Balance issues?

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Balance issues?

Postby Rachael » Mon Jun 25, 2012 4:58 pm

Managed to fall over in town centre today, didn't even realise it was happening until I was inches from the pavement! Really hoping I didn't blackout but as don't remember how it happened, can't say for sure. Haven't had anything like that happen for a couple of years, maybe I was getting complacent! Bad thing was, not one person stopped to ask if I was ok. Fortunately just cuts & bruises but bit of a shock to the system. Not sure if should go to doctor or just hope its a one-off, any advice welcome, think maybe just need reassurance!
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Re: Balance issues?

Postby karenb » Mon Jun 25, 2012 5:39 pm

Racheal,

I am so sorry to hear about your fall! Thank heavens you weren't hurt!

Since this hasn't happened in awhile, it may be that you've just gotten complacent and need to be more careful.

I started falling about 5 years ago, but most of mine are "near-misses" - I manage to grab onto something before I actually hit the floor or wall.

You didn't indicate whether you hit your head or not - if you did, you should probably be checked over by a doctor. The same applies if you're not feeling back to normal within a couple of days...

I'm so sorry to hear that nobody noticed or tried to help you. That is such a sad commentary on the type of world we live in these days, and I'm sorry you experienced that.

Karen
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Re: Balance issues?

Postby drummergrl » Tue Jun 26, 2012 10:57 am

Oh no, I'm sorry to hear that! It's especially unfortunate that those around you were so indifferent. While its hard to have these conditions, I also feel blessed that it makes us more empathetic and cognizant of other people's pain.

I agree with Karen- if your head hit the ground, that warrants an office visit to be sure you're all right. Blurred vision, feeling dizzy, etc. also indicates a need to be seen. I've spent the last few months falling or having "near misses" (like that term, Karen!) myself and my doctors and physical therapist gave me those guidelines. How are you feeling today? I hope it is just a scenario of complacency, like you said. Hope you're doing all right and not too banged up!
CM, SM, Scoliosis
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Re: Balance issues?

Postby Rachael » Fri Jun 29, 2012 7:17 pm

Thanks guys, managed to keep head off the floor, but have had really stiff neck for past few days which is why haven't been here to reply. Had decompression 10 years ago (it did slow things down loads) but do get occasional flare-up when I do something silly like falling over!! Been really stiff & achy (multi-coloured bruises too!!) but just glad no serious damage done. My work doesn't get it but tbh I don't care ;-) x having much better day today, gotta work sunday now to make up my hours though :-( hope everyones having lovely weekend xx
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Re: Balance issues?

Postby karenb » Fri Jun 29, 2012 10:33 pm

Rachael,

I did not realize you had had decompression surgery - had I realized that was the case, the first words out of my mouth would have been "get to the doctor". I, personally, have not had decompression surgery, but many of my friends who have have told me that any type of fall - even if you don't hit your head - can do some serious damage to the surgery and to the CSF fluid pressures.

Please keep us posted about how you're doing.

Karen
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Re: Balance issues?

Postby Rachael » Sat Jun 30, 2012 3:30 am

I thought about going to doctor but as they know nothing about cm/sm , they just send me to my old neurologist & (as he also knows nothing about it) I just get sent for yet another mri, which always comes back as no change! Kinda frustrating when I know I'm getting new symptoms, but don't really get any choice about it (nhs). Don't get me wrong though, if it wasn't for nhs I'd probably still be waiting for diagnosis or could be a lot worse than I am - had very sudden onset of symptoms & they got worse over a couple weeks. That was over 10 years ago now so don't worry too much just hate when little things set me back. Just when I start to feel normal again :roll:
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Re: Balance issues?

Postby karenb » Sat Jun 30, 2012 3:15 pm

Rachael,

I definitely understand what you're saying - just as you start to feel "normal", something new hits you or sets you back... it's pretty frustrating, isn't it? I definitely understand the "run-around" the MDs give you, and I don't think anybody wants yet another MRI...

When I last fell (and hit my head), the ER sent me home with some strong muscle relaxants (which really did help with the neck and upper body pain) and instructions to step up my pain meds temporarily - that helped with the immediate pain. (As a plus, I was too looped to care for a few days, which also helped reduce the pain associated with muscle tension!) They also sent me to the neurologist, who did an MRI but didn't allow the radiologist to read it and also didn't read it himself...

Hang in there!

(((gentle hugs)))

Karen
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Re: Balance issues?

Postby twins617 » Sun Jul 08, 2012 5:36 pm

I am so sorry, but on the other hand glad to hear others on here have the same problems. I'm afraid I'd had a stroke, or maybe I have? It's gotten so bad I'm having to walk w/a cane cause I'm falling. I just woke up one morning dizzy/off balanced, my husband had to help me out of the bed. I now have to sleep propped up, I can't lay flat. Also, alot of doctors won't take my insurance, BC/BS of TN. I feel like I'm stuck between a rock & a hard place. I don't wanna go back to the doctor that did my first depression surgery cause I don't think it was don't right, but that's just my opinion. My poor husband won't let me do anything around the house. My MD found me a doctor close to Memphis that will take, so I'm hoping he can help me. Again, I'm very sorry for what U R going thru, but I do understand. If at anytime U just wanna chat, I'm here....always. U take care & be very careful.
My prayers R w/u.
Vickie
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Re: Balance issues?

Postby twins617 » Tue Jul 10, 2012 11:57 pm

I get so mad at these doctors I could scream. What's wrong w/them? Do they think we are lying. I hurt everyday, just ya'll do. I fell again today & cut my elbow. It scares my husband to death when I fall. What R we gonna do? Where's the answer? I at the point that I cry alot, I get so depressed. All they wanna do is give me drugs. I'm so tired of taking pills. I'm getting worse as days go by. I don't wanna go thru that surgery again, but if it'll help, I'm ready. I finally got an appt. a week earlier, so maybe I won't kill myself by falling, but being off balance is driving me nuts. These doctors were suppose to have gone to medical school to learn how to help people, not just throw us away. And these insurance companies, don't get me started on them. We have to drive 2 hrs. just to see this doctor & if he can't help me, I'm afraid I'll have a break down there in his office. I'm so sorry I just need to vent. My daughter has the same thing & she gets these headaches also, so far it's only the headaches. I hope everyone has a good nite sleep & a new day tomorrow. Thanks again for listening to me. Love all ya'll.
Vickie
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Re: Balance issues?

Postby reedy » Wed Jul 11, 2012 6:57 am

Hi Rachael,
Very sorry to hear about your tumble - especially that no one stopped to see if you were OK.

I've had that happen in London...took a fall in front of someone's house, cut my face on their fence and my glasses went flying....some guy going in to visit the house just stepped over me lying prone on the sidewalk (pavement), like I was a bit of fallen tree or something. Luckily the owner at the door was a bit more sympathetic and brought me tissues for my head wound.

Other times though people have been very kind. I recall an elderly gentleman trying to pick me up off the street after a tumble....it made me hurry to get myself collected, as I didn't want two damaged people lying in a heap on the sidewalk!

I often wear a leather jacket, which helps a little to keep the scrapes down if you fall. (My falls are usually because of foot-drop, not balance per se, though with my decreased proprioception, my balance has become pretty bad.)
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Re: Balance issues?

Postby Tanya2 » Tue Jul 17, 2012 10:15 pm

I too am sorry to hear that noone stopped to help. It is especially nasty of them, I have been there and really feel for you. I am with the advice to step up the muscle relaxants and pain meds until you feel better. I hope it is soon.
Tanya Ferguson BSc. MET
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Re: Balance issues?

Postby tennesseewalker » Sat Aug 11, 2012 4:46 pm

Unless you're still experiencing those symptoms, you're likely to hear your doctor say "well, it's resolved on its own, so just come back if it happens again." It's when you lose consiousness or the use of arms or legs that they worry about you.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Balance issues?

Postby alpowers01 » Mon Aug 13, 2012 3:42 pm

I've had CM1/SM for at least 40 years (now, 73 years-old). Over the past ten years, my feet and legs have become progressively numb. Currently, I have very little feedback from the base of my feet when I am standing. This feedback is crucial to balance. As a result, I find myself using visual clues to maintain balance. If I'm placed in the dark, you can knock me over with a feather.

More recently, I find that I stagger every time I turn my head while walking. This is new and I attribute tit to increasing neurological deterioration resulting from the Chiari, itself... not the syrinx, because it's accompanied by a light-headed sensation, as well. I fail to see how the syrinx could do this.

I mention these issues only to inform others. Perhaps, by sharing, we can help each other cope and even find solutions.
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Re: Balance issues?

Postby razzle » Mon Aug 13, 2012 4:18 pm

alpowers01 do oyu take meds and do you see NS on a reg basis ..
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Balance issues?

Postby alpowers01 » Tue Aug 14, 2012 12:10 pm

Razzle: No, I don't take any meds. I did try gabapentin for awhile and, for me, it was useless. I do see my n/s, as needed. There used to be 2-3 years between checkups. Now, it's more like every 6 mos, or less. I'm at the point of considering a PFD/Duraplasty and will be discussing this with him in Sept.
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