that I have to make the choice. I had a return of symptoms after surgery 1 (they found the pseudo) so I felt it was worth doing the 2nd surgery. It was supposed to have been an easy repair and I just wanted to feel better. Instead I had a third emergency surgery and now have added a shunt and already had a shunt revision, and on top of it all, I still have a pseudomeningocele. I am frustrated, sore and sick of it all but I don't know if I went back to the beginning if i would really make any different choices because I made the choices because of pain. I have just had some bad luck. I blame my body and how it deals with things way more than my NS, I love my NS. I started with a different NS and a synthetic patch and I think that was a problem for me. With my third surgery I had the temporary lumbar drain, it was kind of icky but it is meant to help your head heal without the formation of another pseudo. For me I ended up with one anyway. No one can tell you what to do but my best advice is to trust your medical team. Like I said, I know my body does not deal well with anything so it is hard to know the right answers but if I did not trust my medical team this would be an impossible process. I know they really are trying to help me feel better. If you look at your images (MRI) you should be able to see if it look like brain stem pressure. You can see how the pseudo creates the chiari like situation, it just closes the area where they tried to make space in the first place so it really shows why the symptoms would return. My goal is to look back someday and say "I am glad I did this" some days that is not so easy to say and those head surgeries are no fun at all. I am looking at trying one more time and I just dread the thought but I really want to feel good again. I wish you luck making your choice. -zygy
After my first surgery I probably felt good for the first couple of months. From about three months I started to think something was wrong. It slowly increased to a point where I asked my NS about it but it was not standard there to do a follow up MRI to get a new base line image. When the Cough headaches increased enough to be driving me crazy I finally started a hunt for a new NS and it is not easy to find a good NS so it took a while and then when I did find one that I wanted, it took about two months I think to get an appointment so I did not get a new MRI until about 9 months post op. I had my second surgery about one year after my first, it was supposed to be quick and fairly easy because it would not require bone removal BUT my NS did not know that the bovine patch stuck to my cerebellum so when they closed the leak the fluid flow was weird and did damage to my cerebellum and I was back in for emergency surgery about two weeks later. For surgery three he used my own tissue for a patch and that was why I had the temporary drain put in. They did my follow up MRI at about 3 months post op and there was the pseudo. I already knew it was there, I could hear it. If I tap the back of my neck I get an under water type of sound. I was hoping I did not have it but in my heart I knew it was there. My NS figures that the pressure is a bit high so either I could do the brain surgery again and stay in the hospital for a bit with another drain or I could try the shunt and hope it allowed the pseudo to close. My pseudo is smaller but not closed yet. We will look at it again in 6-8 weeks. I hate the shunt so I really hope I can get it out. If the pseudo is still there in 6-8 weeks I will probably go ahead with the brain surgery and just get this over with. Hopefully with the shunt it would allow it to heal without a pseudo this time. The shunt did decrease the size of the pseudo and it did improve some issues. LOTS less neck, shoulder and back pain. I have now had the second pseudo for over a year, it has been quite the process. It is very hard to know what to do and when to do it and that is why I think that having trust in your NS is so important. I was back in the hospital today because my shunt is messed up from the MRI and if it were not for how kind they are to me, I think I would go crazy. It is so hard to hurt all the time. Do you have copies of your leaks? IF you look in my photos you will see my leaks. I have not posted the latest pic but I hope to soon. My current issue has me laying down so until I can sit or stand for a while, I just can't load the pics. It is hard to know what is right to do and you just can't know what will happen. It is just not a fun surgery and it stinks to think about doing it again!
Wow, Zygy -- you've been through so much! My symptoms have really ramped up over the last week and so my "to treat or not to treat" question is suddenly moving more into the "when I treat" realm. I haven't had a break in headache in a week and a half (I know, not bad in chiari-land, but something I haven't dealt with in a while). Also, my dizziness is severe and I had a blackout the other night as well. I scheduled with my NS for later this week and am expecting that I'll end up scheduling surgery soon...
If you have had any treatment will you please post here? I have had a pseudo since 2009 and have not had it treated. I was on topamax and while there are a whole host of symptoms that come with that (it makes you stupid more or less), it does lessen the pressure.
I ended up deciding to treat the pseudo, but it turned out to the the least of my problems. There was a quarter-sized hole in the center of my dural patch (hidden in the MRIs by the collection of fluid). My NS drained the pseudo, re-patched the dura, and spent hours separating adhesions. I spent 8 days in the hospital and am about 6 weeks post-op now.
I know this probably doesn't really help with your situation. Are you considering treating your pseudo?
Sounds like my luck! I find out Thursday how I am going to treat my pseudo but I am worried about the same crap... everything that can go wrong seems to! Sorry you had to go through so much again! How have your post-op weeks been? What type of patch is in your head this time? I am afraid of finding they need a new patch.... don't want mine harvested again because my head still feels weird from the last one but I know I can't use synthetic because of it sticking to the cerebellum so if they have to do a new patch it would be a pain!!! Long hospital stays stink too.... what a mess this all becomes for some of us! I would really like to stop having surgery, I am sure you feel the same way! Have they done a new MRI to see if your leak is gone now? I hope this time it worked for you and that you are feeling strong and healthy soon! -zygy
Hi zygy. My post op weeks have been full of ups and downs. Some swelling that makes me nervous and a pressure headache the last few days. I'm having an MRI this week, so we'll see. My doc wanted to wait to see what type of patch was needed until he got in there (a new NS this time, thank goodness) and I ended up with another bovine patch. My NS just emailed me photos of the hole in the patch and his repair. I would post them if they weren't so gruesome -- they have me nightmares, literally! I had no idea that the stitches were permenant -- bright purple on the white dura. I have to say that my new NS is light years ahead of my old one in his sewing skills. The long hospital stay was rough, but was a precaution. I did five days in ICU with a lumbar drain lying completely flat (no exceptions). They drained off 30 cc's of CSF every hour round the clock for the five days, which helps with pseudo-prevention. It doesn't always work, but it gives me the best chance of the space not filling with fluid again. Did they do a lumbar drain for you? Also, my NS was considering a patch made from the facia of my leg muscle -- maybe this is a possibility for you too? Have they ever talked to you about it?
Hello :) Sorry to hear the last few days have been weird! When you have been through so much it seems like everything makes you nervous!!!! I fully understand. You will have to let me know how your MRI this week goes :) I have mine Thursday and will get the results immediately (meeting with NS right after). I am 99% sure I still have my pseudo, I would love to find out that it is gone but I have my doubts! You can lock your photo's I think to just friends if you want to hide gross stuff (would love to see your pics just out of pure curiosity). I am sure it is gross but I think I could deal with it, after all, we know they have been doing strange things to our heads! I still have nightmares too sometimes, it has just been too much! Three years and five surgeries later I am just sick of all this! Glad to hear you have an NS that you like! I love mine too and think I have just had some bad luck more than any mistakes being made!!! It helps to have confidence in what they are doing :) Long hospital stay really stinks! I was 9 days after my third head surgery and it was horrid. I had the stupid lumbar drain too and it was NASTY... and did not end up working anyway! I still have a pseudo a year later! Beginning of this year they put in a lumbar shunt to try and drain the pseudo without doing the head surgery again but so far no luck! Last MRI showed it was still there, will find out Thursday if it is STILL there... then I can just choose to fix the head because I HATE the shunt!!! I want this thing out so bad! It is giving me daily low pressure headaches (and not draining the pseudo, did make it smaller but not gone) I have already had a revision too so it is just a pain in the butt!!! Sorry to hear you had to do the drain, that was so icky!!! My back was constantly soaked and it was so uncomfortable! Not to mention that being in bed that long just hurts! I hope you don't have a pseudo this time!!!! In surgery three they had to remove my bovine patch (stuck to the cerebellum and doing damage) so they harvested my own tissue from on my head. I have my own tissue now but I still have a leak... it has been a long annoying few years! Thursday I will know the new plan and no matter what have to get ready for surgery! Either the head again and then shunt removal later or just the shunt removal if the pseudo is closed!!! Sadly, it is nice to hear from other people that have had things go a bit wacky :) Makes me feel more normal for a second! Best of luck to you and I hope your pseudo is gone!!! -zygy
Well HELLO pseudo twin!!!! It has been a while :) Missed ya!! I had hoped you were just feeling better!!! I go today for my MRI and will get results immediately since I have to have them re-adjust my shunt after anyway! I feel like it is still there so I am bracing for the news that I have to do the head again too!!! I guess I still have a chance it is gone but I am getting more and more head pains it feels like so I think something more than the shunt over draining is happening. Find out at 1pm!!! When do you find out about your MRI results? Make sure you let me what is happening!!!! I found out the hard way that the patch was stuck!!! They went in to fix the leak (surgery 2) and after days of problems and taking steroids and such all of a sudden the neurological stuff was INSANE! I could not even move because the vertigo issues were HORRIBLE.. more horrible than you can imagine, I describe it as being tossed backwards into the grand canyon in the dark! My family called an ambulance, by the time I got to the hospital I could not even touch my nose! Things were getting bad fast! He opened me up again (emergency surgery 3) and found that the patch was stuck and it was changing the flow of spinal fluid and it was drilling a hole in my cerebellum! He said he never saw that happen before... of course! So that was how they found the problem :) I do worry about what this patch is up to and why I am still leaking but at least that synthetic stuff is out of my head!!! My daughter is being tested for EDS, if so than I will probably try and get that diagnosis and it might just explain why all this crap is still happening! POTS is really bothering me though, I don't have much for answers with that either. Just one big mess!!!! Hugs to you! -zygy
I found out about 2.5 years ago that I have 9mm CM. I got the fossa decompression yada yada on 9/16/2010! I went to the NS a few days later she gave me a once over and sent me home! I have not been back since....no MRI nothing! Now I feel so friggin weird I don't even know what is goign on! My neck and the base of my head hurt all the time! I never ever wake up with out a headache! It goes away after a bit of walking around and if it is really bad I take advil. There is no laying down confortably ever! I am not a big go to the Dr. kind of person so I feel like I am cryin wolf. In the last few months I have weekness in my legs and arms and face. Can't think straight! Lightheaded! Dizzy! Sweats! Shaking! I think all this feeling like crap is givign me anxiety which is making everythign ay worse! I get vertigo all the time now since the surgery! I only had nasty headaches...which led to the MRI...which found the CM! Now I am a friggin train wreak! I have been to many Dr's just to rule everything else out...gynie...heart...blood you name it! All seems well....so I called my NS! Went to see her......she did not have anythign to say...she thinks I am fine and I can get an MRI if I want one! Well....ya! I gotta see if this thing is cool right! After reading all the issues you guys have had after you first surgery I am trippin out! I don't know if I am losing my mind or is something is really wrong! I hate going thru all this if only to find out it is in my mind! I feel like a total ****.....one in a ton of pain that may be real and I may be creating myself! I have never been this person...I am embarrased and scard and 500 other things! I have an MRI scheduled for 11/26 I am scared that they will find something and equally scared that they wont!
I do not know if ur NS was a true Chiari specialist....but too many that have had issues post op found that the NS did not check them for related issues or something that one that does Chiari surgeries on a regular basis and does research would know to do....the fact u did not have a follow up at 6 weeks, 6 months and then a yr post op MRI...seems odd....
The MRI will check to see if u have scar tissue, and if u might have a leak or other obstruction that may have occured or not been helped via the surgery....U should also check to see if u have EDS to see if u might have a related issue to having had surgery...
When did u start to have issues since ur surgery was in '10?
Oh, my pseudo was found five months ago. My pcp dropped me from her care after finding it. I still cant figure that part out. Unfortunately, that ended my ability to continue on pain medication that she had been prescribing to me for the past several years. Now i am in agonizing pain. And i can no longer walk because i am so dizzy i fall on the floor every time. My headaches are too painful to describe. They are over a 10!!
Hi this is an older thread and the member you are addressing your comments too has not been an active member here recently....so you can send a PM ( private message) which will generate an e-mail letting her know someone is trying to make contact.....
Or you can post on a current thread and address your questions to current members....
I totally feel your pain...... I was diagnosed with Arnold Chiari malformation I May of 2013 and had it corrected........ in the following year 2014 I started experiencing weird symptoms !!!!, having seizures (and I don't have epilepsy) I also started passing out...... my vision was shot !!!! Worried I made an appointment that December and was diagnosed with a PSEUDOMENINGOCELE which is a rare occurrence in adults..... Jan of last year I went in for my second surgery and was sent home 5 days later........ when it came time for my follow-up appointment I was rushed into hospital for a third surgery......... I had developed a large CSF in the back of my neck at the previous surgery sights. The Neurosurgeon found that my body keeps on rejecting the artificial mesh so what he had done was harvest a piece of the lining over my thigh muscle and surgically placed a SHUNT to drain fluids when necessary......... It is now 2016 close on May month and I still haven't had any re-occurrence......
If you'd like to contact me you are welcome to email me on nm.***@****
Hello Rouge1811! I'm sorry to hear you are going through so much. I have a similar story, and have learned that we are all in the same boat with Chiari. I was diagnosed in 2008, had decompression surgery in 2009 that included laminectomy of C1 and C2, a dural patch, and shrinking of the tonsils. I had to have 2 more surgeries with the following 2 months for a huge CSF leak, and ended up with a lumbar drain for a week. I was cleared for a few years, but headaches continued...although the pressure wasn't there any more. That brings us to 2 weeks ago...I had a MRI for worsening Chiari symptoms, and it turns out that I have another pseudumeningocele. I will see a new NS next week. Good luck to you, and I will try to update.
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