Re: New to this too

[kmancini]

I am new to this site.  Had AN removed 4-8-08.  Went back to hospital 2 weeks later for csf leak had lumbar drain for 5 days.  Went back for surgery behind ear to stop leak on 5-30.  I was fine for about a month.  July 4th weekend I got a leak out of my ear.  Went back for more surgery behind my ear and to block off my ear drum with stomach fat.  I was ok for 2 months and got another leak.  Oct. 6 went for surgery up my nose to stop leak.  No sucess.  Went in for surgery behind ear again to go in further to repair leak with fat and cement.  Had
BAHA also inserted at the same time.  Is there anyone else who had trouble with spinal leaks.  Still waiting to see if this sucessful this time.

Karen

[Kaybo]

Hi Karen and welcome!  Sounds like you have had your share of trouble with leaks!  Sorry!  I didn't have any leaks - about the only thing I didn't have so I can't really help you there.  Where are you located and where did you have surgery?  What procedure?

K

[msmaggie]

Hi  Karen,

You have come to the right place for encouragement and answers.   My best advice is to arm yourself with as much knowledge as you possibly can.  Doctors mean well, and can be very helpful, but the more you know about your circumstances, the better you are able to make good decisions.  The medical world can  be a confusing place to find yourself in!

Maggie

[leapyrtwins]

Karen -

boy, you've certainly had your share of interesting things going on post op.  I didn't have a CSF leak, but others here have.  I don't know if anyone's had more than one or two leaks though; I think that is somewhat unusual.

Did your doc give you any reason for the multiple leaks? 

Jan

[kmancini]

My doctor has been trying save my hearing this whole time and I have very porous bone.  But this last time he just went in and sealed off whatever he could.  I went to University in Cleveland Ohio.  They have been great through this whole ordeal.  I have been on very srtict restrictions.  We are just praying this last one took.

Karen

[sgerrard]

Hi Karen,

I moved your post to a new topic, because it is fun to move them around (also to help people find it).

Other members have been to Dr. Megarian in Cleveland, I think you are in good hands there. The CSF leak business doesn't sound like fun at all, I hope they have stopped it now. Who knew you could have porous bone in your ear?

Welcome to the forum. 

Steve

PS to Maggie: all I did was change the name Hayneshome to Karen in your post.

[Omaschwannoma]

Wow, you have been through a wringer so to speak and I'm very sorry you have to go through this! 

I am very glad you introduced yourself and I hope you find comfort here and answers to questions you have. 

[Jim Scott]

Hi, Karen:

Another welcome here and of course, the hope that your CSF leakage has been permanently ended.  Despite the frequent leaks (and porous bone) I trust your surgery was otherwise successful. 

Please post again and let us know your full story.  We care and, as AN patients and family members of AN patients, we can empathize, be it good or bad, because 'we've been there'.

Jim

[kmancini]

I have stumped the doctors.  He had a conference call with other doctors across the country to get other ideas.  I hope this one worked.  I get very nervous because my mouth is always salty tasting.  Spinal fluid is salty.  But I am not dripping yet.

Karen

[cherrypiper]

Holy Toledo Karen.........i sure hope surgeon and his team understand the word  lawyer   lol

I hope you get relief this time , but if not id suggest another surgical team all together somewhere else.

[Cheryl R]

The salty taste might just be something you have to live now since you have had so many surgeries.             I am NF2 and had AN surgery on one side and eventually a facial neuroma with more surgery on same side and then 2 weeks later the CSF leak.     The hospital has used a new type colloid to keep things in place and it didn't work well and 3 people got leaks.         They went back to their more expensive product.                   I did fine after my leak surgery.        They though did alot more fat and into the eustachian tube more and removed the ear drum and have muscle over it.    I have had no more problem.                I have the salty taste on the right all the time now and is maddening.             This was done 2 yrs ago.                      I can not see how your dr did yours and it did not work so many times.                   I don't understand how he could even do it and even try to save hearing.           Have you seen another surgeon?           
                                            Cheryl R   

[wendysig]

Karen,
You've certainly had your share of AN related problems -- I hope the last operation does the trick.  Let us know how things are going.

Wishing you good healing,
Wendy