Looking for ear specialist - Perilymph Fistula

[imnotcrazy]

@Claudiaj - I didn't know CAT/MRI (or any other diagnostic test) could rule out a PLF...? Based on what I've found, it's almost a diagnosis of excluding everything else, and then identifying a bizarre cluster of bizarre symptoms, which may include headaches/migraines.

You mentioned crowds; that was a big one for me. With a "sea of people" it was hard for me to get a fixed visual reference, and very disorienting. Understanding people talking in a crowd is still a problem, for me.

Definitely get a 2nd (or 3rd, or more) expert opinion before having ear surgery.

[Mark in Idaho]

imnotcrazy and others,

Check out the "Scared to have conversations" thread. It discusses these issues of being in a crowd and the audio struggles.

[pcslife]

Claudia,

I live in DMV area.

As imnotcrazy pointed out CT Scan/MRI and all others are pretty much useless and is all based on symptoms. Unfortunately our symptoms can mimic lots of other conditions too.

I have most of the symptoms you all mentioned. My Neurologist (nice guy with holistic approach and not a drug pusher) told me to go for a walk. As you mentioned all that makes me more light-headed. Crowds are a big no-no to me too. I am even trying the BOSE best noise cancelling phone (since ear plugs didn't work and made me more imbalanced) and didn't work that much.

For certain frequencies it helps. So I have to wear and take it out constantly based on the environment. So it is a mess.

If you check out dizziness-and-balance.com they don't highly recommend surgery. My co-worker had true vertigo and had surgery (from dizzydoc at Washington Hospital Center) and good only for 1 year and lost feeling one side of tongue. But she didn't have any terrible symptoms like us. I am willing to lose feeling on one side if only it can cure me.

Even she told me that doc is not a nice doc and rude. I don't know what he expects - just to give our head so he can open it up and patch the ear based on assumptions?

I saw this other doctor (George Town hospital - Jeffrey Kim supposed to be good too) and he did all tests etc., and said I have anxiety. His conclusion is purely based on tests which we know the deal. But He didn't even do any test for tullio's phenomenon.

Get few more opinions but not that many even in a big city. It is a very tough decision to go for a surgery.

I went to a spine and pain doc and now wearing a cervical collar. It does help which is bizarre. So now the problem looks like in neck or ear. Went to many chiros (including upper cervical) and no help. Have you tried any collar? How about any medications like Xanax? I even wear them at night which reduces my headache and dizziness in morning. Now with that I can drive more comfortable. Now I am going after neck before messing up my ear.

If anyone gets any success for this debilitating dizziness, pain etc., please keep posted. I do the same.

Cheers!

[imnotcrazy]

So, I'm still looking for doc. I went to the Dr in Christchurch. Pleasant guy, but he just seemed like he was busy with other stuff and didn't really give a crap about me.

His assessment is that I didn't have PLF, but he can't point me towards anything else, and the more I learn about PLF, the more certain I am that that's what was going on - and the more confident I am paying for a proper assessment.

Looks like I might have to spend some $$$ travelling overseas... If anyone can suggest a PLF doc in US, AU or UK, those would be the places that are easiest and/or most desirable to travel to, and also those doctors' opinions should be considered credible in NZ. I'm also interested in doctors in other countries, in case I have to make a "B list".

Thanks...!

[pcslife]

I know someone who the PF surgery with the following doc. I think I mentioned before.

http://www.dizzydoc.com/

He is a rude doctor and not very compassionate from what I heard. I have been contemplating about the surgery since it is exploratory and there are is no definitive test to diagnose and confirm

But good luck and keep posted.

Cheers!

[Dizzygirl]

Hi everyone, I am new to this forum, so please forgive me if I am not posting correctly-never posted online before! I have been reading these boards and others for quite some time and felt compelled to share my experience, as I have just undergone a PLF repair this past Tuesday by the surgeon mentioned in the previous post. The decision to undergo repair was based on my 2 year history of baffling symptoms (fatigue, minor imbalance 24/7, cognitive issues-it took a while to figure out my issues were inner ear related since I had no hearing loss or spinning vertigo) and a battery of hearing/balance tests performed which showed endolymph hydrops in my left ear (yet no vertigo, so it was definitely not classic Meniere's) and a mildly positive platform pressure test. I can't pinpoint when this all started but i did have a minor whiplash injury due to a fall around that time. I had tried diuretics and a reduced salt diet, which did help some, and tried calcium channel blockers, which gave me side effects. I also had an MRI and bloodwork to rule out other issues. I understood going in that this may not be a cure, and was the next logical step in the elimination process.

The surgery went well from a technical standpoint, and although there was no evidence of a leak, this is apparently not unusual at all-they just patch anyway. I spent 1 night in the hospital. I have had surprisingly little pain, and have only taken Motrin once. I cannot hear out of my operated ear, and this was expected until the swelling subsides. I had been hopeful that my balance issue would be immediately resolved, but this has unfortunately not been the case-my balance has worsened since the surgery. Aside from the usual swelling causing issues, the surgeon thinks that i may be in the minority of people who may have an increase in the hydrops pressure due to sealing off the supposed leak. I am increasing the dose of my diuretic and adding Valium for the next couple of weeks, until hopefully the extra fluid is reabsorbed-if it isn't, there is apparently an additional surgery that can be done to help remove the extra fluid. I am in wait and see mode and keeping my fingers crossed! I have had only very minor facial and tongue numbness, which is hardly noticeable and already going away.

Hope this has been helpful-if anyone has any questions, please feel free to email me (I think you can do that on this forum, right?). I will do my best to share my experience-I don't wish this kind of balance condition on my worst enemy, and know how frustrating it can be and how it can rob you of your former life. I also know how daunting it can be to try to get a diagnosis and to be faced with making a decision regarding surgery that may or may not help.

Wishing everyone the best in their journey back to normalcy!!

[pcslife]

Dizzygirl, So you took the plunge and did the surgery with dizzydoc in Washington D.C. So you must be really struggling with dizziness like some of us here. I completely understand. That is little disappointing your balance issues got bad. May be it takes time or another surgery fix it?

This dizziness pretty much crippled my all activities. Being some sort of dizziness 24/7 can do that to you. For me all my tests are negative. My balance get affected and heart start racing only in certain environments. So no one knows it is coming from eyes, ear, neck or brain or altogether. I had bleeding on the brain so all this makes things much more complex in my case.

Right now I manage with Xanax. Diuretics made me more dizzy. I am taking a calcium channel blocker (Verapamil- low dosage) and really not sure it helping. But works for my stomach and keep my BP in control. Ear plugs supposed to help but in my case it makes my balance worse. It is extremely daunting to make that decision to go for surgery. You cannot blame the doctors too because there is no other way they can find out.

Thanks for posting and please keep updated how it goes if you don't mind.

I sincerely hope you recover from this terrible condition.

Cheers!

[Claudiaj]

Happy New Year Everyone! Claudiaj here.

Well I am still hanging in there. As a matter of fact, Jan 26th will be 5 yrs. as I continue to search for a Dr. that I feel comfortable with.

Dizzygirl - thanks for posting. I really wish you the best as you recover. As I really wasn't happy with that Dr. and his mannerism. I understand that the surgery may or may not work. But I really got a bad vibe from him that if it didn't work, his patience would only go for so long. Or it could be me and the anxiety that kicks in when I just think about the unknown results for ear surgery. That's a very brave step you have taken and please keep posting esp. if you ever feel down. Recovery is a hard process and it's nothing like support from people who really understands your symptoms.

I have been to (2) other Drs. which neither of them agree w/ the dr. diagnose at Wash., hosp. center. So now I am totally confused. One was at John Hopkins...who diagnosed me with MAV and sent me home w/ brochures. I was so disgusted when I left. I really didn't agree with his diagnose especially since he couldn't answer some of my basic questions. In addition, I received a letter a month later saying that he was moving on to California. I think that was confirmation that he wasn't really interested in my situation. Now I am working with the dr. mentioned at Georgetown Hosp., who can't give a diagnose due to the unknown. However, recommended that I continue to go through physical therapy treatments. So really not sure w/ him either.

So in the meantime, I still have hope that I will find the right dr. Has anyone heard of Metropolitan Neuro Ear Group???

I can say my days are better when I maintain an adequate level of vitamins and Minerals in my body especially Iron, Zinc, Magnesium, Vitamin D and the list goes on. It's even to the point if I go one day w/o taking any vitamins. My body is totally OFF. Not sure why or how my body detects so quickly or behaves so inadequately when there is a deficiency, but I can say its a huge difference between the two. So I recommend getting a blood test to check for adequacy for all vitamin and mineral levels. Also, I have totally eliminated all meats from my diet. As each time I would consume meat, especially beef..I would get so nausea. And seafood seems to contain large amounts of sodium.

So my symptoms are worse if either of the following happens even w/ adequate vitamin/minerals levels......I wake up in the mornings, don't eat on a reg. schedule like every 2-3 hrs, drink less than 33 ounces of water a day, if I have an upset stomach, in very warm environments and if I tend to do small activity 1st thing in the morning (like cooking, cleaning or walking more than 10 min) and when mother nature takes her course. My symptoms are very light-headed, nausea, unstable when standing or walking and a cloggy left ear. Other than that, if the things mentioned above does not occur by the mid-day, I am more functionally just not 100%. At least now, I can go to the movies and not as scared to leave my home and be around family and friends.

Well, I will keep posting as I continue this journey and I pray for all of us to have a life back to normalcy.

Claudiaj

[imnotcrazy]

apparently i'm now looking for an "otoneurologist" or "neurotologist".

apparently they can fill in the blanks between head-injury and ear-injury that are missed by otolaryngologists and neurologists.

any recommendations in. new zealand, or nearby countries?

thanks...

[Claudiaj]

Hello Everyone! Still hanging in there. Has anyone ever heard of a Compression Loop Syndrome or sometimes called neurovascular decompression" or "microvascular decompression" of cranial nerve VIII??? Based on a YouTube video that I happened to come across when searching for lightheadedness/dizziness, Vascular Compression Syndrome is when an artery is laying on the Vestibular Nerve(within the ear). The symptoms of it causes vertigo, dizziness etc.) The test to confirm it is called a "MRA/MRI" testing on the 7th/8th cranial nerve...the video explains further for more specifics of testing. But she says that the test is easy which will help to confirm if that's what's causing balance symptoms. Anyways, just thought this was interesting and worth looking into esp. when all tests comes out to be NORMAL. Hope everything is going well with everyone. ClaudiaJ