Hi Everyone-
I have been discussing Nan's dizziness with her off line but wanted to share my story.  I am not so sure of the MdD diagnosis.  I was diagnosed with an AN in my left ear in 11/03 (1.0 x0.9 cm but growing out of the EAC towards my brain stem). I had it removed by Dr Fayad/Hitz at House Ear in Los Angeles, CA on 12/3/03 via Middle Fossa approach. I was in the hospital 6 days because I developed a CSF Leak on day 2 and required a spinal drain for 3 days.  No more clear fluid from my nose at that time.  I had the usual balance/dizziness/fatigue problems before and then more so post surgery.  I recovered and for several months I was doing quite well. I lost my hearing in the left ear but minimal facial problems. I had a BAHA hearing aide placed 4/04 which has considerably assisted in my recovery and my return to work.  My balance was functional, not perfect but very functional.  I returned to work 7/04 as a nurse case manager in a community hospital.  Then in January 2004 I started to feel progressive balance and dizziness problems resulting in my inability to function/work, I felt awful. I went on disability again 5/05.  I had vestibular testing that was negative except for some mild nystagamus.  My physician stated because I had a middle fossa approach and they tried to save my hearing (unsuccessfully) they did not cut the complete vestibular nerve (the vestibular nerve has an upper and a lower branch, the lower branch does not always respond to standard vestibular testing).  Because I was cotinuing to get worse my physician started me on gentamycin injections into the affected ear.  The first one lasted about 2 months and then the dizziness started again.  We tried 3 more gentamycin injections which were not as helpful.  After working with my neurotologist and my nerurosurgeion we decided to procede with a laybrynthectomy and vestibular nerve resection which was done 7/05. The belief was that I was growing a neroma on my vestibular nerve that was damaged during my original surgery and this  was giving off bad signals to my brain, causing my problems.  After surgery I was told that I had vestibular nerve fibers growing in my hearing nerve (quite unusual, they discussed my case at grand rounds, Dr Hitz/neurosurgeon states he had not seen this before and he as done thousands of ear surgeries, talk about one in a million). Therefore, they also resected my hearing nerve since I was already deaf in that ear.  I was significantly more dizzing with very poor balance post op with  nystagamus,  my physicians felt this was a good sign,  if the nerve was completely dead then cutting it should not have made my condition worse.  I went to vestibular rehab for 4 weeks and progressively improved.  I was able to return to work in September 1995 with minimal balance/dizziness problems.  A success!!!
However, in January 2006, I started leaking clear fluid from my nose, having headaches, nausea and dizziness again. This primarily happened only whenI was very active.  I had an MRI that was normal.  I then had a radionuceide cysternogram (this is a horrible test, they inject radioactive material into your spinal canal/CSF, then they shove cotton up your nose and into your eustacian tube, these cotton pieces are connected to strings that are taped to your face, cotton and strings are left there for 24hrs, very uncomfortable, I constantly felt like I was gagging, then on top of that I had to exercise after coming home because this was the only thing I knew would  cause the fluid to run out of my nose).  Anyway - an intermittant CSF leak was diagnosed and I returned to surgery on 5/1/06 one more time for a blind closure of my left EAC (this consisted of a tubal ligation of my eustasion tube, filled the area with fat, removed my ear drum and sealed my ear shut). I also had a spinal drain for 2 days after surgery. My head feels disconnected from my body again but improving everyday, headaches are gone, no nausea.  I have a doctors appointment today to remove the stitches in my ear and behind my ear.  I am concerned that this did not fix the leak completely because I still have salty fluid running down the back of my throat, but nothing out of my nose.  So I will see what my doctor says today. I am not able to lift, push, pull, bend over, strain, or anything else like that until further notice.
Howver, I must tell all of you - I still feel very blessed, my facial nerve is 90% intact, I have wonderful doctors that continue to work with me and resolve my issues and have never doubted what I was telling them.  I have a wonderful and understanding husband who loves me no matter what, a wonderful 16 year old daughter that is supportive and loving and an extended family that continue to support and pray for me.  I have a strong faith in God and that all of this has a purpose in my life.  I am a registered nurse and believe I will be able to return to the job I love. ÂÂ
Cheryl
PS - I love cruises and don't plan to give them up. In fact I went on a 7 day Mexican Riviera cruise before my most recent surgery. I took Bonine/Phenergan every 12 hours and felt wonderful. When I came home I returned to my same headaches/nausea/dizziness but no worse than before the cruise.
