Hello All -

Newbie here.... Glad to run across this site as my symptoms relates to this board. I am currently in the Virginia Area and in need of a Dr. who specializes in PLFs.

Starting Jan 2008, I was weight training (sit up w/ weights) and once done...when I stood up - BAM! The room was spinning, I got dry mouth, confused, totally off balance. I immediately went to the ER and was diagnosed with Dehydration and was told it should get better after drinking plenty of fluids. The spinning sensation stopped w/n a week, however, I still fight off the feeling of lightheadedness on daily basis after walking for only 15 minutes so I am very limited to types of festivities. In addition the constant struggle of brain fogginess, “woozy”, floating sensations, extreme fatigue when only doing simple things like grocery shopping, having difficult times in large crowds, around loud noise and esp echos and when there is a variety of ppl talking at once.

Since Jan 08, I have gone to every type of dr. you can name (20 and the list keeps growing) to find a Dx. Test were performed on my heart, brain & spine and all came out completely normal. Then finally in Nov. 2011, after a visit to a Dr. at wash. hop. center who has been mentioned on this board...He was the 1st to make sense of why I was having these symptoms. He Dx. me with perlymph fistula (PLF), esp. since all other vital organs and health history is NORMAL. However, I wasn't too comfy with his Dx. because his face expressions shows that he was getting irritable and annoyed when asking him questions of concern about the surgery.

Perhaps with his 1000s of patients that he stated he have performed on, he hears patients complaining about the same symptoms over and over again and so he has become a little desensitized and therefore not as compassionate or maybe just a little burnout. Whatever, the case may be, I decided to go for a second opinion.

Second opinion was given at John Hopkins where I was told that this is the best hospital to go to as they specialize in the area of inner ear disorders.
John. Hop. Dr. gave me a totally opposite Dx. He believes I have "Migraines" (MAV) because based on my health history reports that I provided...and my MRI (brain & inner ear canal) & CAT Scan (inner ear) films and medical notes they all state - "NORMAL" and my overall health records (LABWORK) is NORMAL. In addition, to my age of 36. He didn't see how any of my symptoms relate to a PLF. He also mentioned that he didn't see a PLF in my film charts (CAT SCAN inner ear). So makes no sense to him that surgery was recommended. Then provided me some brochures on "migraines" and went into explaining his Dx.

So now I am totally confused and totally down because I'm back where I started.

I did mention that I don't understand how Migraines have anything to do with me fighting off the feeling of lightheadedness on daily basis after walking for only 15 minutes. In addition the constant struggle of brain fogginess, “woozy”, floating sensations, unbalanced, extreme fatigue when only doing simple things like grocery shopping, and having difficult times in large crowds, around loud noise. And before all of this I was perfectly fine.

After my spill, he just mentioned that Migraines occurs at anytime. So I just listened and took the brochures and left. I felt it was no need to try and keep prolonging his opinion.

Well at this point, I am not sure what to do but keep trying. So I plan to go for a 3rd opinion at Georgetown hosp.

Does anyone know of any Dr. who specialize in PLFs in the VA/DC/MD area?

And for those who have had the PLF surgery......did your dr. see the inner ear tear prior to surgery?

I hope all is well for everyone....and really appreciate your help!

Claudia