Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-06-2009, 12:44 PM #11
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The Otolaringologist I saw was no help; when I told him that something in my head, around the ears, felt swollen all the time, he very curtly said, " nothing is swollen." It seems that Doctors around here are not interested in pursuing any difficult problem; it interferes with looking after their, admittedly very high patient load.
I meant to mention that I also suffer from TMJ in my left jaw a long standing problem since childhood. I think that when it gets flared up it affects my tinnitus and I do think that my RSD has made it worse.

Do you have any problems with TMJ? Also did your Otolaringologist do an MRI on your brain?

MsL
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Old 08-06-2009, 02:04 PM #12
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Hello All,
Woodsman,
I have rsd, and tbi, from separate incidents, 15 years apart.
I had the tinnitus from NSAIDs, and, tapered those off to methadone.

After the head injury, I got all kinds of weird "sensory" things.
Hearing, I got some tinnitus, hearing odd things, Not hearing things, etc.
Weird sense of smell. Sometimes I think the place is on fire, I get up and look around.
Sight, more weirdness.

It has calmed down for the most part, but I still have vertigo, and general "weird" feelings, that aren't strictly pain...

I also take aricept 5mg. in the AM, to clear the general "fogginess", to clear my thinking.
It really helps.

Good luck and good feelings to you, and all!

Pete
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Old 08-06-2009, 08:36 PM #13
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Hey woodsman you sound as though you might have meniere's disease. When the doctor says he doesnt see swelling, but you feel swelling, that is one of the symptoms.

The full feeling in your ear is from fluid build up from eating salty things, or fluid retention from medication, or it can be from allergies. The meniere's usually comes and goes, and progressively gets worse over the years. The attacks of vertigo can last from an hour to as long as a week or more. And they are no fun at all because you cannot do anything at all if it is a severe attack.

I dont spin much anymore because the darn disease has pretty much damaged the inner beyond repair. I am pretty much deaf in the left ear, and have some hearing loss in the right ear. The left ear is constantly ringing, but it does make for a good nights sleep LOL.

Just put the right ear in the pillow, and a bomb can go off and I wont wake up LOL! I do have that off balance feeling all the time though, and have to be real careful turning. If I turn to fast I can wind up on the floor, or in someones lap . And I cannot watch traffic or trains go by, oh man talk about makin someone dizzy LOL!

You might ask the doctor about meniere's disease and see what he says. He can give you something for the dizziness, and also a diuretic.

Hey hope4thebest, that speaker idea is a real good one, gonna try that one out. Will let ya know how it goes!

TY!
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Old 08-07-2009, 04:19 AM #14
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Originally Posted by Mslday View Post
I meant to mention that I also suffer from TMJ in my left jaw a long standing problem since childhood. I think that when it gets flared up it affects my tinnitus and I do think that my RSD has made it worse.

Do you have any problems with TMJ? Also did your Otolaringologist do an MRI on your brain?

MsL
Thank you for your posts.

Msl,
I know that TMJ can cause tinnitus but, I don't have that and, no, the Doctor did not do an MRI on my brain.
An MRI is an expensive procedure and MRI machines are not plentiful around here so, a hearing/understanding problem is not serious enough to warrant an MRI. Since the ear tests didn't show any problems with my ears, I assume that the problem originates in the brain as you mention in your 12:30 reply yesterday.
I have read the article from the Mayo Clinic, thanks for the link, and others on tinnitus and don't believe that my problem with understanding is caused by tinnitus. The tinnitus I can live with most of the time but, the inability to understand what people say is a real problem and removes, as RSD does already, another dimension from my social life.

Allen,
I had 2 test done on my ears; can't remember the names. They involved a pressure test and a test with different sounds at different volumes while measuring the nerve conduction time. Nothing was said about Menieres.
Sleeping on my right side could possibly be a solution but, I can't lie on my right side; too painful.

Pete,
I do have some strange things happening. My peripheral vision picks up sudden quick movement but, when I turn and look, nothing's there. Strange odours and, not so severe and not so often now, explosions in my head.
Those explosions are loud enough and strong enough to make my head jump off the pillow yet, there is no sound.
I also have short periods, when I sing, when I seem to black out. Can't read the words on the sheet music and can't remember even when I know the lyrics. Same with conversation; can't think of even the simplest words or remember the name of a person I have known for years.
Fortunately I am well past embarrassment and simply tell the truth with a laugh; "I can't remember your name."

Like so many other things that RSD has changed in my life, I will just have to live with this problem.

Thank you all for your input and have a day of peace and joy.

woodsman
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Old 08-07-2009, 12:52 PM #15
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Quote:
I know that TMJ can cause tinnitus but, I don't have that and, no, the Doctor did not do an MRI on my brain.
An MRI is an expensive procedure and MRI machines are not plentiful around here so, a hearing/understanding problem is not serious enough to warrant an MRI.
The reason I mentioned the MRI was because my doctors ordered one to rule out such things as a as a brain tumor, I think it was important part of the diagnosis and yes here too we have big line ups for them. It was not an unnecessary test.

Sounds like you have some serious symptoms that should be investigated. I wouldn't chalk it all up to RSD.

MsL
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Old 08-08-2009, 04:01 AM #16
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Hi Msl.

You are right, my problem with understanding speech and the tinnitus may not be related to RSD. On the other hand, this has been going on for too long to be a brain tumor. I would think that, after about 18 years, a tumor would have grown large enough to replace all of my brain; maybe it has, eh?

Good thought though. Thanks Msl

Have a good one.
woodsman
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Old 08-08-2009, 08:21 AM #17
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 08-08-2009, 11:36 AM #18
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Hi Woodsman,

I wasn't saying that it is a brain tumour , just that that is one of the many things that they rule out. Obviously I don't know your history but it sounded like your Otolaringologist was dismissive of you and your complaints. Personally I'd go for a second opinion.

When I was sent home from the emergency room with no answers and no help the tinnitus was still getting worse and I got really scared. The doctors who examined me in emerg just weren't connecting the dots and I was only seen by a resident ENT doctor who basically shrugged his shoulders and treated me for a migraine, I knew it was not a migraine.

I turned right around and went and went directly to the ENT department. I did a sit-in until the head of the department would see me. He ultimately and they got me the right help.

I hope you do find out what is behind this and get the right treatment.

MsL
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Old 08-08-2009, 09:14 PM #19
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We'll be prayin for ya here too bro, the inner ear has a bunch of things that can go wrong and can be real complicated. They may never get to the root of the problems.
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Old 08-13-2009, 04:38 AM #20
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Default thanks MsL

[QUOTE=Mslday;549193]Hi Woodsman,

I wasn't saying that it is a brain tumour , just that that is one of the many things that they rule out. Obviously I don't know your history but it sounded like your Otolaringologist was dismissive of you and your complaints. Personally I'd go for a second opinion.

If I lived in the big city, I probably would go for that second opinion but, as it is, I would have to travel about 200 miles to get to a good ENT. I have lived with this for a long time and can continue to do so for the next 45 years, unless it gets much worse.
Thanks again.
woodsman
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