Re: [QUAD-L] new to group with lots of questions
That's the same exact advice I got from my doctor. I have my spasms under control and he refused to even consider the pump unless I have some sort of problems with the medication. On Tue, Apr 27, 2010 at 1:23 PM, Aaron Mann aman...@gmail.com wrote: Welcome, Karan! While each of our disabilities affect each of us differently, none of us are alone in this new adventure. My Uncle is a Dr. who studied the effects of indwelling medicinal pumps. His advice: Only as a very last resort. I took 20mg Baclofen 4x a day for 20 years, then switched to 600mg Neurotin 3x a day. If you talk with a Dr. who really understands muscle spasms as the neurological level AND understands what each of the receptor inhibitor drugs do, then you will find the right option for your specific needs. I, too, have a son. He is a great motivator for me. I've been considering writing a book on my experiences being a Dad in a chair. There are many tricks I had to learn on my own in raising him. God bless and welcome. Aaron Mann C4-5, 9/8/88 -Original Message- From: karan alexander [mailto:kabea...@optonline.net] Sent: Monday, April 26, 2010 6:59 PM To: quad-list@eskimo.com Subject: [QUAD-L] new to group with lots of questions Hi, I was walking with my children 2 yrs ago was struck by a teen who went off the road struck me as I was bent over. I am c4, 5 6 incomplete with feeling to the toes, just very altered sensation. I was in the hospital for almost 1 yr. I use a manual chair to amazement, I have bladder sensation bowels. Although I have my share of spasms (I take 10mg ditropn b.i.d), leakages at night and my bowels respond every 2-3 days with no added help. Pre-accident was normally every day. I have lots of tone/spasticity in L. leg am considering baclofen pump. I only take 20mg now of baclofen which does nothing. Any higher dose tires me liver function tests go abnormal. I am hooked on 25mcg fentanyl patches q48 hrs and still have pain. I refuse to add more meds. I do not ever sleep for more than an hr. every night. Waking in the a.m. is horrible - never used to be. I want to wean off fentanyl. Since I transfer to toilet with the transfer board (lots of work), I would love to find pants that help b/c I can't pull them up under me. This injury has caused our world to turn upside down some days it is so overwhelming. My kids keep me going God's healing. I feel like I'm the only mom in the world going thru this. At the time of the accident, I was 5wks from grad. college (RN). Since then, I graduated passed boards. Now what I LOVE nursing it's not easy to find it from a w/c. If I am assisted to stand, I can hold a walker for 5-10 mins a few steps - left leg hinders advancing it so dr. wants me to consider pump. I have great use of my dominant hand arm, left fingers are closed. Anyway, I could go on forever, so thanks for listening.
RE: [QUAD-L] new to group with lots of questions
That sounds like a great idea for a book, I would definitely buy it and read it. Unfortunately I have no children yet, but I do plan to one day. -Original Message- From: Aaron Mann [mailto:aman...@gmail.com] Sent: Tuesday, April 27, 2010 10:23 AM To: 'karan alexander'; quad-list@eskimo.com Subject: RE: [QUAD-L] new to group with lots of questions Welcome, Karan! While each of our disabilities affect each of us differently, none of us are alone in this new adventure. My Uncle is a Dr. who studied the effects of indwelling medicinal pumps. His advice: Only as a very last resort. I took 20mg Baclofen 4x a day for 20 years, then switched to 600mg Neurotin 3x a day. If you talk with a Dr. who really understands muscle spasms as the neurological level AND understands what each of the receptor inhibitor drugs do, then you will find the right option for your specific needs. I, too, have a son. He is a great motivator for me. I've been considering writing a book on my experiences being a Dad in a chair. There are many tricks I had to learn on my own in raising him. God bless and welcome. Aaron Mann C4-5, 9/8/88 -Original Message- From: karan alexander [mailto:kabea...@optonline.net] Sent: Monday, April 26, 2010 6:59 PM To: quad-list@eskimo.com Subject: [QUAD-L] new to group with lots of questions Hi, I was walking with my children 2 yrs ago was struck by a teen who went off the road struck me as I was bent over. I am c4, 5 6 incomplete with feeling to the toes, just very altered sensation. I was in the hospital for almost 1 yr. I use a manual chair to amazement, I have bladder sensation bowels. Although I have my share of spasms (I take 10mg ditropn b.i.d), leakages at night and my bowels respond every 2-3 days with no added help. Pre-accident was normally every day. I have lots of tone/spasticity in L. leg am considering baclofen pump. I only take 20mg now of baclofen which does nothing. Any higher dose tires me liver function tests go abnormal. I am hooked on 25mcg fentanyl patches q48 hrs and still have pain. I refuse to add more meds. I do not ever sleep for more than an hr. every night. Waking in the a.m. is horrible - never used to be. I want to wean off fentanyl. Since I transfer to toilet with the transfer board (lots of work), I would love to find pants that help b/c I can't pull them up under me. This injury has caused our world to turn upside down some days it is so overwhelming. My kids keep me going God's healing. I feel like I'm the only mom in the world going thru this. At the time of the accident, I was 5wks from grad. college (RN). Since then, I graduated passed boards. Now what I LOVE nursing it's not easy to find it from a w/c. If I am assisted to stand, I can hold a walker for 5-10 mins a few steps - left leg hinders advancing it so dr. wants me to consider pump. I have great use of my dominant hand arm, left fingers are closed. Anyway, I could go on forever, so thanks for listening.
Re: [QUAD-L] new to group with lots of questions
The pump is worth consideration, but only if the doctors feel that you are a good candidate for the procedure. Small amounts of medicine go directly to the lesion. Let us all know what you do. Best Wishes In a message dated 4/26/2010 6:58:47 P.M. Central Daylight Time, kabea...@optonline.net writes: Hi, I was walking with my children 2 yrs ago was struck by a teen who went off the road struck me as I was bent over. I am c4, 5 6 incomplete with feeling to the toes, just very altered sensation. I was in the hospital for almost 1 yr. I use a manual chair to amazement, I have bladder sensation bowels. Although I have my share of spasms (I take 10mg ditropn b.i.d), leakages at night and my bowels respond every 2-3 days with no added help. Pre-accident was normally every day. I have lots of tone/spasticity in L. leg am considering baclofen pump. I only take 20mg now of baclofen which does nothing. Any higher dose tires me liver function tests go abnormal. I am hooked on 25mcg fentanyl patches q48 hrs and still have pain. I refuse to add more meds. I do not ever sleep for more than an hr. every night. Waking in the a.m. is horrible - never used to be. I want to wean off fentanyl. Since I transfer to toilet with the transfer board (lots of work), I would love to find pants that help b/c I can't pull them up under me. This injury has caused our world to turn upside down some days it is so overwhelming. My kids keep me going God's healing. I feel like I'm the only mom in the world going thru this. At the time of the accident, I was 5wks from grad. college (RN). Since then, I graduated passed boards. Now what I LOVE nursing it's not easy to find it from a w/c. If I am assisted to stand, I can hold a walker for 5-10 mins a few steps - left leg hinders advancing it so dr. wants me to consider pump. I have great use of my dominant hand arm, left fingers are closed. Anyway, I could go on forever, so thanks for listening.
RE: [QUAD-L] new to group with lots of questions
Welcome, Karan! While each of our disabilities affect each of us differently, none of us are alone in this new adventure. My Uncle is a Dr. who studied the effects of indwelling medicinal pumps. His advice: Only as a very last resort. I took 20mg Baclofen 4x a day for 20 years, then switched to 600mg Neurotin 3x a day. If you talk with a Dr. who really understands muscle spasms as the neurological level AND understands what each of the receptor inhibitor drugs do, then you will find the right option for your specific needs. I, too, have a son. He is a great motivator for me. I've been considering writing a book on my experiences being a Dad in a chair. There are many tricks I had to learn on my own in raising him. God bless and welcome. Aaron Mann C4-5, 9/8/88 -Original Message- From: karan alexander [mailto:kabea...@optonline.net] Sent: Monday, April 26, 2010 6:59 PM To: quad-list@eskimo.com Subject: [QUAD-L] new to group with lots of questions Hi, I was walking with my children 2 yrs ago was struck by a teen who went off the road struck me as I was bent over. I am c4, 5 6 incomplete with feeling to the toes, just very altered sensation. I was in the hospital for almost 1 yr. I use a manual chair to amazement, I have bladder sensation bowels. Although I have my share of spasms (I take 10mg ditropn b.i.d), leakages at night and my bowels respond every 2-3 days with no added help. Pre-accident was normally every day. I have lots of tone/spasticity in L. leg am considering baclofen pump. I only take 20mg now of baclofen which does nothing. Any higher dose tires me liver function tests go abnormal. I am hooked on 25mcg fentanyl patches q48 hrs and still have pain. I refuse to add more meds. I do not ever sleep for more than an hr. every night. Waking in the a.m. is horrible - never used to be. I want to wean off fentanyl. Since I transfer to toilet with the transfer board (lots of work), I would love to find pants that help b/c I can't pull them up under me. This injury has caused our world to turn upside down some days it is so overwhelming. My kids keep me going God's healing. I feel like I'm the only mom in the world going thru this. At the time of the accident, I was 5wks from grad. college (RN). Since then, I graduated passed boards. Now what I LOVE nursing it's not easy to find it from a w/c. If I am assisted to stand, I can hold a walker for 5-10 mins a few steps - left leg hinders advancing it so dr. wants me to consider pump. I have great use of my dominant hand arm, left fingers are closed. Anyway, I could go on forever, so thanks for listening.
Re: [QUAD-L] new to group with lots of questions
Kabear97, I'm Dave and had a C3-4 incomplete dislocate in 1967 from a trampoline. I finished college in Math and with some additional classes, taught school for a few years. I loved those hours and most kids although the money wasn't all that hot. I left after getting a call from Honeywell to do computer programming in 1979. I spent a good share of '76, '77, '78' and '79 signing up with every state and private placement agency and sending out many resumes on my own. The state came through with a home based computer job about 2 days before Honeywell called. I'm sure I was hired to fill a 'quota' but I didn't and don't care as I did a lot of very good work for them for 25 years before they gave my job to India and got 5 engineers for the same price. I had and understand many lows involved with SCI life and want to assure that nothing is forever - things change. WE are living life at different levels now and it's wondrous to see what is available at those different levels. My mom left me with a few very insightful thoughts - if you hadn't broken your neck - you'd have killed yourself with your mach II, hair on fire lifestyle, AND you still have the most magnificent organ made by God to get you through life - your brain still works just fine - don't goof that up. (that was a marijuana reference). Please know that SCI life is an existence of ongoing experiments to see what works for you, all the rules have changed and you need to try EVERYTHING. Giving up just isn't a reasonable choice. Everyone on this list has something unique to give to you and I'm sure they will all share info as you ask. Please don't be shy - you are still in a pretty crappy stage of SCI. It DOES get better. AZDAVE. Nothing sucks more than that moment during an argument when you realize you're wrong. _Daveoconnell.com_ (http://daveoconnell.com/) In a message dated 4/26/2010 4:58:47 P.M. US Mountain Standard Time, kabea...@optonline.net writes: Hi, I was walking with my children 2 yrs ago was struck by a teen who went off the road struck me as I was bent over. I am c4, 5 6 incomplete with feeling to the toes, just very altered sensation. I was in the hospital for almost 1 yr. I use a manual chair to amazement, I have bladder sensation bowels. Although I have my share of spasms (I take 10mg ditropn b.i.d), leakages at night and my bowels respond every 2-3 days with no added help. Pre-accident was normally every day. I have lots of tone/spasticity in L. leg am considering baclofen pump. I only take 20mg now of baclofen which does nothing. Any higher dose tires me liver function tests go abnormal. I am hooked on 25mcg fentanyl patches q48 hrs and still have pain. I refuse to add more meds. I do not ever sleep for more than an hr. every night. Waking in the a.m. is horrible - never used to be. I want to wean off fentanyl. Since I transfer to toilet with the transfer board (lots of work), I would love to find pants that help b/c I can't pull them up under me. This injury has caused our world to turn upside down some days it is so overwhelming. My kids keep me going God's healing. I feel like I'm the only mom in the world going thru this. At the time of the accident, I was 5wks from grad. college (RN). Since then, I graduated passed boards. Now what I LOVE nursing it's not easy to find it from a w/c. If I am assisted to stand, I can hold a walker for 5-10 mins a few steps - left leg hinders advancing it so dr. wants me to consider pump. I have great use of my dominant hand arm, left fingers are closed. Anyway, I could go on forever, so thanks for listening. (http://daveoconnell.com/)
[QUAD-L] new to group with lots of questions
Hi, I was walking with my children 2 yrs ago was struck by a teen who went off the road struck me as I was bent over. I am c4, 5 6 incomplete with feeling to the toes, just very altered sensation. I was in the hospital for almost 1 yr. I use a manual chair to amazement, I have bladder sensation bowels. Although I have my share of spasms (I take 10mg ditropn b.i.d), leakages at night and my bowels respond every 2-3 days with no added help. Pre-accident was normally every day. I have lots of tone/spasticity in L. leg am considering baclofen pump. I only take 20mg now of baclofen which does nothing. Any higher dose tires me liver function tests go abnormal. I am hooked on 25mcg fentanyl patches q48 hrs and still have pain. I refuse to add more meds. I do not ever sleep for more than an hr. every night. Waking in the a.m. is horrible - never used to be. I want to wean off fentanyl. Since I transfer to toilet with the transfer board (lots of work), I would love to find pants that help b/c I can't pull them up under me. This injury has caused our world to turn upside down some days it is so overwhelming. My kids keep me going God's healing. I feel like I'm the only mom in the world going thru this. At the time of the accident, I was 5wks from grad. college (RN). Since then, I graduated passed boards. Now what I LOVE nursing it's not easy to find it from a w/c. If I am assisted to stand, I can hold a walker for 5-10 mins a few steps - left leg hinders advancing it so dr. wants me to consider pump. I have great use of my dominant hand arm, left fingers are closed. Anyway, I could go on forever, so thanks for listening.
Re: [QUAD-L] new to group with lots of questions
Welcome to the list Karen. I know there are many people here who can give you better advice than me, so I'll let them chime in whenever they feel the need. As for a baclofen pump, I wouldn't go that route until you have exhausted other spasticity medication. Almost all of them leave you somewhat fatigued, but I have been able to function pretty well on a lot more spasticity medications than you have mentioned. Talk to your doctor about all the other options available. A baclofen pump should be a last resort. At least in my opinion. Quadius On Mon, Apr 26, 2010 at 7:58 PM, karan alexander kabea...@optonline.netwrote: Hi, I was walking with my children 2 yrs ago was struck by a teen who went off the road struck me as I was bent over. I am c4, 5 6 incomplete with feeling to the toes, just very altered sensation. I was in the hospital for almost 1 yr. I use a manual chair to amazement, I have bladder sensation bowels. Although I have my share of spasms (I take 10mg ditropn b.i.d), leakages at night and my bowels respond every 2-3 days with no added help. Pre-accident was normally every day. I have lots of tone/spasticity in L. leg am considering baclofen pump. I only take 20mg now of baclofen which does nothing. Any higher dose tires me liver function tests go abnormal. I am hooked on 25mcg fentanyl patches q48 hrs and still have pain. I refuse to add more meds. I do not ever sleep for more than an hr. every night. Waking in the a.m. is horrible - never used to be. I want to wean off fentanyl. Since I transfer to toilet with the transfer board (lots of work), I would love to find pants that help b/c I can't pull them up under me. This injury has caused our world to turn upside down some days it is so overwhelming. My kids keep me going God's healing. I feel like I'm the only mom in the world going thru this. At the time of the accident, I was 5wks from grad. college (RN). Since then, I graduated passed boards. Now what I LOVE nursing it's not easy to find it from a w/c. If I am assisted to stand, I can hold a walker for 5-10 mins a few steps - left leg hinders advancing it so dr. wants me to consider pump. I have great use of my dominant hand arm, left fingers are closed. Anyway, I could go on forever, so thanks for listening.
