CSF leak at skull hole - anyone ever have this?

[suboo73]

Hi CarolAnn,

I wanted to say WELCOME to the Forum!
Sorry you are having such a time with the leak - prayers all around that the surgery on the 29th will take care of things.
Sounds like you have some great advice from those with experience.  I am still in W & W, so i am glad others have chimed in to assist you.
--------------------------------

I live in Virginia and we have had a record snow - it has surpassed the all-time record at Regan National in downtown DC.
This will be a year for you to remember, also!
But HOPEFULLY this time NEXT year it will be a faded memory and you will have moved on with your life.

My thoughts and prayers are with you.

Sincerely,

Sue

[CarolAnn]

Hello Sue,
   My W & W period really was not long.  But that was because I went undiagnosed for a long time.  Just took me being sent to a neurologist (finally) to figure out what was happening to me.   From my first symptom - to diagnosis - was a year though.     After the neurologist told me it was a tumor and to go to see Dr. Piepmeier and Dr. Kveton at Yale New Haven Hospital, it was around 2 months for me to be in surgery.   Not that it was huge, 3cm - but it was basketweaving itself around my face nerve, hearing nerve and balance nerve. The doctor said it's origin was the balance nerve and he cut the full base of it out and left 10% of the tumor in - on the facial nerve - 

Before the surgery my symptoms were: 
Tinnitus.    Exaggerated hearing. Not going deaf, things were too loud.   The tumor was pushing open the hearing something?? canal.     My face was numb on the right side under the eye down to the chin.  Just like a dentist had put novicane there.    My right eye had a constant pushing pressure.  I had double vision.    I had a twitch in my right eye.  Balance and perception were off.  Reach for a handle on a door and miss it.    Right hand was shaky, but the doctor was not sure what that was or if it was connected. (but it did stop after the surgery....)

Results were that I kept my facial feeling and function.    Lost my hearing in the right ear.  Trouble with balance.  Still have tinnitus.  Still have double vision, but hoping when the swelling is gone and the fluid is down to normal, this will resolve.

Good luck with your W&W!  I think that is a tough period. For me, I just needed to know what was wrong and make a decision. Once you make the decision, you are more in control, or at least have the illusion you are more in control   

Best wishes!

Carol

[Cheryl R]

More tumors would show up in time if would have NF2.     I had my first AN in 2001 and the one on the other side showed up 2 yrs later when I was 51.      2006 was the facial neuroma with surgery and nerve graft from by the ear on the same side as the first AN.   Was not a regrowth.       I had the CSF leak from the nose 2 weeks later and more surgery to fix.     They had used a new colloidal implant to hold things inplace and 3 people got leaks so back to the old type of one.           I started going deaf on the other side as that one growing and had surgery in 2008 thinking would need a cochlear implant but the hearing improved so very fortunate.                  I was back to work in 2 months after the first ones but retired when close to deaf and have just stayed retired.    I have some balance issues I have to watch under certain conditions and winter is one!                 We have had rain and some icy stuff but the big snow is later today.  I am on the area in central Iowa where it might be 5-10" or else 10-15".             Plus we had lots of snow 2 weeks ago.              Capt Debs snow looked much prettier than ours!     
                             Merry Christmas to all!                         Cheryl R

[pjb]

My prayers are with you and so sorry you have to go through this thank goodness I did not have a CSF but I am having a lot of pain at the surgery site and it is wait and see they said I might have to have the titanium plate removed and it will be overnight stay and they will not be putting anything back in it's place I did not question as to why because I was in pain and just dumbfounded and worried to have to go anywhere near a hospital again....

I am sure everything will go well on the 29th and I would question them as to the difference between having a mesh or putting in a plate?

Regards,

Pat

[CarolAnn]

Cheryl R,
  I am 49 (will be 50 in Feb).  Fingers crossed it is not NF2 for me, but what is...is.  God will not give us more than we can handle.  You must be strong to have been a nurse anyway! 
  Balance issues in snow.  Yikes!  True.  Hard enough on level ground!
I'm in Central Connecticut.  We are in a cold period, but the weather should hold until Saturday when we are either going to get rain, ice or snow.  Our weather teams here are not sure yet.  We are probably going to get the remains of your storm?  Have to check.  Iowa to Connecticut.  Sure, why not?    :~)

Pat,   He did call mine a titanium mesh.  If yours is a plate, how did they sew it to your meninges?   Unless your plate is on the skull and screwed down?  Good question there. Wonder why some doctors chose one way and others another way?   My incision was almost 6" long.  Maybe 5" - it did curve and was hard to measure and my husband was afraid to touch it to measure it.    He said my titanium mesh is sewn into my meninges.  Then they put a cement type plug over the hole.  Some sutures somewhere???   Then closed it up by putting the scalp back and sewing it up. The outside sutures were removed 12 days after.   

Since we are such a rare group of people, I am glad to have met all of you.  I can't imagine going through this without all the access to the internet that we have today.

Merry Christmas to all!  And to any of other faiths, Happy Holidays!!!   OR agnostic, have a good day?  :~)  So hard to politically correct, isn't it?

Carol

[pjb]

Cheryl R,
  I am 49 (will be 50 in Feb).  Fingers crossed it is not NF2 for me, but what is...is.  God will not give us more than we can handle.  You must be strong to have been a nurse anyway! 
  Balance issues in snow.  Yikes!  True.  Hard enough on level ground!
I'm in Central Connecticut.  We are in a cold period, but the weather should hold until Saturday when we are either going to get rain, ice or snow.  Our weather teams here are not sure yet.  We are probably going to get the remains of your storm?  Have to check.  Iowa to Connecticut.  Sure, why not?    :~)

Pat,   He did call mine a titanium mesh.  If yours is a plate, how did they sew it to your meninges?   Unless your plate is on the skull and screwed down?  Good question there. Wonder why some doctors chose one way and others another way?   My incision was almost 6" long.  Maybe 5" - it did curve and was hard to measure and my husband was afraid to touch it to measure it.    He said my titanium mesh is sewn into my meninges.  Then they put a cement type plug over the hole.  Some sutures somewhere???   Then closed it up by putting the scalp back and sewing it up. The outside sutures were removed 12 days after.   

That is my problem I just take things as they are and do not question anything they said a plate was put in and that was it but then again I went back to have the sutures removed and a couple of times after and just saw his nurse I guess I was taken back that the Neurosurgeon did not see me and it was the nurse every visit and she said about the plate possibly being removed. My incision is an S shape about 6 inches starting from the lower part of the ear upwards and is very sore and also a very wide indentation I personally feel too wide but I just take things as is which I have to learn to grow up and ask ask ask. I am hoping all goes well for you my prayers will be with you.

Since we are such a rare group of people, I am glad to have met all of you.  I can't imagine going through this without all the access to the internet that we have today.

Merry Christmas to all!  And to any of other faiths, Happy Holidays!!!   OR agnostic, have a good day?  :~)  So hard to politically correct, isn't it?

Carol

[CarolAnn]

Hi Pat!
"That is my problem I just take things as they are and do not question anything they said a plate was put in and that was it but then again I went back to have the sutures removed and a couple of times after and just saw his nurse I guess I was taken back that the Neurosurgeon did not see me and it was the nurse every visit and she said about the plate possibly being removed. My incision is an S shape about 6 inches starting from the lower part of the ear upwards and is very sore and also a very wide indentation I personally feel too wide but I just take things as is which I have to learn to grow up and ask ask ask. I am hoping all goes well for you my prayers will be with you."

My husband said I go into the doctor and act like nothing is wrong and they cannot tell how much my head hurts because I smile and act like I am okay.  That is me trying not to sound whiny.    One of the visits the nurse was the one that came in, and my head was swelling from the spinal fluid and I was not supporsed to go back for 2 weeks.  I just smiled and said, "okay."  We got home and my husband said I should have insisted on a sooner date.  The doctor was in an emergency surgery, so, I should have gotten the next available date.    I asked him why HE didn't speak up either.   Anyway - I did call back and told her my head really hurts and I want to come back.

We are trained to not question authority.  We must do it though.   For our own health and safety!   I tell my kids if they are being flagged over by a police car and it does not look right, do not stop, instead put your flashers on, drive slowly - and drive straight to a police station.  IF it is a real policeman, they will know what you are doing. IF it is a fake one and someone trying to hurt them, they will go away.
WE have to learn to behave like this. Something seems wrong, take your own actions.   Save ourselves.

Getting nervous about the surgery. I always throw up after surgery from the anesthia.   

Thank you for the good wishes!

Merry Christmas!
Carol