ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: opp2 on October 28, 2009, 04:43:13 pm
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Hello everyone. I'm not certain that this is a balance issue but I certainly am freaked out about it. Today is the second time I've experienced this problem. I often have issues on standing up after sitting for extended periods and as I've noted on other posts it is wooshing in my ears/head, pounding (not painful) and my ear feels like it is blocking up.
I can usually defeat this little monster by sitting down. If I don't I get the funky kaleidoscope lights in my eyes. Today I had to pick my daughter up from school so I drove there 40 minutes or so. When I got out of the truck to get her, I started to feel the wooshing etc but this time it was like my feet/legs weren't working. my right foot dragged on the ground although I felt like I was walking normally. Then I took another step and it really dragged, and then skipped a little. So I squatted down right there on the sidewalk. I let the few minutes pass like I normally do, and all was well, except I got the funky lights.
This happened last week and I think I was in denial, cause I didn't do anything about it. You know what I mean, we say like that was interesting, let's see if it happens again...
I was wondering if anyone experienced anything similar to this. No one has ever mentioned if they have the wooshing and the lights either. My MRI's only show the AN so I don't think there is anything else going on in there...hopefully :-\
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Hi there Opp: I don't have all of your symptoms, but I found post op when I get the pounding/wooshing, & it tends to run mainly right down the center to back of my head, I'm usually dehydrated. The foot dragging - if your foot didn't fall asleep from the sitting position, I don't know what that's about, but does sound nerve related.
I'd definitely check with your PCP just to make sure.
Good luck, always good thoughts, Nancy
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Nikki
Sorry you are having these issues. They are most probably related to the AN, as everyone reacts differently.
I have been following your previous posts as well, about the delays seeing doctors etc. As much as these symptoms are very unpleasant, you can use them to your "advantage" to try to pressure your doctors a bit more. As you may have realized here in Canada doctors are a bit reluctant to do anything when you are asymptomatic. But if you point out to them that you are having serious issues - and balance problems can be serious because they can lead to accidents, they may speed up their response.
Here is a totally unrelated story that happened to me years ago. I suffered from constant runny nose etc. and my family doctor suggested it is an allergy and wanted to refer me to the allergist. Well, I got a call from the allergists' office saying that they had an appointment in 6 months. I exclaimed (in all honesty) "But I am suffering, I cannot wait 6 months". Guess what, I got an appointment in 3 weeks.
Marianna
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I agree squeaky wheel gets the grease!!
Anne Marie
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In my line of work we always say the "squeaky wheel gets the most attention." I squeak something awful when it comes to my health, maybe you should consider doing the same as Marianna suggested; use each occurrence to your advantage.
It scares me to think what they might do to our health system here in the states...I'm fortunate, my employer provides excellent healthcare insurance and I work my skinny little butt off to make sure I stay employed. I served in the U.S. Military for twenty years and had adequate care during that time as well--I've been lucky.
As for those symptoms, I had them all less the vision thing before my surgery...I'd usually just fell down, let it pass and go about my business. I did like Marianna said and told my Neuro about every little thing I experienced. I went from symptoms to surgery in about 7 weeks because of it...or at least I think thats why my case moved so quickly.
;)
Doc
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Nikki ~
I haven't experienced the whooshing, pounding and inability to stand upright after sitting for an extended period of time but it sounds a bit scary and I'm sorry you have to deal with this. While these episodes are possibly AN-related they may have something to do with your blood pressure (which wouldn't show up on an MRI scan) - but I'm not a doctor and can only speculate. Whatever the exact cause, this kind of reaction to sitting for long periods doesn't appear to be 'normal', so I hope you'll contact your doctor and try to secure an explanation, if possible. In other words: squeak.
Jim
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Thank you guys. I did send a message to Dr. Akagami through is assistant, and I am seeing Dr. Guha on Thursday. I will be stopping in at my doctors office, hopefully tomorrow afternoon. I have begun to squeek...
Thanks again...yours in wobbly weirdness..
Nikki
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I don't know about the leg problems afterward, but sounds like maybe orthostatic hypotention to me. I know I've felt the same before in the past (and the squatting down helps) and I have low blood pressure.
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I'm sure there are all kinds of things that might cause your symptoms, but it does not seem like a "little issue" to me. Depending on where you are having to squat to get your head to clear could be a dangerous situation. You could have still been in the parking lot, or there could have been bad people around, or you could have been with your child and unable to run after her if she were to meander away. I don't mean to be alarmist, but your doctor needs to find out if this is related to your AN or something else.
I hope you find out soon.
Sara
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Nikki .....
So glad you have an appointment with your doctor! I, as well, have continued to have the whooshing/pounding in my ears and disorientation when I stand up. I have learned to wait before trying to walk when it happens. However, I have never had the funky kaleidoscope lights nor weakness in a limb when it happens. I think those two things definitely need an evaluation by your medical professional.
Clarice
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Nikki,
I was away, just saw this now.
Your symptoms sound so different than mine, so I can't speak specifically towards them. I will however note that when I mentioned to Dr. A that I blacked out when I stood up (and got dizzy), he questioned me repeatedly about it and asked me questions around the dizziness, but told me that since it only happened when I stood up-that it wasn't AN related, but related to my low blood pressure. Having said that, I had none of the other symptoms you describe. I agree with the others though, these ANs tend to give everyone something slightly different it seems!
I also agree with the decision to call and let them know that your status has changed. I very reluctantly did that (thought long and hard about whether I would be "bothering them" or feeling like I was "whining", but eventually it got so bad that I had no choice. I'm SO glad I did, as I *know* with 100% certainty that it was the reason I was seen so "soon". They do the best with the information they have with regards to determining patient priority levels, and ANY change to your status very well could change your place in line. Can't hurt. I'm glad you sent a note (hope she's not as *****y to you as she was to me the entire time......did I tell you that I told Dr. A what I thought of her after my surgery? It's just wrong that she's so short with patients..........OK, off my soap box).
Please let me know what s/he says. Also-please update me after your appt with Dr. Guha as well......
(hugs)
Adrienne
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Thanks again guys. I do have low BP. normally 90/60 hr is usually around 44 resting...I thought that was part of it too. Still going to the doc as well.
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Hi Nikki:
I haven't been following this site very faithfully and tried to go back to some of your earlier posts and learned that you will be coming to Vancouver to see Dr. Akagami? I had my surgery in Vancouver by Dr. Durity (Dr. Akagami took over from Dr. Durity). I just wanted to say that I hear only good reports about Dr. Akagami and Dr. Durity told me that he would not retire until he found the best to take his place. Dr. Akagami looks over each of my follow up MRIs and sends me a copy of his report. I find it comforting that he doesn't just take the radiologist's word but looks at each MRI himself as well.
As for the 'lights' that you are experiencing, I have had something similar which started about 15 years before I was diagnosed with the AN. I would get these wavy lines in my vision and couldn't focus properly....this happened quite regularly and went away after about 15-20 minutes. Since my surgery, I rarely have this happen but it still does on rare occasions. Very strange...not sure what this could be, although someone mentioned it could be a migraine without the headache (doesn't make a lot of sense to me).
All the best!
Cecile
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Hello everyone,
I saw Dr. Guha today for my consult. I was not able to get in to see anyone at my Dr.s clinic due to H1N1 issues.
Dr Guha and Dr Akagami (via email) feel that the weakness in the leg is not associated to the AN but neither had an answer for me for what it might be. I will still see my family physician as soon as I can get in.
In the meanwhile Dr. Guha is in remission for those who were wondering. He says he is feeling well and if I elect to go further in my research with him and his team, he would not be ready to perform this kind of surgery until the spring at least. He is not ready to do surgery tomorrow he said. I told him I wasn't ready for surgery tomorrow either, with a big smile.
Basically he confirmed the diagnosis and went through things as he sees them. He wants me to see the gama knife people to be able to say that I have spoken to them, and heard what they have to say. While he admitted his bias toward surgery, he put me in the middle of the pack regarding whether he would recommend the GK surgery. ie I'm 44, so not too young, but not too old, and according to official stats I've got 35-40 good years left. :o
He wasn't being off handed, just saying that for a healthy female my age I could consider GK given the associated risks. Also my tumor size the way he measures it, is only 2.1 cm (he doesn't count the part that is extending into the canal).
Comparing the Jun to Oct MRI he sees about 1mm difference. (larger over the time period) but also countered that the slices could be different places. Either way I'm not freaked.
He also wants me to see his Neurotologist Dr. Rutka. He feels he could do either translab or retrosigmoid. My hearing test did not give a score for speech discrimination which is what they wanted, but it does indicate moderate sensory loss in the left ear. He said I should go into surgery expecting to come out SSD, and a realistic expectation for saving the hearing is about 40%.
He wouldn't say what the differences were between retro and TL for the facial nerve, opting to tell me the average for retro is 85-90 acceptable outcome for success, with the caveat that if you include facial weakness in the first 6 months the number is more like 75% successful, 85-90 a few months down the line. Translabrynthine would have slightly better rate of successful outcome than that.
The good news is my facial nerve is not compromised so far. My trigeminal most definitely is being affected by the compression on it, but should be okay post surg. Hearing is anyone's guess. Apparently my balance is pretty good too. (ha, just wasn't walking like a drunken sailor today).
And, the rushing in my head accompanied by the pounding/pressure is not an intolerable symptom according to them. I wonder if I don't explain it well enough. Next time I'm going to tell them it's like someone is sitting on the back of my head and my head actually leans forward with the 'pressure' ;D.
All in all, a pleasant experience. I haven't spoken to my Honey yet and with the possibility of surgery not until March-April I'm still watchin' and waitin'... ;)
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Sounds like you are in good hands. I see Dr Rutka also and I like him.
Anne Marie
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Nikki ~
Thanks for the comprehensive update and the good news, within. I'm glad you're satisfied with the answers you received even if everything you've experienced wasn't immediately resolved. Apparently you can safely watch-and-wait for another 5 or 6 months, which gives you ample time to decide on your treatment, be it radiation or surgery. I wish you all the best as you move forward.
Jim
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Hey Nikki
You are joining a long crowd of southern ontario types in with the University Health Network medical crowd (Rutka/Baillie - surgical ENT types and Guha/Tymianski neurosurgeon types). I would say between Anne Marie, Calimama and myself - we all really like the practice. It is a very busy practice. Rutka writes all the conservative mgmt stuff so is well engrained in the treatment and progression (and surgical removal) of these tumors. I got an appointment with Dr. Baillie (younger side-kick of Rutka ... better looking too ;D )within a few weeks but that was likely due to the unknown nature of my condition at the time. I would suggest none of the ENTs or neurosurgeon types would encourage gamma knife but will get a referral and leave the decision to the patient. Expect a bit of a wait - but as I hear in the words you type, the condition lacks urgency.
I am back to see the ENT group in mid-December. It is a well run clinic. Interested to see how my hearing ranks this time around. My next MRI is sometime in late January (but will probablychange the date so will push it back into February - I don't expect an growth.)
Ann
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I got to see my doc finally and I spoke to Dr. Guha today. Yesterday I had an episode in the parking lot and went to the knee before I fell down. I was directly behind a car that was backing up and didn't see her. Good thing my Honey was there. Poor thing, no wonder he's always stressed. So I managed to half stumble to the curb where I sat for another 5 minutes. My 4 year old kept asking me if I hit my head, and if my head hurt. What a cutie. Trying to kiss it all away.
Dr. thinks it's a blood pressure thing, but said I should call Dr. G back right away so I did. I spoke to him this afternoon. He believes it is related to the pressure on the brain stem rather than the vestibular nerve. Either way, he's going to set me up with Dr. R and that radio oncologist. As for the 'falling down' I'm supposed to be careful, get up slower, and make sure I call him back if the symptoms escalate. This is 3 in 9 weeks. About one really bad episode every three weeks...(coinciding with hormones ??).
If things to progressively worsen, he will send me for another scan.
Hurry up and wait was much easier in the Army :P
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OOP:
Your comment "it's like someone is sitting on the back of my head and my head actually leans forward with the 'pressure'" struck home with me. It is the pain I felt in the back of my head for the first few months after GK surgery on a 15mm VS.
I also was also battling “dry eye†due to moderate dehydration, and it was very difficult to determine the main pain culprit. Half the time I wasn’t sure whether the mostly dull pain was in the cerebellum or its close neighbor the occipital lobe, or both. I finally figured it out by eliminating the cerebellum using exercises that I developed to “reset†(re-teach) the cerebellum. The dry eye had little effect after that. Bottom line, the majority of the pain and dysfunction was cerebellar, which may have caused swelling that affected the occipital cortex (possibly a reason for the light show).
Balance is controlled by the cerebellum using and interconnected system of semi-circular canals, eyesight, and the somatosensory (body awareness) system. Once the eighth cranial nerve is damaged, the AN-ear semicircular canals are out of the picture (actually, in my case I wish they were, since they just send noise, not information, to my cerebellum). You might ask, why doesn’t the other non-AN semicircular canals work, and the answer is, they are, but the cerebellum has all of it’s balance memories based on information from both L & R systems; frankly, it doesn’t know what’s going on, overworking trying, and causing arterial muscle pain.
And yes, an extremely important aspect of balance is lost with the semicircular canals, whether we are falling. If in a dark room, or if we turn our head rapidly, we lose the sight aspect of balance, with only the somatosensory system left. If we are not consciously aware of our footing, we have no idea of where we are. And if we are falling (the most likely scenario), we don’t know it until we stop. My first awareness of it was when I reached out to grab a towel in a slippery bathtub when the shower curtain hit me in the face as I turned my head. The result was a split eye bone and a red tub. The scary part was that I didn’t know I was falling until I was prone in the tub. After this, I made sure that I had either a good sighting or good footing before making any quick turns.
For your concern, it is important to rule out cerebellar pain by getting your balance back.
See Balance: Dizziness, Headaches, and Cognition...an answer! (http://Balance: Dizziness, Headaches, and Cognition...an answer!) For more information.
I hope that this helps,
Dean