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Old 10-17-2007, 09:11 AM   #1
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Smile New here, questions

Hi, I am new here. I suffered from an accident involving my horse. I broke my neck at C4/5 am am tetraplegic (I believe quadrplegic in the USA). I have terrible pain in my tailbone and because I must sit in a wheelchair can not get much relief. When I get into bed, I am only comfortable on my right side and the skin there is turning rough and brown. I am so scared of pressure sores. My Dr gives me each month #180 10 mg Methadone (2 tabs 3x/daily) and #150/200 15mgs Oxycodone Hydrochloride Instant Release pills every month. I am so frustrated with my injury and everything that comes with (z.B. pain).
Any non-medical advices you can give to me. I think much of th medications use seperate names between the US and Europe. There was also a gel my therapist rubbed onto my skin that worked nicely. It's v. mintysmelling.
Thanks and Greetings from Germany! Ana Maria

Last edited by AnaDE17; 10-17-2007 at 09:11 AM.

 
Old 10-17-2007, 10:22 AM   #2
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Re: New here, questions

Hello Ana and Welcome to the Boards!,

I am not sure exactly what you are asking in regards to your health, are you wondering how to get comfortable with your dissablity's? or do you have questions on your medications. Either way you are in the right place. I have my own issues that arise from multiple back surgery's and chronic pain that is treated with many opiate pain medications and I find that many of my questions are answered by folks on this great board. I wish you the best and hope that all works out for you. Dissability can be such a life altering experience for all of us no matter how large or small a problem that we may have. God bless you and I wish you the best of luck, Feel free to chat our little ears off as we are all hear to support each other.

God Bless from the U.S.A,

Jason

 
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Old 10-17-2007, 11:29 AM   #3
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Re: New here, questions

I have a buddy who had polio as a kid and is now a quadraplegic. He's also in a chair. For his behind, he uses a fairly large cushion to sit on. I've never seen him sit directly on the chair's seat. I believe he gets foam cushions from medical supply stores, and changes them out fairly frequently.

Best of Luck to you!

steve

 
Old 10-17-2007, 11:52 AM   #4
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Re: New here, questions

Welcome!
This is a great place to get questions answered and just to vent. Everyone is very supportive and we know how you're feeling.

I'm so sorry about your injury. I think the worst thing for all of us is accepting that we have a life-long chronic condition. I know I still wake up in the morning just hoping that maybe, just maybe, all the pain would be miraculously gone.

Please, keep posting and take care, Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

 
Old 10-17-2007, 02:26 PM   #5
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Re: New here, questions

I guess I'am not very clear because I'm not very sure myself what my questions are I have read this forum for some time and (I'm ashamed to say or think this) sometimes I wish I could trade places with any one of you just to have my liberty and autonomy returned to me. I am 23 years old and afraid of putting all this medication into my body. I was taking a holistic approach until the pain got to the point of hyperreflexia and I was crying each night to my mum who couldn't do anything to help me. Luckily, we have a very good health system here and my doctor who does physiomedicine recommended me to try these drugs to remedy the problem.
I guess I have no point at ths time. I look forward to further discussions.
Greetingx, Ana

 
Old 10-17-2007, 02:29 PM   #6
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Re: New here, questions

As for my wheelchair, I have a specialised cushion with cells filled with air to prevent skin breakdown. Also, support for my back to help my seatingpostioning and lateral support. I can never sit on a chair or airplaneseat without this cushion. -Ana

 
Old 10-18-2007, 08:14 AM   #7
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Re: New here, questions

May I ask if you have the use of either or both hands? You mentioned that originally you were trying a holistic approach to pain management. This interested me as I also tried and still do as far as diet is concerned. Do the docs offer you any hope of future procedures which may become available?
You told us the medications you were taking for pain. Are they working?
I think we all could learn something from you regarding our own conditions--As you said, most of us are lucky and don't realize it until we hear from someone such as yourself--Take care--Roger

 
Old 10-19-2007, 07:31 AM   #8
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skych HB Userskych HB User
Re: New here, questions

Hello Ana,

Welcome to the board!!

It is just amazing how our lives can change in just an instant. We all have different ways of processing things. It seems that we all struggle at times with the way things are.
Our pain and are injuries on this board can be varied in their degree but the fact is that they are OURS on a personal level and that ...well makes them and the feelings and all that comes from them the same.

Many people that I know here in my local area have tried things from meds to injections to holistic medice to accupuncture!!! Some things work for some people and some don't. I think that it is a matter of just trying to find what helps you.

I have losts of issues, with my neck and mid back and my left arm is 14 % dissabled (with my mind too..LOL) and I am constantly working on trying to stay in the moment and lead a spiritual path of life.

You and I share the love of horses! I can not ride at this time because of a neck injury from a car accident and prior to that I could not ride for the last 3 years because of a workers comp injury that caused me to have 4 surgeries on my arm. I just finished up the workers comp thing and was very excited that I may get back to doing things like riding, painting, photography, but then this car accident happened and here we are.

So now I work on finding joy in other ways because it really helps me to not focus on my situation as much. I may not be able to ride or paint horses at this time and it is hard to photograph them but I can pet them and smell them and enjoy them in other ways. Sometimes just taking a ride in the car to see all the beautiful scenery is enough to lift my spirits if I am down.

I am a student at the age of 37 and I enjoy school and learning. I always wanted to go back to school but could never get up the courage to do it. It was the work accident that gavve me the push to find another path. You are so very yong and have so many opportunities that will be presented to you as you grow with your dissabilities and pain and as a young woman.

Medicine is growing and changing all the time and I have faith that you will find the things that work for you. Being honest with your docs and being able to connect and feel comfortable with them is a big help.

Keep posting here!!! You will find so many friends and answers. The people on this board have been a great help to me is so many ways and on so many different levels that words cannot describe it.

Chrissy

 
Old 10-19-2007, 07:41 AM   #9
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Re: New here, questions

Hi- I have no finger movement. I can shrug my shoulders and have strong bicepts but no tricepts nor wrist control. It's a bit like having mittens or boxinggloves on because my fingers are tightly curled under.
Yes, I do get a bit irritated when I see people complaining that their 5k run has exacerbated their pain now they must phone the Dr to beg for more ___ (insert narcotic of choice). I deal with lack of control AND pain 99.9 percent of people can never begin to imagine. Please don't flame saying your Dr has said your latest MRIs or CTScans indicate your back is that of a 210 year old miner (or whatever). Just be grateful you're still able to DO things, whether or not you're in pain or not. -Ana

 
Old 10-19-2007, 07:48 AM   #10
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Re: New here, questions

Quote:
Originally Posted by AnaDE17 View Post
Hi, I am new here. I suffered from an accident involving my horse. I broke my neck at C4/5 am am tetraplegic (I believe quadrplegic in the USA). I have terrible pain in my tailbone and because I must sit in a wheelchair can not get much relief. When I get into bed, I am only comfortable on my right side and the skin there is turning rough and brown. I am so scared of pressure sores. My Dr gives me each month #180 10 mg Methadone (2 tabs 3x/daily) and #150/200 15mgs Oxycodone Hydrochloride Instant Release pills every month. I am so frustrated with my injury and everything that comes with (z.B. pain).
Any non-medical advices you can give to me. I think much of th medications use seperate names between the US and Europe. There was also a gel my therapist rubbed onto my skin that worked nicely. It's v. mintysmelling.
Thanks and Greetings from Germany! Ana Maria
Hello Ana...Have you ever tried sitting on what is called a "Donut Cushion"?? There is a hole in the center which helps keep the pressure off your tailbone...I broke my tailbone when I was 16, and it flared up after I had both kids. MISERABLE, to say the very least. It really helped me to sit on that cushion.

Something else I did was buy a Tempurpedic mattress set. It has been wonderful. Your body just fits right into it. They are expensive and I don't even know if they have them in Germany or not, but its worth a try if you can get them there and can afford one.

Sorry to hear about your accident too. I love horses, but have always been afraid of them...My Dad instilled the fear of God in me when he caught me on my neighbors horse one day. He proceeded to tell me the horse could throw me and what all might happen....but, to this very day, I love to watch them...I think they are beautiful..
Take care and hope you can find some relief soon...
Mammy

 
Old 10-19-2007, 08:12 AM   #11
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Re: New here, questions

Hi, and thank you Everyone is just so lovely! yes, I too have the swedish mattress. The donut cushion, my Dr says, is not a good solution. While my coccyx would be free, it would create an increase of pressurein the surrounding area rather than having it spread evenly over this plane/surface. I can't express what I mean v. well in englisch. I hope you understand what I mean.

 
Old 10-19-2007, 11:18 AM   #12
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whitfield HB User
Re: New here, questions

Quote:
Originally Posted by AnaDE17 View Post
Hi- I have no finger movement. I can shrug my shoulders and have strong bicepts but no tricepts nor wrist control. It's a bit like having mittens or boxinggloves on because my fingers are tightly curled under.
Yes, I do get a bit irritated when I see people complaining that their 5k run has exacerbated their pain now they must phone the Dr to beg for more ___ (insert narcotic of choice). I deal with lack of control AND pain 99.9 percent of people can never begin to imagine. Please don't flame saying your Dr has said your latest MRIs or CTScans indicate your back is that of a 210 year old miner (or whatever). Just be grateful you're still able to DO things, whether or not you're in pain or not. -Ana

Ana--You are truly a brave woman and I do feel so badly for you being in this situation at such a young age--I have twin step-daughter's that are a year older than you and I cannot imagine what they would be like in your situation--or anyone really. My closest friend has a daughter your age is is always riding horses and working at the stables--truly a passion. I dare say that many if not most people in your situation would "Give Up" and shrink into depression--Just by showing up here and telling us your story makes me sit back and re-evaluate my life. In 1999 I became ill--felt dizzy--Long story that I will tell another time, but the outcome after 4 hospitalizations and 2 complete hip replacements has left me with chronic pancreatitus and without opiate medications, I would not even get out of bed. Thankfully I have a great doctor that will prescribe anything I have asked for and now I can live relatively pain free with the duragesic patch and some percocet when needed. Ana, you are an inspiration for all of us and I want to thank you for letting us see just how lucky most of us are--please hang around and let us know how you are, what you are doing etc. Does your Mom act as your caretaker or do you have someone else?--Oh, without finger movement, how do you type? Just curious--Roger

 
Old 10-19-2007, 04:00 PM   #13
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Re: New here, questions

it's late here in Germany and I can't sleep. To answer your questions, I type with my left knuckle. I was v. slow at first becoming faster in time. I have a carer who comes 2 x daily. In the morning, she helps me shower and dress then she helps me use the toilet in the eveing. She is lovely woman from Rumania. Either my mum, papa or sister also help me with things such as into bed. I have also a small dog - Kafka - whom I treasure. She lays by me now as I type. I thank you all for the greetings. Schöne Wochende LG, Ana

 
Old 10-19-2007, 04:29 PM   #14
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Re: New here, questions

Roger, I noticed you are in South FL! I have been there many times and have family in West Palm Beach (Wellington). I studied 6 months at U of Miami in 2000 and was involved with the Miami Project to Cure Paralysis - even met C.Reeve and H.Clinton!! Where in FL are you, if I may ask?

 
Old 10-20-2007, 04:14 AM   #15
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whitfield HB User
Re: New here, questions

Quote:
Originally Posted by AnaDE17 View Post
Roger, I noticed you are in South FL! I have been there many times and have family in West Palm Beach (Wellington). I studied 6 months at U of Miami in 2000 and was involved with the Miami Project to Cure Paralysis - even met C.Reeve and H.Clinton!! Where in FL are you, if I may ask?
Hi Ana--I am in Pompano Beach, just near Ft. Lauderdale--I was hospitalized at Jackson Memorial Hospital in Miami (Part of the U of Miami) in 2000 and that is only 40 miles from here--so you were there the same time as I was!I remember when C. Reeve and H. Clinton were there--(Such a shame about C. Reeve--what a brave guy!) When I could work, I worked in Wellington--there are many horse riding events in that part of Florida, are any of your family involved in them? Roger

 
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