Vertigo just wont stop!

[ColaBurns]

Hi everyone, been a while since I've been on. Today was my 3rd MRI. I was diagnosed with a 4mm right side AN exactly one year ago and was put on watch and wait with bi annual MRI's. The vertigo has seriously gotten to the point that I'm afraid of driving anymore. I'm a 29 year old mother of 2 and I'm all for the watching and waiting but do I really want to take the chance of this thing getting huge out of nowhere and then kicking my self in the butt for not having it removed when it was still tiny? Is there anyone out there who has a small AN and it NEVER grew? Not even a mm? I'm looking for those "odd cases" where they just have a tiny tumor in their head and their brain gets to use all the craziness. Besides the vertigo I've also had more tinnitis in the LEFT ear and sometimes a feeling of "water" or something like that in the same ear. The tumor is on the right side but yet I have issues with my left? Does this sound right? Thanks in advance.

[nftwoed]

Hi;
  Just my personal feelings about watch and wait in a young person as yourself... What is the logical outcome? I think eventually there will be hearing involvement also and extracting the tumor from fibers of the auditory nerve will make the loss even greater. You've a long way to go with this at 29 and at some point, growth is likely!
  Re; Vertigo, if it is a true spinning, that's a little less common for AN, as dizziness is more common.
  Remember you can lose all the hearing in a few minutes with no intervention. Yes, a small 4 mm. AN has potential to do that.
  Tinnitus is a sign of hearing loss ( even if minor ) and you report problems in the contralateral ear to the known AN. Is it possible whomever is interpreting the MRI is missing the fact you may have NF-2 ( bi-lateral ANs )? The water feeling means feelings of 'aural fullness'.
  If you can, I would access the hospital or imaging center's radiologist's, written report of the last MRI and glean what you can from it.
  Due to it's rarity, the ear Dr. may be pronouncing an enhancement in the left ear as, "Not clinically significant".
  It happened to me at one of the best hospitals. I was misdiagnosed for 6 years even though I had attacks of incapacitating vertigo.
  Just a patients opinion, but I wouldn't wait for this to get worse. It certainly won't go away.
  Best wishes, ColaBurns, for your best outcome!

[ColaBurns]

Thank you. I'm supposed to be getting a call with my results tomorrow. Im not real sure what I'm feeling but its like when you're buzzed, not full out drunk, but buzzed. I have a hard time driving because the movement of everything passing me makes it worst. Does this make sense or am I just completely losing it? Nobody else in my family has ever had a brain tumor so I'm not sure how I would have NF2 but it is definitly something I'm keeping an eye out for. Hopefully tomorrows results will give me a better understanding of what I'm dealing with. I was thinking of checking out Barrow Institute in Phoenix to get their opinion as well. Thanks so much for the reply!

Cola

[TJ]

I agree with the other post, it is very unlikely that the AN will not grow.  When mine was found it was 5mm, it took 3 years to grow to 1cm and that is when I have Cyberknife radiation.  As for your vertigo, you may want to check with the doctor as you may have Meniere's Disease.  They found out that in my case I have it on the other ear, and it can be somewhat controlled by making sure there is no fluid build up.  I had to change by diet, and take a supplement but for the most part it seems to be working.

TJ

[jbbrown15]

Im not real sure what I'm feeling but its like when you're buzzed, not full out drunk, but buzzed. I have a hard time driving because the movement of everything passing me makes it worst. Does this make sense or am I just completely losing it?

No, you're not losing it, or both of us are!  In fact, you're description is really helpful to me.  I've had such a difficult time describing what I feel. 

[ppearl214]

There is a term that has been used around here for a number of years, coined by our very own, very dear Capt Deb (which she should copywrite as our drs now understand the term as well)... we call it "wonky head".  It's that somewhat vertigo spin with a head disconnect feel (much like being on cold meds).  If you do a "search" on it from the forum home pages.... you will see it used many times as many of us here (myself included) experience it.

Hang in there......
Phyl

Im not real sure what I'm feeling but its like when you're buzzed, not full out drunk, but buzzed. I have a hard time driving because the movement of everything passing me makes it worst. Does this make sense or am I just completely losing it?

No, you're not losing it, or both of us are!  In fact, you're description is really helpful to me.  I've had such a difficult time describing what I feel.

[Tumbleweed]

Cola, you've already received some excellent advice, so I'll just add a couple things that expound upon and shade what others have said:
1. Meniere's Disease presents, in part, as low-frequency (bass tones) hearing loss. If you're losing hearing in the high frequencies only, you can rule out Meniere's Disease. Definitely have a qualified doctor, or doctors, check for NF2; the symptoms in your left ear are consistent with those for an AN, but idiopathic neuro-sensory hearing loss (without known cause) can also cause these symptoms.

2. While it's true that your tumor is likely to grow over the many years you likely have left (barring a car accident or some other horrible mishap), it is possible it won't grow. The famed Dr. Derald E. Brackmann of House Ear Institute once told me he has seen some ANs that didn't grow for 20 years. I would suggest waiting until either you see an increase in size in followup MRIs or your symptoms get noticeably worse before you seek treatment, as treatment itself can often cause long-lasting side effects. If, for example, your hearing begins to get worse, I would get treated quickly to help prevent any further hearing loss. In the meantime, do exhaustive research on your available options so you are ready to pull the trigger should you need to get treated. This forum is a rich source of information, as well as moral support.

Btw, the "wonkiheadedness" you are describing is known technically as disequilibrium. It may improve (possibly dramatically) over time, but is not likely to go completely away. It is often the worst at the onset of symptoms, and then the brain adapts afterwards. Vertigo is something different and presents a spinning sensation; vertigo sufferers often report seeing the room actually spin. Some AN patients also report having oscillopsia, which makes your vision bounce up and down as you walk. I had all three symptoms: vertigo, oscillopsia and disequilibrium. But now I just have disequilibrium as you are describing, and it's very mild -- sometimes all but unnoticeable -- on most days.

Best wishes,
TW

[Keeping Up]

Hello Cola

I too am a W&W with a small tumor (8mm x 5mm) - mine is all IAC.  Luckily, I have no vertigo (my nanny, my sister and my boss have all had bouts with serious vertigo over the past few months and can barely function - my sister had an MRI, nothing to be found, so thankfully my sister isn't an AN candidate) or other difficult symptoms aside from hearing loss, tinnitus and intermittent, infrequent bouts of the 'spins' (thankfully, because I can't walk when it happens).

I am also relatively young, but have 10 years on you.  I was diagnosed almost three years ago. 

I do have research done by my first doctor in Toronto (I moved to Alberta a few months ago so am an ex-patient, I guess) which suggests 65% of the small tumors show no to very minimal growth over a 10 year period.  IAC tumors are less likely to show growth.  His research also suggests that W&W then subsequent treatment (i.e. the 35% who 'failed') shows no additional ill effect as if you were treated upon diagnosis.  Failure, in general, occurs within three years of diagnosis ... I have 6 more months to make that finish line.  I also have a comparable UK study with slightly different results but conceptionally the same - most small tumors may not grow (remember thresholds on MRI machines, so that may mean less than 1 or 2mm) over an extended period of time.  If you PM me with your email address I will send the information.

Alas, I am W&W.  In my opinion (as well as all the specialists I have seen), I have limited risk to wait and more risk if I seek treatment.  I am very good about my follow-up MRIs and know I will seek treatment as fast as possible once an experienced/knowledgeable doctor suggests it is time.  Remember, I very very (very!!!) lucky that aside from hearing loss, I am practically asymptomatic. 

The biggest thing I have learned on these boards - no right anwers.  What two people do with identical sized and located tumors can be incredibly different - and be right course of action for that individual.  There are risks with every decision - you have decided which is the best way to manage your risk for your tumor, your personality, lifestyle and expectation of quality of life.

Unfortunately, I can provide no help with the vertigo.  I think that is more than a reason to seek treatment or at least understand all the options available to you.  Quality of life is key to me ... and being afraid to drive, or feeling off all the time would seriously limit my ability to live my current incredibly busy life with my four little ones!!!

All the best,

Ann

[ColaBurns]

Thank you everyone. I received a call today and all I was told by a nurse was that there is no change. That was all she could tell me. This is actually the 2nd time that I've had a "nurse" call to tell me "there is no change". Never actually talked to the Dr either. I'm guessing what I'm feeling isn't so much of vertigo as it is the whacky head feeling like constantly being stoned (dont ask how I know that lmfao) or buzzed. I dont like the feeling but at the same time I dont want to look into treatment just to make it worst. My hearing is fine, I was told I had minimal difference between the 2 ears the last time I had my hearing tested which was 1 year ago. They want me to have routine MRI's done every 6 months but couldn't that in itself cause long term effects?? Just a thought. Anyways thank you everyone for the replies the warm wishes. Never thought a BB sized mass could cause so many issues! And for those that wanted to send me stuff please do so. You can PM me here.  Thanks again everyone I really appreciate it!

Cola Burns


(Personal email contact info removed for security as noted in Forum Netiquettes.  Folks are more than welcome to email/PM here. You can share your personal contact info behind the scenes for your own security. Thanks for understanding! Phyl)

[nftwoed]

Hi;
  Just to mention, repeat MRI has not proven to be detrimental yet in those with healthy kidneys and can tolerate the gadolinium contrast. I've had over 20 MRIs with contrast.
  Seems physician contact is indeed growing less all the time in many institutions.
  Wonky head is caused by vestibulopathy. Bilateral Vestibulopathy if both your ears are affected. What a yuk feeling I know all too well. Toss in some oscillopsia and I'm ready for a nap. Sleep is the only escape, BUT, I've had dizziness wake me up a few times.
  Re, true Meniere's, it affects only 2% of the population. Most attacks are at random and incapacitating, lasting about 24 hours with recovery a couple more days.
  Best wishes in your choices, ColaBurns!

[Tumbleweed]

Expounding on nftwoed's last post, MRIs use magnetic imaging (not radiation, as in X-rays and CT scans) and are in themselves deemed totally harmless. The gadolinium that is injected for contrast is virtually eliminated within 24 hours if you have healthy kidney function and drink plenty of fluids immediately after your MRI session ends.

So, unless you have diseased/depressed kidneys, there is no reason to be concerned about getting multiple MRIs.

Congratulations on the news that your AN's size is stable. That is the best you can hope for.

Best wishes,
TW