DR said PLF or SCD or VM

I went to the specialist in Portland on Tuesday. He was so nice and very knowledgable and confident. He reassured me that all my symptoms were normal and that almost all his patients have some degree of the same symptoms… Even going to Church making them more dizzy. He explained everything in detail. He said right now he’s thinking of 3 possible diagnoses. 1) PLF 2) SCD 3) VM. He wanted me to have a special high resolution CT there but since my health insurance is through the hospital I work at Im not allowed to have imaging studies done anywhere else. He said he would take my previous CT images and have them turned into 3D diagrams…something like that to look for a SCD.

He had me see his Neuro-psychologist for a evaluation. The testing was so hard!! Its a little depressing so see how severe my cognitive dysfunction is :confused: I kept telling the Neuro-pyschologist that I used to be really smart. I swear! I couldnt even put togethor 2 puzzles or repeat back a word list… I also did a Posturagraphy test while they applied pressure to my ears… horrible I had to throw up afterwards…

Im going back on next Thursday to finish my testing and then talk with him about the diagnosis… Finally after 7 months a real diagnosis!!

Oh wow- sounds like you had a good visit! So great to find a good dr.! So hopefully on Thursday he will give you an answer? Did he do a fistula test on you- if so, was it positive or negative? Let us know what happens please!

I think thats what they were doing with the Posturagraphy test with ear pressure… I dont know the results but the audiologist had to catch me a few times eventhough I was in a harness so thats not good… but I already knew I have zero balance… She did recommend me getting a walking stick…

Im hoping! I wish I would have recorded my visit because I have a hard time remembering what he said… damn cognitive problems!

I asked him about PLF’s being so controversial and he gave me a long detailed reason why they became so controversial… He said they are rare but their are people walking around right now being undiagnosed and suffering for no reason. I dont think he’s 100% sure that is my problem… He did say we could try some medical managament right now like a new migraine preventative medication but I decided to wait till after the testing since I had worst symptoms with Flunarazine, Propanolol and Amitriptyline and little success with vestibular suppressants.

I will! :slight_smile:

That’s funny I never had the posturagraphy thing at any of the drs. I went to. For me the fistula test was just me sitting in a chair and they put this turkey baster looking thing in my ear and blow a puff of air in and see if my eyes move/if i get dizzy. It is really inaccurate from what I have read- not even sure why they do it.

So were you just standing with a harness on and then they blow a puff of air in your ear and see if you sway? Did it make you really dizzy too?

As far as what your dr. said- he is absolutely right about people walknig around with fistulas and never being treated- there is so much misinformation out there and every dr. has a different idea of what the symptoms are. For example, the 2nd opinion otologist that I saw believes firmly that in order to have ANY type of inner ear damage (including a fistula) that you have to have hearing loss. This is completely false and for someone like me (without hearing loss), I end up being untreated because this guy is misinformed. It is a crime to make someone suffer when there is treatment available. I fortunately got to see a 3rd neurotologist who I think is the most skilled and he didn’t think I had one. To be honest i think i did have one but it healed because i cant provoke the dizziness by plugging my ear like i could initially. My point is, there aren’t many otologists in this country, and not many people would have the luxury of seeing one, let alone getting multiple opinions. It is criminal to not treat someone with a fistula- but these drs. are misinformed- some don’t even believe that they exist.

I am the same way at those appointments- I am so nervous and overwhelmed that I forget what the dr. said and forget to ask my questions- it is very stressful. Well it sounds like you had a good visit and let me know what happens!

By the way I still think that is amazing that you randomly met that guy in your hospital who had a fistula repair- what are the odds of that happening- a zillion to one. Did he say anything about what the surgery was like? Did you say that he is almost 100% better, even 2 years later, or what did he say?

I also never had a cognitive evaluation- that was never mentioned at any of my drs’ offices. Interesting, but I have read that that can be common with vestibular disorders.

I was harnessed in the moving platform, I had this thing on my head, they put these “prongs” deep in my ears then they had me close my eyes while the platform moved while applying pressure to each ear individually. It made me so sick.

I think the eval is more for his research because he told me I wont be charged for it. They will redo the testing in a few months after Ive had treatment for whatever my diagnosis is.

Yes, its very sad that some drs wont even consider this a probable diagnosi. Your right there are not enough skilled Neurotologists out there. Lately, Ive really noticed how many people we admit every week at my work for vertigo/dizzy… I feel so sad knowing how hard they will have it getting a proper diagnosis. …since vestibular neuritis seems to be the initial diagnosis for all vestibular symptoms.

What kind of job do you do at your hospital? I know, for the average person with vertigo, if they have no knowledge or access to a computer, they are going to have a tough time…that moving platform thing sounds awful!!! I think I saw pics of it online before just thinking about that makes me nauseous!

Im a Unit Coordinator for the inpatient Oncology department. I told the doctor how I have to take Zofran every day at work but I usually throw up during my shift. On the right of my desk if the phone for the whole department, my computer in front of me and to my left is the patient call light system which DINGS non-stop. He said its mostly sound induced veritgo/naseau same as Church.

Before this I had never heard of any of these terms PLF, VM, Vestibular system… I had no knowledge of the inner ear. I see all the people being referred to ENT’s and I think to myself… they are not gonna be able to help you. While I know there are some really great ENT’s out there, they dont focus enough on the Vestibular system. I know a couple of ENT’s at my work that wont even treat dizzy patients… to much work I guess.

Im so leery now of any of these tests… the doctor wasnt even very interested in my previous VNG because he said most of the time their not done correctly and if they are their not very reliable. I spent so much money on that testing and ended up in the ER after it. And all the other doctors were going off the caloric results from it… So frustrating!!! The only reason Im even doing testing with this doctor is he has a state of art testing lab and I trust him. I refuse to do another caloric… who invented something so awful?

I am presuming VM is vestibular migraine, but what do the PLF and SCD stand for? The testing you went through sounds horrendous and after 15 years at this, never heard of the moving platform one, only the rotating chair. Angela

I’m sorry to hear how difficult work is- is it possible to take sick leave/disability? Is there any way they can transfer you to a quieter desk job? I hear you about the ENTs- most general ENTs know almost nothing about vertigo- the best they can do is to point you toward the nearest neurotologist.

That’s terrible you got sick after testing- I forget is the VNG the rotating chair in the dark? Did you have to go because you couldn’t stop throwing up? For me the caloric wasn’t too bad but the rotating chair in the dark should be a torture device used on prisoners LOL- awful- but the platform thing would be the absolute worst. Different drs. have different ideas about how reliable the testing is, which is frustrating too.

I hope things get sorted soon and let me know what happens!!!

Angela- PLF:Perilymph Fistula SCD:Superior canal dehiscence The doctor said the symptoms for these 3 often overlapp each other. That just makes more confused :confused: Of course then he said its possible to have more than 1 of these conditions at a time… go figure. Nothing Vestibular can just be easy.

Sarah- I havent had the rotational chair yet… that thing looks like it belongs in a horror movie!! I hope its not part of the 6 tests Im doing next week but… their testing lab has one so I guess there’s a 50/50 chance… If its worse than the calorics (water in your ears) then I dont know if I can handle it… I think that chair would be worse than the moving platform cus its just so scary looking.

Do you have chronic naseau? I cant go without Zofran everyday… I barely eat anymore either because of the naseau. Even just conversating with people makes me want to throw up. Also, Ive noticed Im so easily frustrated and irritated/short tempered… thats not the usual me… I think because of the cognitive dysfunction… Do you feel a personality change as well?

When my stuff first happened, during the third episode (I think I explained this in my other email but it is confusing), I had constant low grade nausea for months. Now that I know more about what actually was happening, I am positive that I prolonged that for way longer than it would have gone because I took xanax every night- I think that slowed what compensation I could have had. The nausea did eventually go away even with the xanax though. Mine was mild enough that I never threw up, not even when my accident first happened. I actually found that eating little bits throughout the day was the best thing for me- I don’t know what zofran is- but there is nothing really great at least over the counter to take for that.

As far as a personality change- are you saying this because cognitively you are having trouble thinking? For me I never had trouble thinking but I did change because I felt so shitty like I was on another planet- so I was (and constantly am) very stressed out, upset, tearful, etc. When this accident happened I stopped going out socially for the most part because I just felt so awful- but I did go to some things. My situation is more complicated though because I also have chronic pain which unfortunately got worse around the beginning too so that was another reason I withdrew a lot.

I was actually really fortunate that this happened while I was in grad school, so I only had a few hours a week that I had to be some where and did the rest of my work at home. I can’t imagine what would have happened if I was working at the time…I don’t know how you do it honestly. The only thing though is it is good to keep busy- sitting at home and being consumed with the dizziness definitely doesn’t help things.

Don’t worry about the rotating chair- I didn’t want to scare you- honestly I don’t remember it lasting that long- the most annoying part is that they ask you to do mental tasks while you are spinning- like how can I come up with words that start with A when I am literally spinning- I totally sucked at those tasks LOL!!!

Zofran is an antiemetic… ususally used for Chemo patients. It doesnt make you drowsy at all and it really clears up my naseua…although it did nothing for me when I was pregnant.

I think its a mix of all it… I used to be such an active person. I worked full time, was in school, did volunteer work, involved in Church and activities with my kids… Now I only get out of bed to go to work. Like you, I suffer from chronic pain too… I used to be able to use pain mediciation as needed now cant do anything for the pain except rub tiger balm all over my arm. I used to say this chronic pain is ruining my life but at least I got “breaks” with the pain with this vestibular crap there is no “break”…

Can you at least take something like Motrin or Aleve for the pain? I know, I would rather be in pain than dizzy/unsteady on my feet any day. I have had a similar problem since this all began because I had just been starting to trial pain meds when the dizziness hit. Most meds make my symptoms worse- However I did find the lyrica helped my vertigo somewhat- unfortunately it is really sedating but also doesnt seem to do anything for my pain??? Gabapentin was great for pain but totally screwed up my balance- it was also super sedating. I think once you get a more firm diagnosis with the dizziness and a treatment plan going it will be easier to get on a pain med.

Also have you tried topical capsaicin for pain on your arm? I have used it before and found it works really well on certain areas (i had pain in my big toe and it was great for that). Worth a try you can get it at drug stores.

I’ve also tried Lyrica, gave me horrible headaches and zero pain relief just like you. They think I have nerve damage but Im doubtfull.I was on Neurontin 600mg at night when all this started… It didnt help my pain but it helped me sleep through the night since the pain constantly woke me up. I had the same issue as you when I started Neurontin… thats the first time in my life I’ve been dizzy but since I was only taking it at night it wasnt an issue… but if I take it now…I’d be walking into walls, I tried it a month ago not good. Someone else suggested I try Capsaicin cream too… maybe I will. Tiger balm leaves yellow stains on my sheets since I slather it on my arm at night and it stinks lol.

The capsacin worked really well for me- the only thing is at first it will burn like hell…it takes time for that to go away- even after time sometimes it will randomly start burning for me- just have to work through that part.

Hi. I’ve had all those tests you listed and I think the caloric is the worst! I hate that test!! Hopefully in the future I’ll only need yearly hearing and VEMPs plus the occasional CT scan. (I have bilateral SCD and MAV. I had a doctor tell me I had bilateral PLFs but I don’t think there’s much to be done for that if a person even has a fistula. I had surgery on each ear for the SCD & PLFs and am just speaking from my experiences.)

I hope that you will get a more clear-cut diagnosis soon.
My best,

I have the exact same thing going on my doctor thinks its either of the three. My vemp came out just above the ybreshold and i have thinning of right canal. He also brought up thought of fistula. He says he will call me in two weeks i sure hope so bc its been a mo.th since i have seen him