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Spinal Fluid Leakage or Neuroma after MVD

Hi everyone,

Have any of you experienced spinal fluid leakage or a neuroma forming after your MVD? My surgery was in January and just 8 weeks ago I began noticing a fluid build up beneath my surgical scar. It has slowly tripled in size. Yesterday I saw the neurosurgeon who is concerned and said that if it didn't diminish in 8 weeks, I'd need to have surgery to take care of whichever it is. The area feels "squishy" and full, there is no redness and I have no fever or headaches.

I am trying not to scare or worry myself; but I am concerned and would like to hear from those who may have experienced this. The last thing I need is another complication or another surgery.

Pat

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Replies to This Discussion

Permalink Reply by Ally Castellano on September 1, 2010 at 8:21pm

Pat,
Make sure you keep checking in with your doctor often!!! I am not trying to scare you, but this not something to brush off. I had this after my 3rd MVD. It was horrible. Mine was just 2 weeks after. I kept saying to my mom, "look im a waterfountain" What they ended up doing hurt like crazy. They took out the stiches and put new ones in when I was awake with no meds...I remember screaming. It solved the issue though! It is for sure a spinal fluid leak? Do you have any leakage out of your ears or eyes?
Best of luck! And hope you are pain free!!

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Permalink Reply by Liz K. on September 1, 2010 at 8:32pm

Hi Pat,
I had a lot of squishiness around my surgery site for a long time but the doctor didn't seem concerned about it and said it would go away and it did.
Liz

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Permalink Reply by Tonya L on September 2, 2010 at 1:54am

Hi Pat. I have not had a MVD but I did have surgery years ago for an Acoustic Schwanomma (thought to be a neuroma at first..I don't understand the difference!) that they were unable to remove due to the tumors intertwining throughout nerves but did a decompression instead. A few weeks later, same as you, I noticed a soft spot. After going back to the neurologist, he told me not to worry, it was normal. Ok...that was 10 years ago. I now have TN due to those tumors and additional ones. I have a "bubble", I guess you could say, that comes up every day, like a round hard knot and makes the side of my head hurt even worse. One day I was rubbing the area rather hard and it POPPED! Under my skin. Just crackled and popped like the cereal. My husband even heard it across the room. It totally freaked me out! When I went to the neurologist on the day they finally diagnosed the TN, I popped the air bubble or whatever for her. Freaked her out but she didn't have a clue what it was...and neither does my other 2 neurologists..yet they haven't even checked it because apparently it doesn't concern them. So, maybe it really is nothing and if you get a bubble, I hope they tell you something and you can pass it on! LOL! Good luck and I hope it is nothing for you! God bless honey!

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Permalink Reply by Pat on September 2, 2010 at 9:32am

Ally, Liz, Tonya, thanks for your input. It almost feels like what a water blister or cyst might feel like, squishy and a bit harder than a water blister - under the scar. The scar healed beautifully (the only positive outcome of the MVD) until recently. Interestingly I had a cranio-sacral treatment and right after is when I noticed it. I called the cranio-sacral person and asked her what she did exactly. She said that she worked to release trapped fluid that wasn't draining through my lymphatic system and suggested that the fluid can't release because it's trapped by the scar tissue. The neurosurgeon thought that was "bunk".

My neurologist and PCP don't seem to be concerned about it all or know what to do about it. The neurosurgeon was concerned and said that on occasion something like this resolves itself but if it doesn't time to operate. Oh joy... the never ending domino effect of TN.

Pat

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Permalink Reply by Sarah Hobbs on September 2, 2010 at 1:48pm

A couple of things come to mind here. My chiropractor refused to treat my neck for the first year after my MVD for fear of causing problems while the site totally healed. I can not help but wonder if the crano scaral (sp?) treatment did not cause the problem. I had a major CSF leak out my nose, but that started the day after my MVD surgery not 7 months later.

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Permalink Reply by Pat on September 7, 2010 at 6:54pm

Sarah and all,

I too suspect that the cranio-sacral person (with all good intent) may have dislodged a stitch in the dura and allowing for leakage. I'm having an MRI this Friday that will hopefully reveal something. I wonder, has anyone else tried to help themselves to only have those things that were recommended backfire on them? I'm sorry to hear of the things that have happened to a number of you who have responded to my question. Yikes is all I can say... Pat

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Permalink Reply by Cathy Collum on February 24, 2011 at 8:33pm

PAT: DID YOU EVER FIND OUT WHAT IT WAS? I HAVE THE SAME THING BUT I HAD A CSF LEAK A FEW WEEKS AFTER MY MVD SURGERY AND THEY EXPLAINED IT AS A BUILD UP OF FLUID. SOMETIMES IS SOFT AND SQUISHY AND SOMETIMES IT GETS BIGGER AND HARDER. THEY SAID THE FLUID WOULD EVENTUALLY ABSORB INTO MY BODY. WELL IT DOESN'T SEEM TO BE ABSORBING BECAUSE IT'S NOT GOING DOWN AND IT'S BEEN ALMOST 2 MONTHS. PLEASE LET ME KNOW IF YOU EVER FOUND OUT ANYMORE. I GO BACK TO THE SURGEON ON MARCH 2ND AND WILL POST IF ANY CHANGES.

TAKE CARE!

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Permalink Reply by Pat on February 25, 2011 at 6:50am

Hi Cathy,

Funny you should ask right now. Since I wrote my surgical scar has opened and released things and closed up 4 times so far, yesterday being the 4th time. Each time particles of bone wax have come out along with fluid and blood. The new (second) neurosurgeon said that if it opens once more he wants to go in and clean it all out. He's been waiting hoping that my body could heal this on its' own because my surgical scar (from the first MVD neurosurgeon) is so close to my occipital nerve and that concerns him. It's now 13 months since my MVD and this is still going on! Sometimes I think that the janitor at Shand's actually performed my MVD - I'm the 3rd person I know of that now has AD and other complications from their MVD surgeries there. The fluid that released was tested and it wasn't spinal fluid, at least not yet. My fluid build up acts just like you described each time it's ready to release. I hope that you can get to the bottom of your situation sooner and better,presuming that you surgeon is far more interested than mine was. He just wanted me and my complications to go away and not bother him.

Pat

Cathy Collum said:

PAT: DID YOU EVER FIND OUT WHAT IT WAS? I HAVE THE SAME THING BUT I HAD A CSF LEAK A FEW WEEKS AFTER MY MVD SURGERY AND THEY EXPLAINED IT AS A BUILD UP OF FLUID. SOMETIMES IS SOFT AND SQUISHY AND SOMETIMES IT GETS BIGGER AND HARDER. THEY SAID THE FLUID WOULD EVENTUALLY ABSORB INTO MY BODY. WELL IT DOESN'T SEEM TO BE ABSORBING BECAUSE IT'S NOT GOING DOWN AND IT'S BEEN ALMOST 2 MONTHS. PLEASE LET ME KNOW IF YOU EVER FOUND OUT ANYMORE. I GO BACK TO THE SURGEON ON MARCH 2ND AND WILL POST IF ANY CHANGES.

TAKE CARE!

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Permalink Reply by Cathy Collum on February 25, 2011 at 7:45am

Pat: When it has pressure and builds up it stings like the incision is going to burst. Only one time (weeks ago) did a see a little bit of fluid coming out of it. They did one spinal tap after I started the CSF leak and they headaches are gone but I have this thing and they keep saying it's nothing to worry about. They say eventually it will be absorbed into my body. I asked about the build up of pressure and they say when the pressure in my body rises (for any reason, even a mood change) that can make it build up and get hard. I just don't think that sounds right.

Thanks for the information. I go back on Wednesday and I will see then what he says. I think he is going to release me to g o back to work. I just pray I don't need more surgery but I almost wish they could take a needle and just draw that fluid off. I still cannot lay on my left side and that's really aggravating.

Take care. I hope you find healing soon.

Cathy

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Permalink Reply by Pat on February 25, 2011 at 7:56am

I completely understand everything that you're saying. Months ago I asked for a needle aspiration too and was told that the risk of infection was too great so he wouldn't do it. At 2 months out you are still very early in the process so it's possible that it could re-absorb. In my case I couldn't trust or rely on my original neurosurgeon. I'd suggest that if yours releases you, you find out what your medical options are and with who down the line if it doesn't do what is hoped. I wish you the best - I know the anxiety that it can cause.

Pat