2 1/2 months post op and fluid build up???

[missourimama]

I had Decompression Surgery on Feb. 11, 2010.  Since surgery I have had a fluid filled bubble to the left of my incision.  Some days it seem smaller and others it seems bigger.  I went to my post op appt.  and was told by the Neurosurgeon that it was probablt a leak and it would resolve on its own.  For the past week now I have been having bad headaches and fatigue and the bubble is about as big as a Large Avacado.  I have not called the Surgeon or my primary.  This has been an on going issue and they both make me feel like I am a bother.  I thought that this surgery would be my new beginning but the nightmare has gotten worse.  I am in Missouri and the Doctor that I have did his intership with Dr. Oro @ MU.  I feel alone.  I feel like as soon as the surgeon does the surgery, he is done with you.  Has anyone else been through this?  Did it resolve on its own?

[selmaS]

  Hi Rosie and welcome to the Chiari forum.

First you need to look at what all was done during your surgery....sometimes the Dr will do a less invasive procedure and not open the dura, this can have short lived benefits and could lead to more surgery.

It is also important to know how much bone was removed ...as it too can cause a blockage if not enuff was removed...this would be a reason for excess CSF fluid to build up.....

Another possibility is if you did not rule out EDS as a related condition you may have,, if the dura was opened and a dura patch placed...depending on what type of patch could be a reason for excess fluid to build up....

So it really depends on what all is going on if this issue will resolve on it's own or not.

[Rosie08]

I had Chiari surgery April 2015. I've been getting headaches again and I have fatigue really bad. My Dr. ordered an MRI which showed fluid on the brain. Actually it has increased a little since last MRI. Is this something that will go away on it's own? I already contacted my surgeons office to review the MRI and never heard back from him.

[selmaS]

  Hi..and welcome to the Chiari forum.

Sounds like u have a leak, and they will either put u on bed rest with plenty of fluids....or try a bloodpatch, this is done if the leak is small enuff, so it depends on how much of a buildup u have...sometimes that have to drain it, can be with a shunt, and sometimes with meds......They must also rule out infection.

Did u have a dura patch?...if so what type?....sometimes it is a rejection of the patch and it needs to be replaced.

  There are many diff options as u could also have developed ICP post op.....only ur Dr can say for sure, when do u go to see him again?

   "selma"

[jamila43]

I had my surgery on October 31, 2011 I have pain and swelling in incision had a cat scsn, it came back that I have fluid build up below the incision what will happen how do they get the fluid.

[selmaS]

Hi, that swelling is often referred to as a A pseudomeningocele.
It is an abnormal collection of cerebrospinal fluid (CSF) that communicates with the CSF space around the brain or spinal cord. In contrast to a meningocele, in which the fluid is surrounded and confined by dura mater, in a pseudomeningocele, the fluid has no surrounding membrane but is contained in a cavity within the soft tissues.
Pseudomeningocele may result after brain surgery, spine surgery, or brachial plexus avulsion injury.
Treatment for pseudomeningocele is conservative or may involve neurosurgical repair

[max666]

hi all. I was actually going to post a question but saw missourimama's post. I to have a bulge around surgery site and neck which also changes in shape. I had surgery on the 28th July 2010. Is this swelling normal (surgery about 5  1/2 weeks ago) or is it something i should be concerned about?

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry u had to undergo soooooo many procedures at such a young age.

How r u feeling?...is ur dr a true chiari specialist?.....have they ruled out related conditions like tethered cord, syringomyelia, Sleep apnea....Ehlers-Danlos......

Please keep us posted as to ur nest procedure...and I want u to know we r happy to have u join us here, but we're not happy for the reasons that brought u here.

"selma"

[sharna690]

Im in the same boat? ive had 6/7 operations and im only 13 :/

[angiebaby78]

I too dealt with leaks after my PFD, I went through steroids for treatment and lumbar drain.  Ended up with an LP shunt, the pseudomeningocele went away and so far the symptoms have been gone too.  

Never feel like your a bother!  We are our own advocates and know better than anybody else what is going on with our bodies!

[608lion]

As Selma and Carolyn said don't let them make you think you are a bother! I can tell you from my surgery I had a leak from the surgery sight had it stitched, went to my NS and he told me it was a pseudomeningocele(which he hadn't seen for 3 or more years). They did a lumbar puncture which brought the bulge down for about 10 days and then it started getting bigger again. It would be kind of hard when I would get up and as the day went on it would get smaller and kind of squishy. I then had another leak and another lumbar puncture,which lasted another ten days. It came back, they had scheduled a surgery to repair it but there was a mix up at the hospital, so a didn't have it repaired. Anyway it finally went down by itself but I have this indent at my surgery sight. On my post-op MRI it shows I still have a small pseudomeningocele.
I don't know if this is any thing you are dealing with but they should be on top of things!!
Take care!!!

[*Stormy*]

Hello and welcome!

My opinion on it is that if at anytime you are feeling worried about what is happening to you then you should be able to call w/o feeling like you are bothering them!! That is their job and the fact that it has grown so much in size is a concern to me! I think that if you have a leak they should be checking up on it to make sure it DOES resolve itself.

I was lucky enough not to have any leaks after surgery...but if I did, I am pretty sure that my NS wouldn't have been bothered by my call. So, if you don't start feeling better soon..go ahead and make that call and don't worry what the drs think!!

Good luck, I really hope it resolves soon for you!
Carolyn

[nmj1973]

I am from Missouri too, and I was just diagnosed a few weeks ago and I am being referred to a neurosurgeon at MU (I'm not sure which one yet, I should get more info next week). So far, my local Dr. and Neurologist have had decent bedside manners, and I'm hoping the surgeon I see will be good to deal with. I'm so sorry that you are frustrated and I hope that you will be able to get this resolved.  
Nicole

[selmaS]

Hi and welcome to the Chiari forum.

Well for starters with ne potential CSF leak....rest, rest, rest...plenty of H2o and caffeine should help a small CSF leak heal on it's own...but at least 5 days lying flat and getting the fluids will help.

If it doesn't resolve, u may want to ask about a blood patch. Surgery for this like nething else should be a last alternative.

U r still in the early stages of healing...knowing u can still be healing for up to 2 yrs.....

Not all drs have the personality or bedside manor we would like...do not let them convince u  that u r a bother this is ur health...push for answers no matter how they may feel slighted....u pay them to work for u!!

hang in there it will get better : )

I am happy to have u join our little family here, sorry the reason u had to seek us out.

"selma"