Spinal Fluid Leakage or Neuroma after MVD

I retract this topic.

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!!

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

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!

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.

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!

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

So your surgery was over a year ago and you still have this issue?

I am sorry to both are going through this. Can see why it would be distressing. I am praying for you both.

It was 2 years ago last month that I had my MVD and the typical TN is still gone. The ATN landed me in the ER 10 days ago, but that was the first really bad attack I had in nine months so I am grateful.

Am now getting things in place to go ahead with the Deep Brain Stimulation surgery to control my tremor. Do not know what is worse. A MVD and a CSF leak coming out my nose or having to be awake for brain surgery. Neurosuregon told me the MVD would be worse. Time will tell.

I had some leakage out of my nose but it didn't last long. My CSF leak didn't last long but I immediately got this squishy place. I just wish they could tell me for sure what it is and how long it's going to last. I hurt in my neck if I do much straining at all. I want to exercise but I am afraid to do anything but walk. I do not know how you could go through an MVD surgery that was as painful as mine and consider it again. I just think everyone is different and has different experiences but mine was horrible and I can't imagine going through it again anytime soon.

Prayers going up for all of us for answers and relief. Take care.

I am having DBS surgery for a movement disorder not TN. The best stimulator for AD is a Motor Cortex Stimulator. Studies have shown that DBS does not work well for AD.

My CSF leak came out my nose for 12 days and I was flat on my back in ICU for 6 days with a lumbar drain in my back. This is a spinal tap needle that is hooked up to a closed drain unit so they can drain CSF off to lower the pressure. I do not regret having my MVD, but I will not do it again. I figure if it did not work the first time it will not work a 2nd time.

I pray that you both get some answers soon.

Sarah

Pat said:

Sarah,

I am very interested in learning how your DBS surgery goes - it's something that I am also considering for the AD that I now have. In learning about it, it scares me and yet so does continuing to live in this kind of pain. When do you plan to have the surgery and where if I may ask? Like Cathy, my MVD surgery is something that I will regret forever because of the intractable pain/nerve damage that was caused by it. There isn't a day that goes by that I don't wish I could do it all over. Hopefully one day I will find a way to move that nightmare to my side mirror and be blessed enough to have something better to view in the front mirror. Wishing you all the best,

Pat

Went to the surgeon today. Again he says it's fluid and will absorb into my body eventually and then it will be flat as a pancake. It is still very swollen. Still squishy at times and then hard. I have TN pain again and I am about to pull my hair out because when I told him I was having TN pain again he told me to reduce my gabapentin by half. He didn't seem to believe that it was TN pain. OMG...it's the very same pains I was having before surgery. It was the reason for the surgery. I wish I could see another doctor because I felt like he just ran out after I told him that. I told the receptionist I had more questions but she said he had already left. She said she would have him call me. Oh well...I am dealing but getting depressed and frustrated. Thinking about seeing a dentist again. I just don't know what's going on.

Cathy

Pat, if bone wax is coming out, it makes me wonder how your surgeon closed. I have mesh, plate with 5 screws and bone cement covering the hole in my head. Nothing was coming out the incision. Instead it came out my nose.

Hey Pat and Sarah: Okay. I get confused on this website so I am not sure if this is something I shared or not but week before last I yawned and leaned back and hit the swollen spot on my head with my fist. When I did it crunched...it was gross. So later that day I started having some pain...the place went down some and it was like I had another CSF leak. It only lasted a few days but I also got soreness in my neck and it lasted longer. Now the place is as swollen as it was before and musy again. I asked the doctor what was in the pouch in my head and he said fluid. I said then why did it crunch when I hit it and he said well it's tissue too....okay so what really is in there? And I hate to show my ignorance (which I do alot) but what is bone wax? After my surgery the surgeon told my mom that he wired my skull back in...I haven't thought to ask if there was anything else there. I do have to say that in about the last week I haven't had any TN pain so that's good. I honestly have so little information on my surgery and the CSF leak. I understand very little too. I feel so stupid when I talk to the doctor. He just acts like everything is fine. He has no idea what I am dealing with. I asked the PA the other day how long I could expect to have this pouch and she said it would take some time to aborb into my body and since I am a small person (which I'm not that small) it would take longer than normal. I asked her...are we talking months or years? She said "not years". That was the best answer she could give me. So anyway I would love to know exactly what they did and how they repaired my skull and what more to expect but I am not sure they have all the answers. I do wish I could fnd another doctor but I am afraid that most of them would not want to treat me because the one that did my surgery is very well respected here in the Charleston, SC area.

I hope you all are doing okay. I am better and hopefully every day I will see improvement. Take care.

WOW! Now that is scary and seeing that the surgeon barely talks to me and hands me off to the PA…maybe he let her do the surgery? Who knows. I doubt it but I just wish I could get answers.

Pat: Thanks so much for the advice. I will ask for the report and try to get some more info but if I don't get some definitive answers soon I really want a second opinion.

I will let you know what I find out. Thanks for your support.

Cathy

Dear Anna,

I've never had MVD or a CFS leak, but isn't strange headaches a symptom of continued Cerebral Spinal Fluid Leak? Can someone else give an opinion on this? I saw a documentary on the television about a woman with Cerebral Spinal Fluid Leak unrelated to TN and any brain surgery and she was having horrible headaches before she was finally diagnosed with Cerebral Spinal Fluid Leak and they did surgery to try and stop the leak. She also had a chronic runny nose, which turned out to be the Spinal Fluid leaking into her sinus cavities.

Has anyone ever heard of this?

Anna Roth said:

Hi Pat !

My MVD was done in 2008 and i got an infection after the surgery.....i got an "horse cure" with antibiotica. I was so swollen from the scar and down to my neck that i couldn´t mowe my head. After the infection was gone the doctors told me that the fluid that still was left my body itself should tace care of but i wonder.....I still have this feelin that there is fluid left and when i touch the scar it´s like a gap in my scull and i hear it so well in my ear....it´s like when you touch a big barrle of water. I juat can´t get any answers of this. I asked a neurosurgeon specialist if it´s possible after all those year that i have fluid left. Not the same fluid as then he said, but there can become knew fluid. What do you think about all this Pat ? Is this the same thing you mean here ? I can´t hear so well at my left ear anymore and it heart relly bad if i get cold. I´m so sorry for that i am always talking about my own problems but here is the only place that i know that someone can understand. I have become a member in a Horton group and that feels god, i can se what they write about this illness and i feel the same thing they do. Just like here but it´s a smaller group of people.
Sometimes i belive it´s the fluid that have caused me Cluster headache, that there is a connection between those things because i can´t remember having this awful headache before my MVD. Headache is perhaps wrong word, i don´t feel the pain in my whole head it´s behind my eye and with my temple and the pain is even worser then the TN pain in my face.

Anna: I wish I had words to encourage you but I don't even know what to say. I am blessed because even though I suffered extreme pain after my surgery and even though I suffered extreme headaches after the CSF leak, I am now in a better place. I am not 100% but very little pain. Mine is more soreness and stiffness in my neck. I have had what feels like TN from time to time but it is eventually gettting to be less often. I still have a sack of fluid in the back of my head at the base of my scar that is filled with fluid. It goes up and down. I am on prednisone right now because of the issues with my neck but nothing like what you are experiencing. I wish there was something I could do to ease your suffering. All I can say at this point is to keep pushing. I will pray for relief for you and also your financial situation. I too prefer health over all the money in the world. Hang in there. Keep asking questions. Keep seeking answers. Keep pushing through it all until you get some relief.

Cathy