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Old 06-28-2012, 09:52 AM #1
Kitt Kitt is offline
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I have a cousin who has acrachnoiditis after having back surgery quite a few years ago. It is not a pretty picture as she has suffered severely ever since.

http://www.webmd.com/pain-management...-arachnoiditis

Another person married to another cousin had that dye thing done. He died. I would be very wary of any of it.

And the lumber puncture seems to be to find out if a person has an autoimmune disease, etc.
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Old 06-28-2012, 10:58 AM #2
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Quote:
Originally Posted by Kitt View Post
I have a cousin who has acrachnoiditis after having back surgery quite a few years ago. It is not a pretty picture as she has suffered severely ever since.

http://www.webmd.com/pain-management...-arachnoiditis

Another person married to another cousin had that dye thing done. He died. I would be very wary of any of it.

And the lumber puncture seems to be to find out if a person has an autoimmune disease, etc.

After reading the description of Arachnoiditis......read like I was reading about myself.

All symptoms..... except do not have the uncontrollable twitching.

Causes......had dye used in Myelogram,
epidural steroid injections, nerve compression.
Spinal stenosis still bad; but lamina removed from worst area to allow spinal cord more space.
Many spinal procedures,
Also had lumbar spinal fusion as well.

Yikes....Have to wonder. Never been diagnosed with Arachnoiditis, but am under Pain Management with pain meds, including Oxycontin, Oxydodone, Vallium daily, and in order to sleep or even lay down without terrible pain, use Ambien CR every evening.


Gerry
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Old 06-28-2012, 01:09 PM #3
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but dont u think it is a necessary diagnostic step?
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Old 06-28-2012, 02:16 PM #4
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Quote:
Originally Posted by boiler1993 View Post
but dont u think it is a necessary diagnostic step?
Not unless there is something to be gained that justifies the risk and there is no safer way of determining it.

There will always be the argument of whether doctors do too much testing or not enough. MrsD answered the question of why to do it (i.e. what it might reveal). I answered the question why not to do it. I'm not trying to tell anyone not to do it; I'm just pointing out a risk that I believe is downplayed/overlooked. The decision is between doctor and patient, but I believe that decision should be an informed one. The days of patient acquiescence are over.

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Old 06-28-2012, 03:02 PM #5
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I was diagnosed with idiopathic PN a year ago. I've seen 2 neurologists, an ER doctor, a rheumatologist, my PCP (several times) and not one of them has suggested a spinal tap.

I suppose that my symptoms may be different, but I just thought I would chime in. I'm actually relieved that none of the doctors have suggested I have one.
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Old 06-28-2012, 04:01 PM #6
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Default Hi Boiler

I wouldn't do it, unless there was no other way to determine your condition. I did turn down two invasive tests. Lost a doctor over it too. I didn't like the risk, as I was already hurting. Didn't do EMG, and a myleogram, and no CT scan with dye either. I had one before and had a reaction to the dye used. I know alot of others may say go ahead and do the diagnosis, but for myself, I turn down pain at all costs. I survived and had surgery without those tests. No matter what you decide, look up all risks and benefits. I wish you all the best. ginnie
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Old 06-28-2012, 06:48 PM #7
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thank you guys for the thoughts my neuro just recommended me to a neuromuscular specialist to look further into genetic disorders/CMT possibilities because on my family history. I should get my new MRI results tomorrow and have a VEP tomorrow both which i suspect will be normal...thanks again! (also i still notice that heat tends to bring on tingles in my legs? it was 98 degrees today and i noticed it several times)
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Old 06-28-2012, 06:52 PM #8
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Quote:
Originally Posted by boiler1993 View Post
thank you guys for the thoughts my neuro just recommended me to a neuromuscular specialist to look further into genetic disorders/CMT possibilities because on my family history. I should get my new MRI results tomorrow and have a VEP tomorrow both which i suspect will be normal...thanks again! (also i still notice that heat tends to bring on tingles in my legs? it was 98 degrees today and i noticed it several times)
Well, if they suspect CMT, there is really no need for a spinal tap! I hv the tingles in my legs regardless of the weather, but the pain is much worse if I am cold.
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Old 07-01-2012, 03:45 PM #9
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got my MRI of lumbar and thoracic spine back - of course normal- now waiting for VEP results...anyone know what the test looks like if it is abnormal? just curious thanks!
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