Important warning!

monkeygirl · 06-01-2002, 01:02 AM

Hi Everyone! I really want to share with all you guys something that is so very important to all of us, including caregivers. Having been a t6 para for 19yrs, it really wasn't until we got a computer about a year ago, and I found Wise, nurses and you guys, that I really started taking an interest in my health to the extent that I do now.

After running into problems aging with sci, I realize I didn't do many things that I should have, so I'm paying for them dearly. The biggest thing I believe was not getting regular check-ups, x-rays, mri's, and KEEPING copies of them, for future reference. Also, closely keeping track of any changes in my body, both physically and mentally no matter how insignificant it may seem at the time. Getting to the Uroligist on a regular basis, having all the tests done, KEEPING copies again! Find a doctor who has experience with SCI or what-ever your desire, I've had GP for 12yrs that dosen't know squat about complications a sci could have, all she seems to know is what I tell her. I should have at least seen a specialist in sci once a year for a look-see.

I should have demanded that my doctor look into everything that I brought to her attention, not just fluffing it off, or giving me a pill. I should have demanded x-rays, mri's, blood tests, sensory testing etc, etc. I should have re-evaluated all the drugs I took on a regular basis, do I still need them,do I need so many?, Is there something better, something less evasive?

I should have exercized more, kept my shoulders, arms, wrists, etc in good shape, my heart, my lungs, knowing that they are my independance, that I must keep as long as possible. I should have ate properly, took vitamens, drank more water, cathed more frequently, keeping the plumbing working ( I now have a bum kidney)

The reason I posted this is because I had my first mri in 19yrs, and I have syringomyelia, a synrix that extends from t7 into my brainstem, for which I now need major surgery. I know that had I been on top of things I wouldn't be in this spot right now, the synrix could have been there for years, it is so big my urologist can't believe I can even swallow. I suggest everyone look up syringomyelia as we are prone to it.

I guess I just wanted to give a little wake-up call to everyone here, that we all have to be diligent in preserving our health and well being, we have so much more at stake than others out there. We can't count on anyone to look after our health, nor should we. We must be pro-active and take complete control of who we are, what we need to do, and do it!

marmalady · 06-01-2002, 03:00 AM

Amen, Monkeygirl; your advice is excellent. I'm sorry you're having problems now, and hope everything is going to be okay for you.

This advice applies to everybody, as well, and if I might throw in a little 'plug' for the caregivers here, it's also especially important for us to watch our own health concerns, which can so easily get overlooked in the day to day busyness of caregiving. If we crash, we can't be caregivers!!!

The day has come when all of us need to be more responsible for our own health care concerns. Gone are the days of Marcus Welby, the kind, gentle white-haired doctor who we looked to for all aspects of our health care. Medicine is so specialized today, that internists and GP's can't be expected to know everything about everything, and as we've all experienced, even the specialists don't know a lot about SCI medical conditions, which have created yet another sub-specialty just for treating SCI specific conditions! IE, a urologist who specializes in SCI bladder issues.

Keeping copies of all tests, as well a record of all medications, even antibiotics and dates prescribed, is important; everyone has a right to copies of all testing done, even copies of x-rays and MRI/CAT scans, etc. It's prudent to ask for them at the time of the testing, rather than waiting, while the hospital/clinic has them in their 'active' files. Once they disappear into the arcane filing systems, sometimes it's hard to get them dug out again!

_____________
Tough times don't last - tough people do.

shacha · 06-01-2002, 05:02 AM

Hope every thing goes well will say a prayer for you.

good adivce, there are a couple of books that have been a huge help, kind of costly but it s your life. they are a DRUG GUIDE FOR NURSES it will help you with medications and mixing them, we had an episode and all the medication came from the same dr. didnt know what was happening but i looked up the new one and it said you cant mix it with two of hs old med. the other is a MEDICAL DICITIONARY be caue it helps you under stand what the dr is saying when e uses those $5.00 words a PDR is good but has too much info i think. you an get these at any big book stor

ptamom · 06-01-2002, 06:18 AM

Monkeygirl,

I am afraid that I have been neglecting my health as well, for the past 13 years, and since I have found this site, am inspired to take my health more seriously. I haven't been to see my SCI doctor in "I don't know how long". When you say you have kept records of X-rays etc. Do you mean that you have kept copies of the reports or have you been able to keep the x-rays themselves? I had my x-rays once, but the hospital called after a couple of months and asked for them back. Like you said, once the x-rays are a few years old, you can't get them any more. I think that they are destroyed. Just wondering what you do? Thanks.

ptamom · 06-01-2002, 06:20 AM

P. S.

I wish you well with your upcoming ordeal. Please keep us posted on how things go for you.

SCI-Nurse · 06-01-2002, 08:32 AM

In the current healthcare climate in the United States, at least, this warning to take responsibility for your own health is something EVERYONE (temporarily able-bodied or not) should attend to. If you don't take care of yourself, no one else will be able to take care of you.

On the other hand, Monkeygirl, there really is no way to prevent syringomyelia from happening, it is a common occurrence after a spinal cord injury. It would have been nice to catch it earlier when it was smaller. But don't indulge in too much guilt, that would definitely be counterproductive.

I think it's really admirable on your part to use your painful experience to try to teach you colleagues to take care of themselves. Good work.

RAB

shacha · 06-01-2002, 10:22 AM

we get our dr. to request copies of the film then she turns them over to us, so we have copies of every picture from the last 8 years it has been a huge help and we also get her to give us copies of the written reports. I keep every thing (except film) in 3 ring binders. copies of bills, that helps recall dates of visits , and copies of perscriptions incase there is ever a question about doses or what was actually ordered. i also rite notes when we get home on the high points so we dont forget or screw up. it seems like a lot but it has kept our ft out of the fire more than once (especlly when dealing with insurance)

Jeff · 06-01-2002, 10:29 AM

Thanks for the warning. Do you have any loss of function from the syrinx? Most people usually get MRIs when problems arise. I was hurt in 1980 and have never had an MRI. Or maybe my SCI doc just doesn't use them for routine evaluation. I wonder if we all should have them done to catch a syrinx early...

~See you at the SCIWire-used-to-be-paralyzed Reunion

~

Wise Young · 06-01-2002, 02:44 PM

MG, I am sorry to hear about the syrinx. What kind of surgery is being planned... I will try to gather up as much statistics as possible concerning the different procedures. Wise.

Chris Chappell · 06-01-2002, 04:08 PM

MG. If you're looking for a great neurosurgeon who has tremendous experience with syring...(sp) call Dr. Scott Falci, Craig Hospital, CO 303-789-8000.

Onward and Upward!

06-01-2002, 01:02 AM	#1
monkeygirl Senior Member Join Date: Jul 2001 Location: BC, Canada Posts: 1,972	Important warning! Hi Everyone! I really want to share with all you guys something that is so very important to all of us, including caregivers. Having been a t6 para for 19yrs, it really wasn't until we got a computer about a year ago, and I found Wise, nurses and you guys, that I really started taking an interest in my health to the extent that I do now. After running into problems aging with sci, I realize I didn't do many things that I should have, so I'm paying for them dearly. The biggest thing I believe was not getting regular check-ups, x-rays, mri's, and KEEPING copies of them, for future reference. Also, closely keeping track of any changes in my body, both physically and mentally no matter how insignificant it may seem at the time. Getting to the Uroligist on a regular basis, having all the tests done, KEEPING copies again! Find a doctor who has experience with SCI or what-ever your desire, I've had GP for 12yrs that dosen't know squat about complications a sci could have, all she seems to know is what I tell her. I should have at least seen a specialist in sci once a year for a look-see. I should have demanded that my doctor look into everything that I brought to her attention, not just fluffing it off, or giving me a pill. I should have demanded x-rays, mri's, blood tests, sensory testing etc, etc. I should have re-evaluated all the drugs I took on a regular basis, do I still need them,do I need so many?, Is there something better, something less evasive? I should have exercized more, kept my shoulders, arms, wrists, etc in good shape, my heart, my lungs, knowing that they are my independance, that I must keep as long as possible. I should have ate properly, took vitamens, drank more water, cathed more frequently, keeping the plumbing working ( I now have a bum kidney) The reason I posted this is because I had my first mri in 19yrs, and I have syringomyelia, a synrix that extends from t7 into my brainstem, for which I now need major surgery. I know that had I been on top of things I wouldn't be in this spot right now, the synrix could have been there for years, it is so big my urologist can't believe I can even swallow. I suggest everyone look up syringomyelia as we are prone to it. I guess I just wanted to give a little wake-up call to everyone here, that we all have to be diligent in preserving our health and well being, we have so much more at stake than others out there. We can't count on anyone to look after our health, nor should we. We must be pro-active and take complete control of who we are, what we need to do, and do it!

06-01-2002, 05:02 AM	#3
shacha Senior Member Join Date: Feb 2002 Location: bonita springs, fl Posts: 147	thanks Monkeygirl Hope every thing goes well will say a prayer for you. good adivce, there are a couple of books that have been a huge help, kind of costly but it s your life. they are a DRUG GUIDE FOR NURSES it will help you with medications and mixing them, we had an episode and all the medication came from the same dr. didnt know what was happening but i looked up the new one and it said you cant mix it with two of hs old med. the other is a MEDICAL DICITIONARY be caue it helps you under stand what the dr is saying when e uses those $5.00 words a PDR is good but has too much info i think. you an get these at any big book stor

06-01-2002, 08:32 AM	#6
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,514	Worthwhile Warning In the current healthcare climate in the United States, at least, this warning to take responsibility for your own health is something EVERYONE (temporarily able-bodied or not) should attend to. If you don't take care of yourself, no one else will be able to take care of you. On the other hand, Monkeygirl, there really is no way to prevent syringomyelia from happening, it is a common occurrence after a spinal cord injury. It would have been nice to catch it earlier when it was smaller. But don't indulge in too much guilt, that would definitely be counterproductive. I think it's really admirable on your part to use your painful experience to try to teach you colleagues to take care of themselves. Good work. RAB

06-01-2002, 10:22 AM	#7
shacha Senior Member Join Date: Feb 2002 Location: bonita springs, fl Posts: 147	phantom we get our dr. to request copies of the film then she turns them over to us, so we have copies of every picture from the last 8 years it has been a huge help and we also get her to give us copies of the written reports. I keep every thing (except film) in 3 ring binders. copies of bills, that helps recall dates of visits , and copies of perscriptions incase there is ever a question about doses or what was actually ordered. i also rite notes when we get home on the high points so we dont forget or screw up. it seems like a lot but it has kept our ft out of the fire more than once (especlly when dealing with insurance)

06-01-2002, 10:29 AM	#8
Jeff Senior Member Join Date: Jul 2001 Location: North Brunswick, NJ, USA Posts: 6,858	MG Thanks for the warning. Do you have any loss of function from the syrinx? Most people usually get MRIs when problems arise. I was hurt in 1980 and have never had an MRI. Or maybe my SCI doc just doesn't use them for routine evaluation. I wonder if we all should have them done to catch a syrinx early... ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

06-01-2002, 03:00 AM	#2
marmalady Senior Member Join Date: Aug 2001 Posts: 3,988	Amen, Monkeygirl; your advice is excellent. I'm sorry you're having problems now, and hope everything is going to be okay for you. This advice applies to everybody, as well, and if I might throw in a little 'plug' for the caregivers here, it's also especially important for us to watch our own health concerns, which can so easily get overlooked in the day to day busyness of caregiving. If we crash, we can't be caregivers!!! The day has come when all of us need to be more responsible for our own health care concerns. Gone are the days of Marcus Welby, the kind, gentle white-haired doctor who we looked to for all aspects of our health care. Medicine is so specialized today, that internists and GP's can't be expected to know everything about everything, and as we've all experienced, even the specialists don't know a lot about SCI medical conditions, which have created yet another sub-specialty just for treating SCI specific conditions! IE, a urologist who specializes in SCI bladder issues. Keeping copies of all tests, as well a record of all medications, even antibiotics and dates prescribed, is important; everyone has a right to copies of all testing done, even copies of x-rays and MRI/CAT scans, etc. It's prudent to ask for them at the time of the testing, rather than waiting, while the hospital/clinic has them in their 'active' files. Once they disappear into the arcane filing systems, sometimes it's hard to get them dug out again! _____________ Tough times don't last - tough people do.

06-01-2002, 06:18 AM	#4
ptamom Member Join Date: May 2002 Location: Sault Ste. Marie, Ontario Posts: 44	Monkeygirl, I am afraid that I have been neglecting my health as well, for the past 13 years, and since I have found this site, am inspired to take my health more seriously. I haven't been to see my SCI doctor in "I don't know how long". When you say you have kept records of X-rays etc. Do you mean that you have kept copies of the reports or have you been able to keep the x-rays themselves? I had my x-rays once, but the hospital called after a couple of months and asked for them back. Like you said, once the x-rays are a few years old, you can't get them any more. I think that they are destroyed. Just wondering what you do? Thanks.

06-01-2002, 06:20 AM	#5
ptamom Member Join Date: May 2002 Location: Sault Ste. Marie, Ontario Posts: 44	P. S. I wish you well with your upcoming ordeal. Please keep us posted on how things go for you.

06-01-2002, 02:44 PM	#9
Wise Young Administrator Join Date: Jul 2001 Location: New Brunswick, NJ, USA Posts: 37,988	MG, I am sorry to hear about the syrinx. What kind of surgery is being planned... I will try to gather up as much statistics as possible concerning the different procedures. Wise.

06-01-2002, 04:08 PM	#10
Chris Chappell Senior Member Join Date: Jul 2001 Location: Denver, CO Posts: 7,035	Good luck MG. If you're looking for a great neurosurgeon who has tremendous experience with syring...(sp) call Dr. Scott Falci, Craig Hospital, CO 303-789-8000. Onward and Upward!

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