Spinal Fluid Leakage or Neuroma after MVD

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Permalink Reply by Cathy Collum on March 13, 2011 at 5:46pm

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.

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Permalink Reply by Pat on March 13, 2011 at 6:04pm

Cathy,

I had to speak to 2 neurosurgeons before I found one that would follow up with me - and thank God that I did.  The one I see now is wonderful and I only wish I had known of him to start with.  I was so motivated to get away from the one that did my MVD because it was clear to me that once I had complications, he wanted to drop me like a hot potatoe. 

What I'd suggest you do is ask for a copy of your operative report/surgery report from the hospital and see if it gives any detail as to your surgery and how you were closed.  If no one seems to want to give you that information, that is telling you something.  My fluid build up felt like liquid too yet there was something that made a noise in there too when I felt it.  Bone wax is a material that's used in some surgeries.  Apparently it was used in mine in my sinus cavity.  Why it was coming out of my scar is a whole different question which no one can or wants to answer to.  Good luck - stay persistent and be your own advocate. 

Pat 

Cathy Collum said:

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.

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Permalink Reply by Cathy Collum on March 13, 2011 at 6:51pm

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

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Permalink Reply by Pat on March 13, 2011 at 7:27pm

We're all in this together and we need each other.  Good luck,

Pat

Cathy Collum said:

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

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Permalink Reply by Anna Roth on April 2, 2011 at 8:34am

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.

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Permalink Reply by Gloria E. on April 2, 2011 at 10:54am

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.

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Permalink Reply by Pat on April 2, 2011 at 6:41pm

Anna,

I'm certainly no doctor and am not qualified to answer here.  The best person I can think of on site forum to ask would be Vesper.   In my situation I do not have headaches.  My incision has had a fluid build up under it since about 4 months after my MVD.  No one knew what it was (or is) saying they had  never seen anything like it before.  The surgeon was zero help.  Over the course of the next 8 months the area opened up and released small fragments of bone wax 4 times, filling back up again each time.  I'm waiting and watching now to see if it will finally stay closed.  There's a hole or gap in my skull that I can feel as well.  The new neurosurgeon doesn't think it spinal fluid leaking and would prefer that my body heal on it's own versus opening me up for another surgery to clean it out.  My ear feels numb and full, like I wish it would drain.  This is just one of the many complications that occurred with my MVD .  Hard to believe that I chose that route to avoid nerve damage and other complications. 

It sounds to me like it would be helpful for you to see a neurosurgeon who is familiar with AD and it's manifestations because your symptoms sound more like that to me from my limited vantage point.  Don't ever feel bad about complaining here; we all need an outlet and supportive ears at times.  I hope you get some answers soon.

Pat

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Permalink Reply by Anna Roth on April 3, 2011 at 6:20am

This is so interresting and so much thank you Pat for your .....don´t ever feel bad...! You are a lovely person that give me so much strength to fight on. I have this hole where my scare is and remember so vell that the doctor said that our bodies jucelly take care of the fluid. I have never that i know of felt that the fluid has leaked out but once a month i became so swollen in my body and also my face and a bit of the head becomes swollen. I talked to the latest Neurologist i went to this week and he gaved me Furix. Me myself belives that the infection i got and the swollen head has come up after the surgery and that this Cluster hedadache is a backside of what can go wrong in this surgerys. I don´t want to frightened anybody but i am like you Pat a living proof that thins can go really wrong. The Neurologist belives that i have got AD and want me to try ( I have probelly written this before but my memory isn´t the same like it was, so sorry if i repeate wath i have written before ) another medicine that is given to those who have diabetes and have neuropathik pain somewhere, even if they have lost there sence in that place in their body they get awful pain juat llike Phantom pains. I´m so gald that this Neurologist belived me, because when he write down those things it make my lige more easier if i have to seak help in emergency.
If i get an attack and my husband not should be able to come with me it will be hard for me to explain.
I can´t talk anymore when TN and this horrible pain by my temple and behind my eye come up. It´s just so awful that everything become black, i am not aware of things that happens around me....the pain takes away it all. Noices, people talking are so far away....i just have this pain, and it rings in my ear....pain, pain pain oh i just want the pain to leave me.......
After this attacks it has been harder for me to come back and i belive that is a big reason for that i have become so depressed, there is no really relive for me between the attacks....i have always pain in my face but it holds back by Lyrica but at least once a month the big attacks came and they are so strong has been so much worser than before. I have had fainting-fit and that have made me so afraid to be all alone if the pain starts. I do have emergency alarm a kind of neckless that i always where when i´m alone, i got it when i felld a couple of times becuase of my leg just fell down and then i fall to the ground to. But what if i "pass out" then i can´t push the botton to the alarm and i could hit the head if i fell.
Those things really scares me and i don´t ever go out for any long promenads jusdt to the mailbox outside and then i walk in again. My house has become a prison and i can´t get out of here anymore without help. That is so anojing and i can´t really belive that things have gone so far that iam like an old lady who is afraid to fall, and afraid to leave my home. In the beginning i had homecaring to come to my house and we walked outside, then i wasn´t afraid but this "walkes" once a week i had to pay bymyself and when they count who much i should pay they took my housbands earnings-realated per month in the counting aswell. It made me pay a thousand swedish krones for that service....it´s way to expensive for me and i can´t really understand why i can´t have this service to not costt me anything ! I am sick !! and i can´t help it !!!
Sorry but those kind of things make me really angry, the side of my life that i am sick is all enough by it self but always have to pay becuse yiu have become sick is sick byitselfes it only makes me more sicker.
To think about the economys choises every month makes me nervous......i belive that you people in the USA have the same problems. Here in Sweden i belive there has been a hounting for sick paople and they shallwork no matter hwo sick they are.
For me that means that in December i haven´t got any money more from the health insure, i just shall go to the work plavce and work no matter how sick i am. That makes me sicker !!

If i had an oppurtunitie to chose a wish it would have be to be healthy ! not all the money in the word i should have wish for, no just to be halthy that is worth more than to be rich.

I love you !
Anna

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Permalink Reply by Cathy Collum on April 3, 2011 at 4:54pm

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

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Permalink Reply by Pat on April 4, 2011 at 9:21am

Dear Anna,

I'm so sorry that you have to endure such horrible pain everyday.  Unless you have AD you simply cannot comprehend how much worse it actually is than TN.  At least with TN as bad as the attacks are; they are intermittent and there is a break.  With our type of pain there isn't.  Like you I get angry, scared, and depressed too.  Who wouldn't under these circumstances?  It isn't so easy to push through when you're worn down by the pain.  Do the best you can, when you can, and be kind to yourself the rest of the time.  Sometimes I think our expectations of ourselves in that state are too high.  It's as if we're chasing a "normal" that is not to be anymore. 

Yes, we have similar problems in the US with health care, costs, approvals for treatments/surgeries, and getting denied for disability allowance.   Just the cost for my Rx of Trileptal alone is $178/month, Lyrica is $243/month, and the bill goes on.  Our monthly insurance premium is $1,400 for my husband and I and the coverage isn't all that great!!  We don't have an employer (self employed) so the rates are terrible. 

I pray that you don't have to return to work at all.  In the meantime I think medication management is our only option at this point.  So I hope that you can find better pain coverage in case you do have to work.  That thought would make me angry too, Anna.   Every day that you get  up and face another day and make it through is a hero's journey in my book.  One day at a time is our best strategy, I think.  Good luck with your trial of Cymbalta; I hope it helps some.  Oh yes, I would much rather have my health than money for sure.  I don't get out either, Anna, and understand how debilitating the isolation is.  I'm so glad that you have the necklace as an aid.  Try not to scare yourself with all of the "what if's", which can be endless.  I tend to "awfulize" too when I'm worn out.  I wish you some  peace today and solace in knowing that you have a friend in me (and many others here).    Much love to you,

 

Pat 

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