ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: FLsunshine on October 15, 2010, 11:44:46 am
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Hey everyone -
This forum is great however many of the posts concerning pre-treatment symptoms are from those that have medium to large ANs. I'm hoping there is some of you out there that have a small AN like me... 4mm... and can shed some light on any symptoms you are experiencing. I was diagnosed in 2006, little growth (1mm) since then BUT the last 2 months I've had some horrible symptoms and I can't believe this tiny, little AN is the cause of it all so I'm looking for some validation from anyone in a similar situation.... cause its driving me crazy having these symptoms. So here they are:
DAILY HEADACHES - not really strong just a constant pressure that is on the back of my head and sometimes moves to the side or front. I wake up in the middle of the night and just grown that this feeling is still there. A few times the headaches became very severe right under the back of the skull... and lasted for hours and 1 for 4 days. Just diagnosed with two bulding discs in my neck so am seeking treatment to see if that is the problem.
BALANCE - slight dizziness and nausea especially if I turn my head side-to-side too quickly like when I'm shopping in a supermarket aisle or reaching for soap in the shower. Maybe its the confined space that is triggering it? Also I've been side stepping a lot... like I'm just a bit drunk. Last night I side stepped and when trying to catch my balance I rolled my ankle. I'm worried that people will notice this weird walk (doesn't happen all the time but more than I'd like) and mistakenly assume I'm on something -- especially at work.
WONKEY HEAD - lately when I walk it feels like I'm walking on a boat... the slight rise and fall motion of the water felt with every step I take. This happens at least daily but subsides.
FOGGY HEAD - everyday I just can't concentrate, I feel so "off" like if I've taken cold medicine.
FATIGUE - omg... very severe.... I can barely keep my eyes open by 2:00pm and no amount of "extra" sleep seems to help. It is starting to be very debilitating in my work and my nomrally active, athletic lifestyle that has come to a complete stop.
COGNTIVE ISSUES - mixing up words a lot or transposing letters.... seems my brain is thinking one thing but my mouth or hand is doing something different. I also can't seem to follow map directions anymore... I drive from location to location for my job and this used to be a piece of cake yet now I find myself easily confused, get a mild anxiety attack, and seriously can't tell N from S to E to W... very scary.
Maybe some of these symptoms are just from the intense fatigue... don't know but I'd like to hear from some of you. My MRI is current and my hearing just retested (totally fine). AN is on the balance nerve only.
-- Suzanne
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Suzanne ~
Thanks for presenting pertinent questions for those with small ANs.
My AN was large so I'm not qualified to respond but I must mention that symptoms can vary - sometimes wildly - due to location, as well as tumor shape and size. Some AN patients with small tumors have intense issues, as you do, while some with large ANs, as I had, only experience debilitating symptoms when the tumor has grown enough to really push on certain nerves and/or the brainstem, as mine did.
That stated, I'll be interested to see the responses to your query.
Jim
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Suzanne
As you probably are aware AN,s cause different things in each of us. I too had a small AN 5mm when is was discovered. Yes my head sometimes feels full but I take a supplement that really has reduced that feeling. I also have tinnitus which is annoying. My balance seems a bit off but has gotton a little better with the exercises the doctor recommended. Headaches are common for those that have AN.s.
Don't know when your next MRI is scheduled but my AN suddenly hit a growth spell. It has doubled in one year after having no growth for 2 years and that is when things changed for me. You may want to talk to your doctor about what is going on.
Hope this helps
TJ
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Suanne,
My AN is small. Located in the IAC near the semicircular canals. Little hearing loss but lots of balance issues. I find I do not deal well with stress. That is an understatement. I avoid making decisions. This helps with the concentration problems. I am happy to stay home except for walking with a friend. I have been able to quilt and read some. I hope the neighbors don't see me when I am veering around the yard. The tilt and veer seems to be getting worse the past week. Being tired always makes things worse. The ANA's article "Improving Balance" was very helpful for me in understanding why I was having the wonky head, tilt and veer and concentrations problems. Worth reading several times. Would like my friends to read it. I had GK in July. I am hoping that things start improving in the next few weeks. :)
Jean
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OMG.... just found the info below from the Vestibular Disorders Association (VDA). I'm not going crazy afterall -- first two bullets are exactly what is happening to me! Thought I'd share with anyone following this post.
Cognitive Disturbances - The vestibular system is closely linked to parts of the brain involved with absorbing and interpreting information, including mental functions such as planning, sequencing, attention, and concentration. It is also responsible for controlling eye movements and maintaining a steady gaze. Because of these connections, people with vestibular disorders commonly experience cognitive disturbances such as:
* Decreased ability to track multiple processes: Rapid shifts of attention, such as those required when driving a car, are more difficult.
* Difficulty handling sequences: Words and syllables get mixed up, letters and numbers are transposed, and conversations and stories are harder to follow.
* Decreased mental stamina: Prolonged concentration becomes more difficult or impossible. People accustomed to spending uninterrupted hours on a task at work or at home suddenly find that they need frequent breaks.
* Difficulty reading: Text in printed matter or on a computer monitor often appears to bounce or blur.
* Difficulty with memory: One of the most common and troubling dysfunctions is the struggle to take in new information, store it into long-term memory, and retrieve it later.
* Difficulty with large concepts and uncertainty: Integrating small details into a larger picture is more challenging, and people often feel a frustrating lack of closure. All the pieces are there, but can’t be put together.
People with vestibular disorders (such as acoustic neuroma) may have little or no difficulty with such tasks except when fatigued or in a busy environment. The fluctuating nature of these symptoms makes it difficult for standard neuro-psychological tests to assess the degree of difficulty people experience in day-to-day living.
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FLSunshine,
I have had very similar symptoms to yourself.
I lost my ability to type, I just couldn't do it.
Normally I could spend hours on complicated tasks, but I was not able to do that.
My concentration was abysmal
I have had my AN treated and now my symptoms have reduced markedly.
Concentration has improved and I can type again.
I am still not back to normal but things have improved immensely.
It should be noted that I am unsure whether the cyberknife treatment has had anything to do with this recovery.
But I figure the treatment will stop changes occurring with the AN and eventually my brain will work it out and the dibilitating symptoms will stop.
Thanks for the information for VDA, this goes a long way to explaining the symptoms I have had.
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Suzanne - Everything you mentioned sounds like my hubby and myself (we both have brain tumors). He's had two surgeries and one Cyberknife treatment for a benign meningioma in the left parietal lobe. I have been a wait and watch patient for 9 years on a 9th cranial nerve (brain stem) neuroma. When I think back a few years, I feel my symptoms have increased even though my tumor is extremely slow growing - 5 mm over 9 years. We both feel worse when we are tired which is usually late afternoon on. He has gone for vestibular training but not sure it helped very much. We take meclizine (Antivert) which helps somewhat. He hasn't driven much since the last craniotomy (7/9/09) as he does not feel confident and also has concentration and coordination problems.
We are snowbirds and hope to return to "clog" up your roads soon :D
Sheryl
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HI everyone. I was diagnosed in June with a 4mm acoustic neuroma. My hearing is fine, no facial paralysis and some ringing in the ear of BOTH ears but other than that the only thing bothering me really is the Vertigo. Its insane! Sometimes I'll have a full blown attack which lasts a few minutes and I feel as though I'm the most intoxicated I have ever been. I had a follow up with my ENT today for something totally different and I've been having some severe allergies recently. Well it turns out the ear canal with the tumor is completed filled with fluid and causing the canal itself to swell up so we have post poned all VNG and balance tests until after this clears up. I was that the kind of allergy attack I am suffering is the same as though someone who is allergic to peanuts eats peanut butter. My throat was starting to swell a bit but all I did was breath air so I have to have a number of tests done now to determine what is causing my severe allergic reactions. If we get this figured out and I am allergy free and my Vertigo remains then I will go have the tests done but at 28 years old the last thing I want to hear is brain surgery so I am completely fine with staying in the watch and wait group until this thing grows then we'll consider our options. So that's my story, it was actually the vertigo that prompted the EMT to do a CT scan and we found the little bugger. I hope everyone else is doing well. Have a great weekend!
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Hello all
I don't sign in much anymore but thought I would comment here.
I have a small tumor, IAC (see my siggie!)
I have hearing loss (about 40db on the affected hear but I have 'child like' uber perfect hearing on the right ear - like negative 10db), tinnitus and random bouts of the 'spins'. I don't think I am good at walking down the subway platform in a straight line which does concern me at times. I misinterpret my husband (in our loud/busy) house constantly to his frustration.
However, otherwise, I lead a completely normal life. I have no headaches, I am the very busy mother to four young children, the wife to an awesome husband and have what I have now just accepted as a very stressful job where I juggle many different requests and people each day, make decisions on odd ball requests every hour that create (or lose) money, and work way too many hours (I work for an investment bank). My memory is my saviour because I am completely disorganized!
I know many on this site are very much impacted by their tumors, and this message certainly isn't any attempt to rub anyone the wrong way - just a message for the W&W of small tumors, that life can be completely normal (or perhaps completely insane with noimpact from your tumor).
The advantage - I can't hear anything at night when I sleep on my good ear, so I sleep magnificiently!
Ann
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Hell fellow small tumorettes...just thought I would check in and see how everything was going. My dizzyness is still pretty bad and now I'm having some massive migraines which seem to have absolutely no cause as there is no infection, swelling or blood clots. Not sure if its the tumor causing them or not. At this point I'm 28 and seriously considering surgery if it will just get rid of the danged headaches. I'm learning to cope with the dizzyness, pole dancing shall be no more lol, but these headaches are really starting to my home life and work. SO just checking in to see how everyone else is doing and if there is anything new.
Have a fabulous evening,
Cola
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Cola - how did youir VNG testing go?
I've been watching various posts and it seems that you, me and Jerseyboy all have similar size ANs that we are dealing with.
As for me, I thought my recent balance issues seem to have gotten better as my brain compensated for my right ear AN. Took about 7 weeks. But then today I wake up and feel very foggy headed.... like if I drank a bunch of cold medicine and the wonkey/bobbly walking feeling is back. My heaadaches continue and doc says no correlation with AN. I'm on topmax (sp?) for migraines now but still not consistently helping. 3 hour headache last night. New issues last couple of days of severe fullness in my right ear and wet trickling sensation in ear and behind it on my skull (like when you have an IV put in your arm and feel the coldness go through you veins). Between the headaches, severe fatigue and cognitive issues I'm feeling pretty depressed. To give you context, I'm 44 and normally a very physically active person (running, working out, golf, etc) as well as an executive with a lot of responsiibilities (thus multi-tasking, quick decision making, concentration, giving speeches, etc are all key). However, nowadays I can't focus, I can't follow driving directions, sometimes simple arithmetic (like yesterday trying to substract 8 from 52) is impossible and I completely blank, my words get mixed up when I talk and my writing is transposing words (thank God for spell check!).
I just don't feel like ME anymore. Forget getting to the gym or running as the working out triggers my headaches. This life right now SUCKS and I my AN is so tiny that I don't understand why I'm having all this trouble!!!! I was going about my life nicely the last 4 years since diagnosis then... BANG... these symptoms gradually crept up on me until the last 2 1/2 months when they've become debilitating and affecting the quality of my life and messing with my head (no pun intended). And the dang tooma only grew 1mm so what the heck is going on? Extremely frustrating, isn't it?
-- Suzanne
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Though I didn't know I had an AN when my AN was teeny, I did have numerous years with plenty of wonky head and debilitating vertigo years prior to my diagnosis. I eventually just accepted that it was a lifelong sentence of vertigo and I "learned to live with it." I was homeschooling one of my boys during some of the worst of it...I still feel guilty about the number of days/weeks I was unable to teach him. Good news is, that my brain did eventually compensate and I was able to function near normal again...AN was discovered roughly 8 years after those initial symptoms...
Hang in there, I know it is truly awful, but it should get better! In the meantime, know we are all here for you guys!
Cindy
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Suzanne,
We have quite a similar situation. Mine was partially solved when my doctor(s) reviewed the meds I was taking. He changed my high blood pressure medication and reduced the dosage, and the headaches went away. I still frequently have a wonky head, particuilarly when I try to walk fast. But, with the absence of headaches it's a big improvement.
Jeff
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Hi,
My AN is also small, 2.5 years of W&W also, my symptoms are usually daily headaches, some dizziness, fatigue, and balance issues. On occasion have ringing in my ear, facial pulling or numbness (AN is on my right side), minor ear pain, numbness that goes down the side of my neck, down my arm and sometimes my hand goes tingly. Also at times it feels like I have a sore throat but don't. Anyone else want to chime in????
LisaP ;D
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Hi Everyone. I didnt do the VNG testing because I had an ear infection and the Dr wasn't sure if that would give some false readings so we put it on hold. I actually made an appointment to hit up Mayo Clinic in Scottsdale for a 2nd opinion and probably to get some more information so mid December is when I go in to see them. The Vertigo is still pretty insane but I've actually calmed down on the headaches which is a good thing. I'm under a lot of stress at work so not sure if that has something to do with it but it could be. On a side note tomorrow night is my first time trying to go see a "movie" with this thing in my head. Not real sure how I'll do but we'll see. I dont drive as much anymore and I try to stay away from things that tend to make the dizzyness worst, like alcohol lol. All in all not doing too bad but I'm hoping I can get some more diffinitive answers from Mayo in December and maybe have a better understanding of why I get the muscle twitching on the right side, headaches on the left and vertigo. Wish me luck :) Glad to hear everyone else is doing pretty much ok! :)
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Hello all!! It was interesting to see everyone's responses to this. I had an 8mm and I was losing my hearing fairly bad when I decided to go get it checked out. I also have had tinnitus for about 3 years prior. Then the third thing I had that was out of ordinary was a couple of times I would wake up with SEVERE vertigo, the room was just absolutely spinning with no stopping. So in many ways my symptoms were like most everyone else, in one form or another!
Jay
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Hi Jay, what was your deciding factor to have this thing removed? I've been debating for the past couple of weeks as the Vertigo is really starting to mess with me and now I'm having random bouts of facial twitching on the right side where the tumor is. Hoping to get more info in a month at Mayo Clinic!
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Suzanne,
My AN is also 4mm, has shown no growth in the last 18 months, yet my symptoms are similar to yours, and they're terrible. Last week I had another vertigo attack for about 8 hours and had to stay home from work. I saw one doctor last week, who recommended Vestibular Therapy, and am seeing another tomorrow. I have noted that exogenous varibales really set me off. First, listening to the radio or ipod via in-ear earphones sets off my (headache) symptoms. I now avoid in-ear earphones. Second, eating very salty food, such as salty popcorn, sets of my (vertigo) symptoms. Vertigo can be generated by a change in the level of fluids in your system, which can be affected by the level of salt in your system. Try avoiding salt and see if that helps. I'm flying to Florida next Tuesday night. If you're near Palm Beach or Delray Beach we can meet for a drink in the evening and share information.
jerseyboy
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Hi there!!
Its amazing how such a small AN - 4 mm - can cause such problems. I guess a lot has to do with location. While mine is 12 mm, I did have symptoms but they have reduced to mainly tinnitus. Everything has pretty much stabilized since diagnosis going into 4 years now. What I did do I have mentioned before in W+W posts of basically a healthy lifestyle with supplements and exercise. I used to get migraines which I have reduced to basically the warning signs (aura) then just fades away with no or very minor headache. I can live pretty much a normal life like this also considering that things were worse for me even before diagnosis. Keeping the faith and hoping everyone feels better soon. Happy Holidays! Mickey
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7mm AN on left, first diagnosed in 2006 at 5 mm. My symptoms began with hearing loss, tinnitus, dizziness and facial tics. Botox relieved the tics. Dizziness gradually diminished as I carried all work either in a backpack or in front of me. Without heavy briefcases in one hand, my body re-learned its center. I still catch myself walking diagonally thru parking lots sometimes, but I feel confident driving again. The tinnitus can drive me to distraction and has become almost constant. Speakerphones or pressing the receiver against the bone above my ear improves telephone comprehension. I often must reflect back others' statements to make sure I understand them. I have reduced facial function on the left, uneven smile, incomplete blinking, tearing and limited movement, partly masked by a full beard. I sought treatment for depression, which has helped improve concentration. Some days are just hard, and I do less.