CSF Leak for 7 months - 5 surgeries failed, still leaking…

[dsharron]

I was diagnosed with an Acoustic Neuroma in July of last year (2009) in my right ear. My symptoms were: loud ringing, seeing double, losing my hearing, off balance, unable to tolerate smells and nauseated. Because of my Pacemaker, they were unable to do an MRI, just a CAT scan, so the doctors were not certain as to the size of the tumor. In September they successfully removed a benign tumor the size of an egg, which had spread over and attached itself to the brain stem. About two weeks after, I passed out at home, hitting my head and rushed to the ER. About a week after, I started leaking CSF fluid.

My 1st post surgery, the doctor went in through the original incision above my ear, attaching muscle tissue with glue.  It started leaking again after a few weeks. Then he injected glue through my ear, on three separate occasions in the span of a month, stopping the leak just for a short time.
Post-surgery # 2 – was a repeat of the first surgery.  
# 3 – He went into the same area and used extra muscle and took bone, grinding it into a paste, to try and seal the hole.  
# 4 - The doctor did a Mastoidectomy (removing the ear drum & parts) sealing the area with more muscle tissue & also filling the Eustachian tube with muscle & sealing the top of the tube. This one lasted five weeks.  
# 5 - Another Doctor went up through the nose to seal the lower end of the Eustachian tube. While they were cauterizing the skin area, the machine caused my pace maker to cut in, and the doctor wasn’t pleased with the seal. It   lasted for about two days. I have not had a lumber drain yet.  

I am still leaking through the right side of my nose or down my throat, depending on my position.
My doctors are now looking at opening the skull (Craniotomy) above the original opening incision, to seal the leak from the inside. They are planning to do a lumbar drain at the same time.

My Question: Is anyone familiar with this procedure and where it’s been performed, and what has the success rate been?

Thank you for taking time to read about my journey so far… I’m looking forward to your post.  

Blessings,
Derick

[Lizard]

Well that sounds like quite the ride, I'm so sorry you are dealing with an unrelenting leak.  I had a leak after surgery and the fluid was mostly going down the Eustachian tube down the back of my throat.  The ENT who did my original surgery did a mastoid obliteration. Where he went in right behind my ear, basically pealed it forward and drilled into the mastoid bone.  He put in a bunch of "fat" artificial I assume because I had no fat sucked or taken out of me and he also used bone paste.  I had no further leaks.
Have they tried going in right behind the ear?  Much less surgery than the craniotomy, although still not fun.  They had a pressure bandage on my ear for 2 weeks and that seemed to help keep the seals in place.

This leak is so scary and can can end up with infections or even meningitis.  Hopefully you are taking precautions and staying in and resting a lot.  Have you had headaches at all?  The throbbing kind right in the forehead?  Those are the worst and what caused my surgery to be an emergency, which kept me flat out on my back for days.

Keep us posted, hopefully you find a doctor who can really get this thing under wraps, because in my nonprofessional opinion its totally unacceptable that they've tried to fix it so many times.

One random question before I go, you don't smoke do you?  Only reason I ask is that something to do with the nicotine won't allow the bone paste to cure and the leak will occur.  Not trying to accuse, just an idea.  If not good, if so quit for the next surgery 

Take care,
Liz

[TP]

I am so sorry you are having these problems. I don't believe folks realize how scary a CSF leak can be. I never had any leakage from my nose only from my incision. After my AN was removed, it took about 2 weeks and I had major leakage from my incision (towels would be soaked several times a day). I went into my Dr's office where he gave me stitches in my incision (without novacane) to see if that would help, it did not. I went back into the hospital and had surgery to repair my CSF leak. I got meningitis and was horribly sick. I was sent home with a pic line and had to take antibiotics several times a day. A few weeks later my incision was leaking again, this time went back into my Dr's office for more stitches (without novacane - hurt like you can imagine). Still leaked and went back into the hospital where they did a lumbar drain and didn't have much luck so another surgery to repair my CSF leak. This time they pulled my skin so tight that nothing was going to leak out of my head. That was middle of July (6 weeks after my AN surgery) and have not had any issues since. That was July 2006.

As far as a craniotomy, I have a relative who has had this surgery twice due to swelling in her brain. She had some complications from her first surgery (that was back in the 90's), however her second surgery (last couple of years) seemed to be more successful, she had some type of device that can regulate her fluid in her brain where they don't have to do another surgery. If I recall she has a tube that runs down inside her neck into her belly where the fluid drains.

I sure hope everything works out for you. Please know that you are in our prayers. Please let us know how things work out for you.

[CHD63]

Derick .....

WOW is about all I can say, except that I am so glad you found this forum. There are many wonderful people who post regularly on this forum, with many different experiences with ANs.

Fortunately I did not have to deal with a CSF leak ..... but trying to fix it five times and considering a sixth!  That is unbelievable.

In the meantime, do get plenty of rest and stay away from contagious illnesses situations.

Let us know how you are doing ..... now you have a whole bunch of us concerned about you.

Many thoughts and prayers for successful treatment.

Clarice

[dsharron]

Thanks for your posts...

Thankfully I have not had a lot of headaches. The day after my 4th post op, the headache was so bad I had to to ER. I think that may have contributed to that leak. I'm not a smoker.  Thanks Liz
TP, that must have been scary! I experienced extreme pain on my 3rd glue injection. Not fun... Thanks for your prayers.
Clarice, thanks for your encouraging comments and prayers.

Does anyone know what causes AN? I saw the show Dr Oz had on cell phones usage contributing to it... My AN was on the RH side, same side i used my cell for 15 years. Just a thought...

[painter]

Derick,
I am so so sorry that you've had to go through this.  What a nightmare. One CSF leak is enough to deal with.  I started leaking through my nose ten days after my initial surgery to remove the AN. Who knows what the cause for the leak was, I wasn't that knowledgeable or concerned about it at the time.  At any rate, they opened things up in exactly the same location to reseal everything over again.  I had belly fat taken to plug the hole, then a bone paste over the top of that. This was back in December 09, and so far so good.  But I live with the concern of it happening again. I can't imagine the number of times you've had to deal with this.  I feel for you, but don't give up, maybe a reputable neurosurgeon would be more helpful. My surgeon did mention that if it happened again, they would go right for the "shunt" that does indeed take the fluid down a tube and into the stomach.  I have a friend that had to have one, and he feels great.  There is a lump on the top of his head where the valve is, but that's all you see.  As much as I would like to avoid a shunt, I would chose that over having my head opened again.  It takes too much to recover from that.
Stay strong, I'll be praying for you.  And by the way, from your picture, you look way to young to have a pacemaker.  I'm just 60 and going in tomorrow for stress tests to see where I stand with the ol' ticker.

Tom

[4cm in Pacific Northwest]

Derek,

I did have CSF leaks and was dealing with it out-of-state, alone away from my surgeon. My doctors here were of little help to me during that scary stage. It was very frightening. I have empathy for you there- HUGS!

Shunt option?
I was one of the few that managed to avoid the shunt as the brain swelling went down and the leak, coming from my nose, seemed to seal itself off. I avoided any exertion and we also had success with very strong drug diuretic drug known by the brand name of “diamox” (nasty knock out drug best taken before bedtime… and must not be stopped abruptly but weaned off of slowly) However it sounds like your CSF leak has gone on WAY too long and it is leaking from the incision and not the nose (as was my case).

I am thinking if you had a headache and actually passed out that you may have be dealing with hydrocephalus (excess build up of Dura fluid around the brain) after the surgery due to swelling.

It is sounding to me that patching leaks is not working and that you need a shunt put in. (I won’t even start in the skull putty debate. Know that my neurosurgeon will not agree with that method and I also discovered was the case with many surgeon at the Chicago symposium when I brought this up. It is a touchy issue as they sort of agree to disagree on that topic.)

Quick link explaining the excess pressure of fluid up on the brain known as hydrocephalus
http://en.wikipedia.org/wiki/Hydrocephalus


So you do not want the fluid to stay in and build up pressure however you do not want it to leak out uncontrolled as this leaves access for bacteria to get to the brain… worse case scenario is meningitis.

Hydrocephalus?
This link will explain the different types of hydrocephalus: congenital, NPH, and result from head trauma (or brain surgery)
http://emedicine.medscape.com/article/1135286-overview

Here is a video about hydrocephalus that explains how a shunt can make a BIG difference. It explains what can happen if the fluid builds up. They interviews Dr Harold Rekate, MD at Barrow Neurological Institute who explains the process of the shunt for an NPH patient. Yours would not be a NPH case as yours is from brain surgery nevertheless the concept is the same… as is the shunt process.
http://www.youtube.com/watch?v=fm0CZh_X-vM

See an expert!
Here is Harold Rekate, MD ‘s link
http://www.thebarrow.org/About_Barrow/Bios/Group_3/Rekate_Harold_L_MD/index.htm

I suggest you have your physician contact him since he is also in Arizona. You may want to consider contacting Dr Marc Swartz- neurosurgeon at House Ear Institute.
http://www.houseearclinic.com/schwartzMS.htm
He would not just be an expert on the acoustic neuroma but also CSF leaks too.
(Last I know he was a skull putty advocate – but that may have changed since I last spoke with him)

Your CSF leak has gone on WAY too long   and you need to take some assertive action here.


Your locale?
I am trying to figure out you locale being that you have “Phoenix, AZ &
St John's, NL” on you signature. Are you a Canadian Newfie who went to Arizona for Surgery  (I am Canadian who resides in Oregon who went to California for surgery so that is why I am making a wild, yet maybe no accurate, guess)?

"The cause" of AN tumors?

Does anyone know what causes AN?

We do NOT know the cause of AN tumors yet. The cell phone thing has been hashed out in MANY posts the last few years.  We do know there is a genetic component to the NF2 type tumors and research is being done to see how AN tumors are linked to the non-NF2 type also. This is THE scientist that is doing the research on finding “the cause” and leads a team at House Ear Institute (HEI) in research.
http://newsroom.hei.org/pr/hei/102512.aspx

He also works with Dr Brackmann on the project related to regular AN's  but more specifically the NF2’s genetics.
Here is his link
http://newsroom.hei.org/pr/hei/102519.aspx
(He is the grandfather GURU in the Acoustic Neuroma world… I just adore that man!   )

I asked this “the cause?” question myself a few years back and consequently we make sure some of our corporate employee match donations go to that research project. As far as I know there is not another institute in either Canada or the USA researching to find “the cause”. And yes I did inquire at Stanford University too- before contacting HEI.

I am going to suggest that you not put too much effort in “the cause” research just now  but get that CSF leak taken care of ASAP. The risks of this not being addressed properly are too high.


Keep moving forward and get that addressed.

Please also keep us posted as to you progress with this.


I am SOOH sorry you are dealing with this right now. ANother cyber HUG.


DHM

[4cm in Pacific Northwest]

Ken meet Derek. Derek meet Ken.

Consider yourselves virtually introduced...

http://anausa.org/forum/index.php?topic=12432.msg143516#msg143516

You are both leaking but know you are not alone. Be sure to read the ANA archive link I provided about others how have been through what you are dealing with.
http://www.dinagoldin.com/anarchive/csf.htm



DHM

[4cm in Pacific Northwest]

I am still leaking through the right side of my nose or down my throat, depending on my position.
My doctors are now looking at opening the skull (Craniotomy) above the original opening incision, to seal the leak from the inside. They are planning to do a lumbar drain at the same time.

My Question: Is anyone familiar with this procedure and where it’s been performed, and what has the success rate been?

Blessings,
Derick

Shunt option?
I was one of the few that managed to avoid the shunt as the brain swelling went down and the leak, coming from my nose, seemed to seal itself off. I avoided any exertion and we also had success with very strong drug diuretic drug known by the brand name of “diamox” (nasty knock out drug best taken before bedtime… and must not be stopped abruptly but weaned off of slowly) However it sounds like your CSF leak has gone on WAY too long and it is leaking from the incision and not the nose (as was my case).

Derek,
 I just re-read you original post in more detail as I realized I misread it the first time as I initially  “thought” you were leaking at the incision site and not the nose- now I read otherwise. Sorry I muddled a detail there.

Regardless this is too long. You need to get a lab to test the fluid coming out of the nose. It sounds like your “team” has already tried to seal it from the nasal area… my surgeon was going to try the ear drum route if mine did not clear up- on its own. Which it did...

If you are indeed in Arizona I would think that Dr Harold Rekate would be THE guy to see since he specializes in CSF- specifically. The headaches MAY be a flag about pressure in the head not being normal.

I am still trying to figure out your signature of both NL (Newfoundland) and AZ (Arizona)…

You are a Canadian snowbird who enjoys winter in Arizona and summer in Newfoundland? (My retired next-door neighbor spends his Pacific Northwest winters in Arizona… I think he is on to something good there    )

Or are you are in the military?

DHM

[dsharron]

Hi DHM,
Thanks for your info... After living in the US for 16 years, I moved back home to Newfoundland June of last year, and found out about the AN in July...  I live in St John's.
Doors are opening as I write this post, It's possible I may be going to the www.HEI.org in LA to hopefully have my final surgery. They are world renowned in this field.
I will keep everybody posted...
Thanks
Derick

[pjb]

Hi, I haven't been on here lately just getting back to reading the posts I am so sorry all that you have been through. But like you stated you are going to HEI, there have been many many positive posts regarding HEI, I am sure you will be in good hands. The statement that was made about Dr. Oz and cellphones I just wanted to say I am definitely not a cell phone user once in awhile and I use my right ear again seldom and my tumor was in my left ear so that theory for me I do not believe was the cause. Maybe one day they will determine why some people get these types of tumors and better ways of removing them or preventing it.

Best Wishes,

Pat

[dsharron]

An Update:
Operation # 6... (Total of 7) We decided to go with a craniotomy, where they took belly fat to patch the hole from the inside & sew the Dura mater.
It’s been 3 weeks today since surgery. Spent 11 days in ICU, a total of 2 weeks in hospital. They did a lumbar drain for 8 days. Everything looks to be successful and I'm feeling good.
Blessings
Derick

[Lizard]

Oh finally!  Yay for you, what a long road.  Cheers to no more leaks!
Thanks for the update, I was wondering what happened.
Liz

[Jim Scott]

Derick ~

I followed your posts (but had nothing useful to add to the thread) and I'm so pleased to learn that your CSF leak seems to have finally been vanquished.  I hope and will pray that it remains sealed.  Thanks for sharing this account of a difficult situation with a happy ending.

Jim

[CHD63]

Derick .....

Finally you seem to be on the road to recovery!  Thank goodness.

Let us know how you are doing.

Clarice