Symptoms - Looking for medical references explaining symptoms

[Barberry]

I have not had much luck and am seeking help finding material explaining symptoms from a physiological or anatomical point of view.  I have a 2.5 cm. acoustic neuroma or meningioma slightly indenting the brain stem.  My hearing is normal though I experience fullness in the affected ear.  My major symptoms are a feeling that I am in constant motion such as being lifted up by a wave and dropped down (or rocking motion) that is the same rhythm as the heartbeat.  I also have trouble with certain visual tasks.  Reading is very difficult for me, driving on winding roads or though sunshine and shadow, grocery shopping looking at repeated products.  When I went to the movies a year ago it took me days to recover.  Also experience much fatigue and bouts of insomnia.

I am wondering if others experience these symptoms and if you have found clear explanations of how the tumor is related to them.  For example, I find the vestibular-ocular reflex difficult to understand and would like to understand the connection if there is one.  Many thanks for any help with any references for the layperson or medical journal references or your own explanations.

[Kathleen_Mc]

I can relate to the insomnia problem but can't explain it. Before my orginal tumor was found my primary complaints were severe headaches and insomnia, and loss of sensation in my cheek.I was on major pain medication and sleeping pills for about 3-4 years before the tumor was found...I wasn't lying awake in pain or worry I just couldn't sleep no matter how tired I was or what I did, over time the sleeping pills weren't strong enough either. I was unaware of the hearing loss (which was 50%) and didn't sense the balance issue either. Kathleen

[Raydean]

 First of all I'm not a doctor or anyone special, just a wife of a AN patient.  I believe that changes in sleep patterns could be related to the brainstem.  My husband was told post treatment that anytime the brainstem is touched there are changes in sleep pattern.
 
Visual changes can be a neurological response.  As an example my husband developed nystagmus from his AN journey.  It was also because of the eye pain that the hydrocephalus was found. ( Please keep in mind that his tumor was extremely large and that his occurances are rare).  There are many responses thru out the body that are associated with being a brain response.  (Remember when the doctor taps you on the knee, elbow, and heel?  These are neurological responses from the brain, not the knee or arm.

The balance issue can be the cause of the fatique.  Your body is using alot of energy trying to adjust and to keep you upright.

A good neurologist would be able to assist you in understanding where these issues are comming from and my be able to direct to in theraphies that may help.  We found the evaluation very insightful and really helped us to understand things.  probably one of the most valuable things we did.

Best to you
Raydean

[Barberry]

Thank you so much Raydean and Kathleen for your responses.  I had not checked this site for a few days or I would have answered sooner. 

I am so interested in what you both had to say.  This last week I have been wondering if a different complex of symptoms happens when the tumor presses the brainstem.  Since 2001 I have been trying to recover from chronic fatigue syndrome and adrenal insufficiency.  It took until December 2004 for the acoustic neuroma/or meningioma to be found because my hearing has been normal.  I haven't had surgery yet.

I had never checked out this site before this last week and it was only then that I learned about the connection between vestibular dysfunction and cognitive changes.  These symptoms I had kind of put on the back burner and brushed them off till then as part of the chronic fatigue syndrome.  That got be thinking along entirely different lines.  Till this week I thought I had simultaneous conditions going on but now I'm wondering if I was going down the wrong road for quite a few years and that there are others with undiagnosed acoustic neuromas or cerebellopontine meningiomas thinking they have conditions similar to CFS.

I'm so glad, Raydean, you mentioned changes in sleep patterns when the brainstem is touched.  Awhile back I had read that the reticular activating system, which relates to sleep and wakefulness, is part of the brainstem and I wondered about that then.  Kathleen, I was wondering if your tumor pushed on the brainstem.  I too have so often been exhausted with no sleep in sight.  One of the theories behind chronic fatigue syndrome is an out of whack hypothalamic-pituitary-adrenal axis and I wouldn't be surprised if the brainstem plays a part in that axis.

Well, lots to think about.  Raydean, I think it's a great idea to see a neurologist, something I should have done before.  It makes so much sense also about what you said in regard to visual changes and also balance/fatigue.  Thank you both again so much.  I'll be doing some research.  Best to you both and I hope your husband is doing well, Raydean.  Regards, Barbara

[Windsong]

Hello Barberry,

I read your post and the answers so far and perhaps my own experiences might help in some way....

Re:  visual tasks:  you spoke of trouble reading... I am assuming this is with your eyes and not from holding up a book ... is it blurry vision you speak of?... there  are some diagnoses that have blurry vision... could an AN do that? i suppose depends on where it is...I have had probs vision as it can change hourly never mind daily weekly monthly...

RE:   fullness in the ears:  from what I have been reading, many Aner's have that....I have had that too.... still do lol....it drives me nuts when it happens big time....

RE:   driving winding roads..... well I've had that..... makes me feel oops, but really it's not the winding by itself, it's the total thing... like speed, light (i.e. sun, shadows, clouds, reflections, dark etc.), number of lanes, amt of traffic, and so on..... so it varies and can be no problem at all or noticeable....

RE:  grocery shopping.... amazing how many folks with vestibular issues never mind an AN have a problem doing that......I figure it's because of narrow or long aisles, number of folks passing you, the souind in the store  like piped in music or the family next to you babbling away, How much you have to swivel your head to find and grab and load the things you need to get, (i.e. do you know where/ what/ the items are  OR do you have to scan shelves up and down and sideways to find that ONE item?... that last bit is not so good lol... guaranteed to send you into a spin especially if mega tired....

RE: fatigue.... I bet that's because your body ! is working so hard at all the sensory input for one thing........plus, really, I think if your vestibular system is compromised by an AN's location wouldn't one's body be so busy using other sytems to stay upright (like eyes and muscles) that  anybody would be kind of really tired from all that.....one's body systems  work so hard at staying upright, so even if balance is not a major prob but only minor, your body is always looking at how to be vertical .....and that takes lots of energy.....

Your post is quite thought provoking as not many have asked about these things and yet I think they have a lot to do with  having an AN or vestibular probs of any kind ....

I am sure that the degree of variability of the above symptoms depends on many factors, including where one has the AN, which nerves are  being affected and all of that..... and I bet that in some mysterious fashion, minute amts of every day type of swelling have something to do with degree of symptoms but that's just an idea that came to me right now .... as I have no med background at all... simply lived with symptoms for quite a few yrs before  diagnosed.....and thus had lots of time to think....

I am thinking not too many docs or other people realize how much all of these symptoms can affect one's life and change it.....

Do know that you are not the only one with the symptoms you raised in your post.... and I hope you find answers to all of them...

[Barberry]

Many thanks, Windsong, for your detailed and thoughtful reply.  You too lived with symptoms for years before diagnosis and it can be a long struggle to find answers.  I came up with a different theory every month.  It's only lately that I feel many of my symptoms attributed to CFS may have been caused by the tumor.  My main worry was that if I was this debilitated for years by a secondary condition, would a long and complex surgery really push me over the edge.  I imagined that when asked which of the three treatments I would choose I would say a fourth option - to be hit by a bus.  

But lately I have a more positive outlook and am hopeful that surgery will alleviate the symptoms I have been experiencing for years.  The vision symptoms that I have had for two years are not so much acuity but when I try to read the feeling of motion I constantly experience becomes much worse and I lose concentration, comprehension, get irritable and fatigued.  Books and literature were my chief interest and livelihood and now I'm hoping that surgery will enable me to read again.  I really appreciate your response and I hope you are doing well.  Regards, Barbara

[barbjo]

These posts help alot.  Especially, "RE:  grocery shopping.... amazing how many folks with vestibular issues never mind an AN have a problem doing that......".  I thought I was the only one.  Shopping makes me dizzy at times.

I do have a question on insomnia and fatigue.  I can't sleep at night easily any more, it takes hours for me to settle down.  I figure the next night I will be exhausted and be able to rest...nope.  But come about 3PM I am ready to drop, but if I try to nap...again no sleep.  Body is tired head won't let me rest.

Please tell me someone else may have experienced this? 

Thanks! Barb

[Frying2Knights]

Hi all

I have had surgery to remove my AN and did not have any symptoms other than tinnitus and slight hearing loss prior to surgery.  However, I have experienced some of these since surgery, which may (or may not!) throw some more light on the subject.

Fatigue - after surgery I was naturally exhausted.  However I was told that a large degree of this is because the body uses an awful lot of energy dealing with the changes in stimulation to the brain (due to hearing loss).

Driving - I found this difficult post-op due to not feeling able to look around properly.  Not physically, it was more like when I looked left, then right, I saw everything in between rather than what I wanted to see.  This has now settled down but I believe this is linked to balance.  I still have temporarily impaired vision on waking which the doc says is the balance mechanism still correcting itself.  And yes - shopping!  I can stand on one leg or walk on the spot for the doc but put me in a busy shop and it's like being on a boat!  Again, I think it must be the brain trying to make sense of the balance stimuli - that is, while it's still figuring out what to do with what the eyes are telling it, it can't cope with the changed stimuli from the ears.  The brain relies on a number of stimuli for balance - the ears, sight etc.  I have been told opposing views on this - pre-op I was told the brain soon compensates (which to a good degree it has), post-op I have been told that putting one out of whack (ear) affects the finely balanced (no pun intended!) set-up (hence the lingering balance problems).

It seems logical that if your AN is affecting your acoustic nerve or similar then this may bring similar results.

I hope you find some answers and some relief.  What your post also highlights is how hard it is to get some solid info when you have an AN.  It is a common experience whether in the USA, UK or wherever.

Best wishes

[Static]

Oh my!  Over a year since my surgery and recovery and I am seeing that other people are going through exactly the same thing I was but I was unable to explain these symptoms to my doctor in such a way that I could make him understand but I do understand exactly what you are talking about, I just can't express it well.  I also found, that when driving, as long as I was the driver, I did better and when I was a passenger, to this day, I got more "dizzy" so to speak.  To somewhat alleviate the feeling I was getting but unable to describe properly, (never used to have this problem before surgery) if I put my head against the headrest it was/is not as bad.  I would tell my doctor about these things and he would look at me and give me the feeling that he didn't understand me or that I was being too sensitive or something.  I just figured maybe it's just something that I'll get used to but I never have.  It is still with me.  Maybe not quite as bad but it's there.  Maybe I will get even more used to it, time will tell.  The fatigue, well, I don't think I'll ever get used to that one.  Sleepness nights, how long can I go on using a sleep aid? 

I never wrote anything in here about this because, well, I guess I just didn't.  I think I just felt like I couldn't express myself in the right way  :-\ 

What your post also highlights is how hard it is to get some solid info when you have an AN. It is a common experience whether in the USA, UK or wherever.

Ain't that the truth! 

If anyone ever gets any definitive answers about this stuff, please share.

[Kathleen_Mc]

Barberry: sorry I didn't respond for a while, On the first Tues. of Sept I has surgery to remove the tumor regrowth I had. I don't know how often I'll be getting on line for the next while. In answer to your question about sleep disturbance and closeness of my orginal a.n. to the brain stem...although to this day I have never asked the size of that tumor I do know it was within mm of the brain stem and displacing the opposite posterior lobe of my bain and it was very easy for me too see on the m.r.i. (at that time in my life I had never seen an m.r.i. image). Kathleen

[littlemissrory]

Hi...I've not been on the site in a bit, your questions definitely caught my attention.  Before I was diagnosed with an 8mm AN in April of 2004 I made several trips to the doctor for constant nausea and some vomiting.  I also made several trips to the eye doctor for vision "issues" I could not explain- it was as if I were looking out...I know it makes no sense...visually things were not right.  There were zero problems with my eyes and he suggested going back to the neurologist-shortly after I got my diagnosis.  Surgery in May of 2004 was very successful and the visual problems, nausea, vomiting and nystagmus went away quickly.  I still have some difficulty , as you do, in the grocery store or in the city trying to look as I walk...the body says no.  It has definitely subsided with time.

My tumor was quite a bit smaller and not touching the brain stem...these tumors seem to do to the body what they want.  For mine being so tiny it made me so ill, yet there was no hearing loss at all.

A year post surgery and I feel great.  I wish the same for you, just know that although I am not a doctor and have no medical proof- similar visual and other problems happened here too.  Best of luck

[Judy MacPhee]

Help, very new, first time. I need to know what you know. I have had headaches, bearable ones mind you, but for over a month now. I am not prone to them at all. I wake with a headache, like dull or hang over kind, I am nauseated too. The nausea passes after I am up but the head ache stays and ebbs but comes back too, It really is never gone. I saw my doc, he is ordering a CT scan, here in Nova Scotia you have to wait for months for a CT scan. I am seeing a neuroligist on Thursday of this week, My doc suppects a brain tumor??? but what do you think, Anyone out there with my systems or had them, what happened to you, please anwer. My vision and hearing seem find, my right knee wouldn't jerk for him though, what does that mean?? My head is like pressure, a vice. I was give tylonal 3, I take it only when really needed. I sometimes go to bed during the day with this thing. Somedays are better than others, Please help. Thanks Judy

[Raydean]

Hi Judy

Your neurologist should be able to speed things up and shorten the wait for your CAT scan by requesting a priority status.  You could also ask to be notified of any cancelations in the CAT scan dept.  Is he doing a CAT scan with contrast?  It's an important factor in diagnosing acoustic neuroma
tumors.

The knee jerk when tapped is not a leg response, but a neurological response from the brain. 

We will be thinking of you and wishing you the best.
Raydean

[Judy MacPhee]

Thanks Raydean. Could I give you all my systems and maybe you could take a guess as to my problem. Don't worry about the guess thing, I know the difference and I don't panic ok. I have the headache for over a month. I have only had two day lately that I did not wake with one but only two days, otherwise it is there when I wake. I wake nauseated as well. When I get up the nausea passes after a short time.The headache does come back before the day ends. It is like a vice, it can be only in the back of the head or back and top of head. I take the tylenol 3 when necessary. I have slight inbalances, not too bad here. I had tingling in my left hand, pins and needles sort of thing. The right knee didn't jerk on testing, and my head feels like a presure cooker when I have the headache ( which is all the time) It really does interfere with my everyday living. My work, my home and my mood. As for the CT scan, I don't know what type was suggested, I didn't know there were types. My vision is good too. I have graves eye disease so I do have double vision with out my glasses so its hard to tell ok. Doc said eyes were ok. I sometimes have to think about what I am saying, its like the thinking process is off slightly, I do not have a problem speaking, I just have to think first. I have been on the net and I do know it can be a number of things besides a tumor, I am not a panic person but I have little patients with time and needing to know. I need to get on with my life and this is getting in the way.  I don't know what if any experience you may have but I would like to hear from you as to an opinion. I sometimes think its all in my head ( no pun intended) I really hate to look like a fool. So I hope you will anwer me again, Thanks, Judy from Nova Scotia oh yes, yesterday was the first time I had a very loud ringing in my left ear, what is that.

[Raydean]

Hi Judy

I have no training in the medical field, but based on personal experience  CAT scans are ordered for many reasons.  The symptoms you list can be due to many different illnesses and diseases, from something minor to major. Which is why your doctor is requesting the CAT scan. Based  on the results of the CAT scan he/she might follow up with a MRI.  CAT scans are cheaper then a MRI which is one of the reasons they start with a CAT scan.  I've had CAT scans ordered for my husband and 2 daughters (adult)   Each had some symptoms in common and each had 3 different diagnoses.  My husband had a AN, one daughter MS and the other daughter Chiari type 1.  CAT scans are an excellent tool in diagnosing.

The ear noise is called tinnitus, and can be related to many things from salt intake, to dental problems from minor to major thing

It should be added to your symptom list  We found it easier to list all symptoms on paper for the doctor.  This way nothing is forgotten.  We also listed family health history.  Both are important factors.  Judy , stay strong and know that members of this list are keeping you in our thoughts and prayers.  Each of us knows how difficult this waiting time is.  We will be here for you when you find out exactly what is wrong.  Till then keep track of your symptoms and problems so the doctor has a clear picture.

Thinking of you
Raydean