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Posted: 8/2/2013 5:20:30 PM EST
[Last Edit: 11/26/2013 7:09:27 PM EST by amos1909]
In years past, I have posted some of my health problems and a few of you have brought up a baclofen pump. I did not have insurance or a way to pay for the pump, surgery, or constant upkeep. But I have been able to get insurance in the last little bit. I was just in to a specialist today that is adamant that I need the pump.

I had a stroke in June of 2010 that has caused horrific spasticity in my left side. Over time, this spasticity has become more and more debilitating and I am just a shell of who I was a year and a half ago. The spasticity is so bad that it is causing my blood pressure to jump to stroke levels while I am walking or doing any basic movement. So I am understanding that I probably should seriously consider the pump.

My main concern is that it has to be refilled at least every 6 months and what impact that would have in a Crap-Hit-the-Fan situation. I know (my doctors are hinting) that I probably don't have a lot of years left without any major changes to what my body is currently experiencing. So I feel like I am at a huge crossroads.

My question is, "Do any of you all know of someone who has had a baclofen pump put in and how much has it helped them?" I did not bring up the survival mindset with my doctor today, so I did not ask what would happen in a CHTF situation. Do any of you all have any input or thoughts on this matter?

My final thought-- what good is the CHTF situation if you don't live to see it.

Thanks again fellows.
amos1909

P.S. Yes, I am still pastoring the inner-city ministry. But on a very limited basis.

Edit 10-29-13 -Surgery is Scheduled for November 19th at 11 am.
Link Posted: 8/2/2013 5:32:19 PM EST
Perhaps I misunderstood your post, but, were I you, I would be more interested in staying alive than worrying about a possible SHTF.

If you live to see it, then worry about dealing with it.
Link Posted: 8/2/2013 5:50:08 PM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Him:
Perhaps I misunderstood your post, but, were I you, I would be more interested in staying alive than worrying about a possible SHTF.

If you live to see it, then worry about dealing with it.
View Quote
I appreciate what you are saying and that is basically my thought process too. It is a fairly invasive procedure and I am not certain how detrimental it could be to me in a CHTF situation.

I guess I am also asking if anyone knows someone who has had this procedure done and how much it has helped them. I can see the writing on the wall and know that without the pump, I probably will not outlive the pump's 7 year lifespan. I am a survivor; I have survived cancer, stroke, and numerous other medical problems. However, I want to do more than survive; on a good day, I can hardly hold my rifle's handguards with my left hand. On a bad day, I can't walk 25 feet with the spasticity causing my left leg and arm to be like a piece of wood. Hope this helps you undestand more of what I was asking.
Link Posted: 8/2/2013 5:56:28 PM EST
My mother had a stroke 2 years ago. She has no use of her right leg or her right arm. She was on oral baclofen for 6 months or so because of spasms and tightness. The dosage she had to take was so high though that she could not stay awake if she took enough baclofen to do anything noticeable with the spasms.

They put in a pump about 6-8 months after the stroke. I believe we have had her in for 3 refills now. Takes about 15 minutes every 6 months. Her medicare covers it - but last time I looked at the bill it was something like $2300 to fill the pump. She does not have any of the muscle tightness or spasms that she was having before the pump was installed. They have it on a very low dosage and it doesn't use more than about 1/2 of what they put in the pump in 6 months.

Once in a while she will get a cramp - especially if she gets chilled and tenses up - when that happens we give her a dose of oral baclofen.
Link Posted: 8/2/2013 6:02:16 PM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By johnh57:
My mother had a stroke 2 years ago. She has no use of her right leg or her right arm. She was on oral baclofen for 6 months or so because of spasms and tightness. The dosage she had to take was so high though that she could not stay awake if she took enough baclofen to do anything noticeable with the spasms.

They put in a pump about 6-8 months after the stroke. I believe we have had her in for 3 refills now. Takes about 15 minutes every 6 months. Her medicare covers it - but last time I looked at the bill it was something like $2300 to fill the pump. She does not have any of the muscle tightness or spasms that she was having before the pump was installed. They have it on a very low dosage and it doesn't use more than about 1/2 of what they put in the pump in 6 months.

Once in a while she will get a cramp - especially if she gets chilled and tenses up - when that happens we give her a dose of oral baclofen.
View Quote

Finally, a 13er that has a good answer.

Thank you for your reply. DO you know what dosage of baclofen was taking orally? The dr did tell me that they would have to refill my pump more often that 6 months but that is not a big deal in my mindset. I do long for a life without horrific pain and the ability to be able to walk each day without having to drag a 75-lb dead weight leg behind me.

Glad to hear that the pump has helped your mom and hope it continues to do so. My stroke has devastated me and I do long to contribute more than what i am currently doing.
Link Posted: 8/2/2013 6:15:27 PM EST
[Last Edit: 8/2/2013 6:19:18 PM EST by johnh57]
Hope I didn't break some kind of damn rule

I think we were at 10 mg 3 times/day. That may have been as much as we could give her without knocking her out. She only weighs in at 106 lb or so. I can pretty much lift her in and out of bed myself, she can pivot on her left leg, thats about it.

Wife unit (nurse) recalls that we were up to 60 mg /day to stem the spasms/cramps. But she slept all day and couldn't wake up.
Link Posted: 8/2/2013 6:16:06 PM EST
God bless you.

Your posts seem to be guaranteed to be uplifting or heart-wrenching; sometimes both.

I'm a chiropractor with no particular expertise in the use of Baclofen for stroke or MS patients. I did intern at a hospital specializing in traumatic brain injuries and para/quadraplegia and numerous stroke patients came to mind while reading you question.

Personally and professionally I have no love for long-term systemic medication for the treatment of symptoms -except- where relief or amelioration of the symptoms is the best modern medicine has to offer.

You would prefer a treatment that is more SHTF sustainable and that is certainly understandable.

Something about your post, or possibly some faint memory of past posts, suggests to me you trust your doctors. If you have tried some alternatives; oral Baclofen, benzodiazepines, Dantrolene, imidazolines then maybe the intrathecal pump is the way to go. Worst case, if SHTF, you are just back to your un/minimally medicated self when the pump runs dry ~maybe with a backup supply of whatever has worked second-best.

I guess my suggestion could be boiled down to go with your gut instinct but don't let some theoretical "perfect" solution be the enemy of a "good" available therapy.

Take care.
.

Link Posted: 8/2/2013 6:30:44 PM EST
Good Luck and God Bless ya....It will all work out. Go for it......
Link Posted: 8/2/2013 6:30:55 PM EST
[Last Edit: 8/4/2013 6:13:53 PM EST by amos1909]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By johnh57:
Hope I didn't break some kind of ---- rule

I think we were at 10 mg 3 times/day. That may have been as much as we could give her without knocking her out. She only weighs in at 106 lb or so. I can pretty much lift her in and out of bed myself, she can pivot on her left leg, thats about it.

Wife unit (nurse) recalls that we were up to 60 mg /day to stem the spasms/cramps. But she slept all day and couldn't wake up.
View Quote
I take 40 mg at night and it still half-way works. I get good sleep 1 out of 4 nights. That is on top of 900 mg of neurontin and 750 mg of Keppra. My gut tells me that the pump is probably the logical and best course of action. I just want to be certain. Thanks.

Just kidding on the 13er remark.
Link Posted: 8/2/2013 6:45:53 PM EST
Get the pump.

We don't always have to put every decision in a SHTF context. Be there for your family.
Link Posted: 8/2/2013 7:54:51 PM EST
Hi Amos,

Brother I don't know jack about this pump but you have already heard me say what I would tell you to do.

You know the distractions I am facing but please accept my apology for not being in touch better.

Bless You
PA
Link Posted: 8/2/2013 8:16:26 PM EST
Intrathecal baclofen withdrawal syndrome- a life-threatening complication of baclofen pump: A case report

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC514562/
Link Posted: 8/2/2013 8:17:09 PM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By regalrocket:
Get the pump.

We don't always have to put every decision in a SHTF context. Be there for your family.
View Quote

Well said
Link Posted: 8/2/2013 8:42:41 PM EST
I have heard so many positive outcomes with the pump. My wife had hers removed Monday. It wasn't working and causing her more pain, but she has Torticollis. Its odd but the test shot they did on her worked, but the pump never did.

You are going to be one sore person when its done, but like I said I have heard so many positive things about it. I think you should really consider it.

Hope all goes well and you get better.
Link Posted: 8/2/2013 8:44:50 PM EST
Amos, if you get the pump, there may be some 'creative/expedient' way to refill it -if you can get the medicine it uses.

That might be possible too.

Does the pump use a battery --or what is it's source of power to do what it does? Does the power source have a life longer than the medicine refill lasts.

There are MANY ways to skin a cat, and sometimes some may be very interesting...





Link Posted: 8/2/2013 8:56:54 PM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By EXPY37:
Amos, if you get the pump, there may be some 'creative/expedient' way to refill it -if you can get the medicine it uses.

That might be possible too.

Does the pump use a battery --or what is it's source of power to do what it does? Does the power source have a life longer than the medicine refill lasts.

There are MANY ways to skin a cat, and sometimes some may be very interesting...

View Quote




Pump has battery that's generally good for 7 years. It takes a hand held scanner to make adjustments and check settings. I have watched the refill process and I think the average person could pull it off if they could get the med.


Link Posted: 8/3/2013 12:32:38 AM EST
You should get the pump Amos. You are a good man, don't suffer needlessly!
Link Posted: 8/3/2013 3:37:55 AM EST
I'd say handle your real life issues first, then worry about what might happen in a possible scenario down the road.

Frankly, if any type of real collapse occurs, millions of folks are just going to die. Simple as that. Folks that are dependent on medical care, on electricity, on maintenance medications, on access to treatments such as dialysis...............well, they will start dying off. Sad, but then that's the way it will be.
Link Posted: 8/3/2013 4:37:15 AM EST
[Last Edit: 8/3/2013 4:37:49 AM EST by Him]
OOPS!, sorry.
Link Posted: 8/3/2013 4:39:58 AM EST
I don't know anything about baclofen or pumps, but I think you should do whatever you can to increase the duration and/or quality of life.

I hope you get better Amos
Link Posted: 8/3/2013 6:46:03 AM EST
Thanks fellows for the input. My wife and I are wanting more info before we fully decide but we are both leaning toward having one placed in. The withdrawal effect could be devastating but I really want a fuller life ( I would be an idiot to not want that).
I take so many meds that I would have have a hard time surviving a long-term situation. I still wanted a different perspective, so I thought I would ask "the Hive".


Link Posted: 8/3/2013 6:51:52 AM EST
[Last Edit: 8/3/2013 6:55:58 AM EST by amos1909]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By EXPY37:
Amos, if you get the pump, there may be some 'creative/expedient' way to refill it -if you can get the medicine it uses.

That might be possible too.

Does the pump use a battery --or what is it's source of power to do what it does? Does the power source have a life longer than the medicine refill lasts.

There are MANY ways to skin a cat, and sometimes some may be very interesting...

View Quote

The battery life now lasts longer than the pump. The pump is good for about 7 years. The doctor felt that he would put the larger pump in (it holds double the meds) but more than likely, I would have to have it refilled more often than every six months. I am a big man and it would take more meds to control my problem.

The FDA says that they can only leave the Baclefen in for six months, so it has to be emptied and they then replace the meds.

Link Posted: 8/3/2013 6:53:41 AM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By PA22-400:
Hi Amos,

Brother I don't know jack about this pump but you have already heard me say what I would tell you to do.

You know the distractions I am facing but please accept my apology for not being in touch better.

Bless You
PA
View Quote


Thanks, I got your IM. Please, feel free to give me a call sometime.
Link Posted: 8/3/2013 7:03:34 AM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By EXPY37:
Amos, if you get the pump, there may be some 'creative/expedient' way to refill it -if you can get the medicine it uses.

That might be possible too.

Does the pump use a battery --or what is it's source of power to do what it does? Does the power source have a life longer than the medicine refill lasts.

There are MANY ways to skin a cat, and sometimes some may be very interesting...

View Quote

I agree and I would like to know more about refilling it and what would happen if it stopped working. Would my body tollerate it or reject it (I think that this is more of a concern than withdrawell from the meds)? The pump is simular to having a port, so if I had the meds, any RN/Dr could help me out. But it does need the handheld computor to program it.

I am currently orally taking over 100 mgs each day. It helps but not to the degree that a pump would (if I passed the trail test). I could just keep buying the pills and have them on had.
Link Posted: 8/3/2013 7:15:29 AM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By cmw:
God bless you.

Your posts seem to be guaranteed to be uplifting or heart-wrenching; sometimes both.

I'm a chiropractor with no particular expertise in the use of Baclofen for stroke or MS patients. I did intern at a hospital specializing in traumatic brain injuries and para/quadraplegia and numerous stroke patients came to mind while reading you question.

Personally and professionally I have no love for long-term systemic medication for the treatment of symptoms -except- where relief or amelioration of the symptoms is the best modern medicine has to offer.

You would prefer a treatment that is more SHTF sustainable and that is certainly understandable.

Something about your post, or possibly some faint memory of past posts, suggests to me you trust your doctors. If you have tried some alternatives; oral Baclofen, benzodiazepines, Dantrolene, imidazolines then maybe the intrathecal pump is the way to go. Worst case, if SHTF, you are just back to your un/minimally medicated self when the pump runs dry ~maybe with a backup supply of whatever has worked second-best.

I guess my suggestion could be boiled down to go with your gut instinct but don't let some theoretical "perfect" solution be the enemy of a "good" available therapy.

Take care.
.

View Quote

Thanks for the kind words and encouragement. I'm sorry that my post are that way. I do trust most of my doctors, the ones that do not earn my trust tend to get fired fairly quickly. If they will not listen to me, I don't keep them long!

I have been on the oral Baclofen/Neurotin/Tizanidine for almost 3 years and they added Keppra a couple months ago. I believe that the Neurotin/Keppra are for the pulsing, shooting pain (it is like touching an electric fence) that shoots through my left side 24/7.

It seems that we have tried everything else and this is the last thing to try. My gut longs to be more normal and says "GO FOR IT"! But I did want more info before making the jump.

I am miserable right now. I am thankful for my life, wife, children and everything else that the Lord has placed in my life right now. But I am just a small percentage of the man that I was 1 year ago. I want more!!!!
Link Posted: 8/3/2013 12:39:22 PM EST
Well sounds like you won't be around long without it.

Sorry to be harsh. You need to do and enjoy as much of life as you can. Nobody lives forever.
Link Posted: 8/3/2013 3:17:06 PM EST
I hope you get some relief. Will pray for you.

I'd try the pump and not worry about SHTF at this time. Maybe discuss it with your neurologist or pain mngment doc. Maybe if the pump ran out you could supplement with oral.
Link Posted: 8/3/2013 3:23:56 PM EST
Whatever you do Amos best of luck to you.
Link Posted: 8/3/2013 4:56:41 PM EST
Friend, I would get the pump. You are possibly gaining an immense improvement in your quality of life.
It's the old "Quality vs. Quantity" thing.
Why handicap yourself and live in misery NOW, and possibly for the rest of your life, in order to hopefully get through an event that may NEVER happen?

This probably isn't legal, but you could always try to stockpile an adequate supply of oral baclofen, just in case your pump would fail / could not get refilled
during a protracted event.
If nothing else, the oral drug may keep you from having major withdrawl symptoms / complications.

I've read many of your posts here.
You always seemed to be a good and honorable man.
I'm so sorry you must consider this scenario, and endure your present hardships.

Good luck to you, Sir.

Link Posted: 8/4/2013 10:52:02 AM EST
Think about what's most likely. You are far more likely to live a non SHTF existence which could be greatly helped by the baclofen pump than you are to go into a SHTF situation that lasts longer than the amount of baclofen in your pump. Yes. I suppose Katrina could hit the day before you were supposed to get yours refilled, but come on, think about the big picture. Have you had the trial injection, and did it help?

Are you only on 900 mg of Neurontin daily? Many people are on larger doses, up to 900 three times daily. If you're getting relief at your current dose, that's great, and increasing does increase the risks of side effects, but many people are on higher doses.

As for the surgery, on the scale of things, I would put it more toward minor than major. That said, the only minor surgery is one that someone else has.

I think you're heading off in a direction that I see many here heading. They get wrapped up in the big things that they forget to see the bigger picture. They want to be able to kill their neighbor from 1000 yards when they come seeking some help with food during the 1-2 week disaster, forgetting they have a year supply of food in their basement. They are so concerned about surviving the unlikely zombie apocalypse that they forget to live a happy life in the mean time. Besides, if you can function better with the pump, you are more likely to survive a SHTF situation.

Just to be clear. This is not medical advice. It's just one guy's opinion.
Link Posted: 8/4/2013 4:06:29 PM EST
[Last Edit: 8/4/2013 6:26:11 PM EST by amos1909]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By bubalus:
Think about what's most likely. You are far more likely to live a non SHTF existence which could be greatly helped by the baclofen pump than you are to go into a SHTF situation that lasts longer than the amount of baclofen in your pump. Yes. I suppose Katrina could hit the day before you were supposed to get yours refilled, but come on, think about the big picture. Have you had the trial injection, and did it help?

Are you only on 900 mg of Neurontin daily? Many people are on larger doses, up to 900 three times daily. If you're getting relief at your current dose, that's great, and increasing does increase the risks of side effects, but many people are on higher doses.

As for the surgery, on the scale of things, I would put it more toward minor than major. That said, the only minor surgery is one that someone else has.

I think you're heading off in a direction that I see many here heading. They get wrapped up in the big things that they forget to see the bigger picture. They want to be able to kill their neighbor from 1000 yards when they come seeking some help with food during the 1-2 week disaster, forgetting they have a year supply of food in their basement. They are so concerned about surviving the unlikely zombie apocalypse that they forget to live a happy life in the mean time. Besides, if you can function better with the pump, you are more likely to survive a SHTF situation.

Just to be clear. This is not medical advice. It's just one guy's opinion.
View Quote


Thank you for your input, I don't think you fully understood my original post. My wife and I are really leaning (90%) toward having the surgery. I did not mean to come across as it being major surgery. It will require a one-night stay in the hospital. I think that I have had test that have been same (spinal tap, brain Arteriogram, bone marrow biopsy, radiation).

I was trying to ask if anyone had someone that had the surgery and how it helped them. I also wanted to find out what would be the long-term effect in a CHTF scenario. My main concern is what would happen if CHTF and I did run out of meds. Going cold-turkey I think I could handle. Just wanted to make certain that there were no other major concerns (rejection, infection, etc) with the device. I really can't ask the specialist these questions-- he might look at me weird.

My pharmacist and doctor will only allow me to take 1500 mg of neurontin a day. I cheat sometimes and take a little more, but there are some concerns about kidney problems with some of the other meds I am taking.

The 6-8 hour trail is the next step that I would take. We have not set that up yet as we are waiting for the ins. to approve it.


On the thought of me preparing for 1000 yd shots, I believe that most here would believe that I tend to come down on the other side of that equation. I tend to want to help people to the umpth degree, I have had many on this site attack me for being to easy-going. I would only take that shot if it was my last terrible option!
Link Posted: 8/4/2013 4:54:31 PM EST
Everyone is different, but be prepared to spend more than 1 night in the hospital. I don't see it as major surgery either, but they will be messing around with your spinal column.

Ask the doc the odd questions anyway. He works for you.

They are going to want you to lay flat for 24 hours after the surgery. Are you comfortable pissing in a bottle while in bed?
Link Posted: 8/4/2013 5:55:49 PM EST
[Last Edit: 8/4/2013 6:30:05 PM EST by amos1909]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By WHITE_WOLFE:
Everyone is different, but be prepared to spend more than 1 night in the hospital. I don't see it as major surgery either, but they will be messing around with your spinal column.

Ask the doc the odd questions anyway. He works for you.

They are going to want you to lay flat for 24 hours after the surgery. Are you comfortable peeing in a bottle while in bed?
View Quote

I can do it in my sleep! I've had brain surgery and numourous other test/surgeries, so it is not that big of deal.

I have been on Bed-rest so manying times that I have lost count. I fought cancer from 1993-2003, so this seems minor. I did speak to my church body about it and my associate pastor is begging me to do it! He says that he has watched me become less capable over the last 3 years. I am thankful for his honesty and it helps open my eyes in a greater way. I know that I am really not the man that I use to be and his honesty just reinforced that.

It is hard to ask my doctor those sort of questions. I am trying to figure out how to word it.

Thanks again for the input.

I usally prepare for worse case so thanks for the heads up on the hospital stay. He said that the hard part was going to be the 3-6 months of therapy on the hip, knee and foot. I am tired of dragging my left leg around like a 200 lb dead weight, so I willing to go through the pain to get the gain. I have had four physical therapist tell me that they could do nothing more to help me. So this is the first good news in 2 years or so.
Link Posted: 8/4/2013 7:14:07 PM EST
[Last Edit: 8/4/2013 7:20:25 PM EST by Blake]
This is my job! I am the Senior Medtronic Rep in Tennessee. I believe you are in Nooga, yes? I know your managing doc and you implanting doc. I can answer any question you could ever have. IM me and we can talk.

Not wanting to insult others posting in this thread, be careful who and what you listen to. ITB is not systemic...it's intrathecal. Unless someone has been in, implanted, or managed over 1000 pumps...catch my drift?
Link Posted: 8/4/2013 7:44:43 PM EST
[Last Edit: 2/6/2014 4:23:23 PM EST by amos1909]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Blake:
This is my job! I am the Senior Medtronic Rep in Tennessee. I believe you are in Nooga, yes? I know your managing doc and you implanting doc. I can answer any question you could ever have. IM me and we can talk.

Not wanting to insult others posting in this thread, be careful who and what you listen to. ITB is not systemic...it's intrathecal. Unless someone has been in, implanted, or managed over 1000 pumps...catch my drift?
View Quote


just sent you an IM. I do believe that you gave me some advice and tried to help me out a couple years ago. I was hoping (when I started this thread) that you would contact me again.
Link Posted: 8/4/2013 9:01:00 PM EST
I was happy to see someone respond that actually works in this field and can answer your questions. Praying for you brother.
Link Posted: 8/5/2013 9:38:05 AM EST
Amos,

I don't get to post in here much anymore, my path has changed too...but I saw your thread and had to reply.
Brother you are living more of a real-life CHTF than most of us, and I for one admire your commitment to God, your family, and your flock...we all face challenges and when I think of yours it makes mine seem petty.
Look at this for what it is, a possible response to real life SHTF event. I think that when the odds are weighed by a man using the best information he can get the decision would be the one you are leaning towards...getting the pump. You may recall some of our conversations about my own SHTF stuff, and while I wish I hadn't had to take the path I took, the end result is all about quality of life, and that, my friend, is what you are chasing here...improved quality of life. Not just for you, but for what it gives to your wife, your kids, and those around you.
My wife would tell you I wasn't worth bein' around before I took my steps, the pain and what it did to me took the me she loved away, and left in it's place a guy who was so tired from fighting pain, so miserable that my choice was much like yours...do this to restore some of the living to life.
That is what you are doing. Looking for a way to restore some of the living to your life.
All the best...
Link Posted: 8/5/2013 6:21:11 PM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By SPBCTS:
Amos,

I don't get to post in here much anymore, my path has changed too...but I saw your thread and had to reply.
Brother you are living more of a real-life CHTF than most of us, and I for one admire your commitment to God, your family, and your flock...we all face challenges and when I think of yours it makes mine seem petty.
Look at this for what it is, a possible response to real life SHTF event. I think that when the odds are weighed by a man using the best information he can get the decision would be the one you are leaning towards...getting the pump. You may recall some of our conversations about my own SHTF stuff, and while I wish I hadn't had to take the path I took, the end result is all about quality of life, and that, my friend, is what you are chasing here...improved quality of life. Not just for you, but for what it gives to your wife, your kids, and those around you.
My wife would tell you I wasn't worth bein' around before I took my steps, the pain and what it did to me took the me she loved away, and left in it's place a guy who was so tired from fighting pain, so miserable that my choice was much like yours...do this to restore some of the living to life.
That is what you are doing. Looking for a way to restore some of the living to your life.
All the best...
View Quote



Thanks again for your advice and experiences. I hope that I can have restored function in my left side, but I learned that the best way to survive cancer was to expect the worst. That is one reason why I posted this thread and hoped for input.

I would walk around the world twice in my present condition to make my wife and children's life be better than what it is now. My illness has put a huge amount of stress on my wife and family. My wife has had to step in and do things at church that I would do. IN this process, she has had to break up fights and ended up getting slapped and beat up on some. I am for doing anything that can make things easier on my wife.

Another plus side is that I could do the thing that gives me the second most pleasure in life, and that is serving the souls that God has placed in my care. If I can be a better husband and dad and also be a better pastor, that would almost be like heaven to me.

Thanks again for all your sincere input, may God richly bless you and your family.
Amos1909
Link Posted: 8/5/2013 6:25:05 PM EST
[Last Edit: 8/8/2013 7:14:46 AM EST by amos1909]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Blake:
This is my job! I am the Senior Medtronic Rep in Tennessee. I believe you are in Nooga, yes? I know your managing doc and you implanting doc. I can answer any question you could ever have. IM me and we can talk.

Not wanting to insult others posting in this thread, be careful who and what you listen to. ITB is not systemic...it's intrathecal. Unless someone has been in, implanted, or managed over 1000 pumps...catch my drift?
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Just got off the phone with Blake and he has alleviated a lot of my concerns. I do want to say that the SF is some of the greatest guys/gals in the world. I am very honored to know and be a part.

After 30 minutes with him, I do believe that I am going to call my doctor tomorrow and see if he can schedule the trial test. I will keep my fingers crossed and hope that the Lord uses this device to improve my health to where I can be a husband/father and pastor in the way that I long to be. That would be a dream come true.
Link Posted: 8/5/2013 8:38:21 PM EST
Brother Amos, praying for you and your wonderful family, I like many only know you through here. But you are an inspiring man. Best of luck to you. Even with all my years in the ER. I have nothing to add except to live each day as healthfully and with as little suffering as possible. Youll be surprised at how your life will improve with adequate pain and spasm relief.
Link Posted: 8/8/2013 7:15:59 AM EST
Update: I called the doctor Tuesday and he is out of town at a conferance. They are going to get to work on it (set up the trail) next week.

Thanks again for all the info and thoughts!
Link Posted: 8/16/2013 3:28:41 PM EST
Well, I had hoped that I would get in sooner for the trail but it is going to be done the middle of next week.

I am hoping that it will work for me!
Link Posted: 9/13/2013 11:08:09 AM EST
[Last Edit: 9/13/2013 11:10:10 AM EST by amos1909]
The Baclofen test yesterday was very productive. The baclofen did increase my range of motion in my arm, which was not expected. It did help the muscles in my left leg more than anticipated. We did meet with the specialist this morning and we are going to go forward with the baclofen pump.

The doctor was up front in stating that the baclofen would help with the spasticity and would decrease the pain by a huge level, but at this point, he is fairly certain that there would be no increase in mobility. In other words, the damage has become permanent.

I know that I have a lot of therapy and fight ahead of me, but this is the first light in a dark tunnel in three years. I am probably crazy for saying this, but I am looking forward to the fight. I do serve a Savior who has proven Himself stronger than all my health problems and inner-city gang problem through the years.
We are now waiting for the surgeon to schedule the surgery and to get final approval from insurance.

Thanks again,

Amos1909

Link Posted: 9/13/2013 1:38:39 PM EST
Well Well
I cannot think of an animation that fits this occasion.

I hope it goes well Amos

I am happy for you that the first test had positive outlook.

Bless you
PA
Link Posted: 9/13/2013 2:11:16 PM EST
Ditto what PA said! I wish you the very best of luck and God's blessings upon the procedure and hopeful improvements!
Link Posted: 9/13/2013 2:25:39 PM EST
Prayers asked for you Amos. I hope that God will Bless you with relief from this health problem.
Link Posted: 10/28/2013 10:52:58 PM EST
[Last Edit: 10/28/2013 10:56:10 PM EST by amos1909]
Finally heard back from my surgeon. I will be having the pump put in on November 19th at 11 am. I greatly covet your prayers.

I am hoping that this will restore some of the man that I use to be!

Thanks
Link Posted: 10/29/2013 3:48:21 AM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By amos1909:
Finally heard back from my surgeon. I will be having the pump put in on November 19th at 11 am. I greatly covet your prayers.

I am hoping that this will restore some of the man that I use to be!

Thanks
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Great news! Prayers sent, and I'll send more on the day of.
Link Posted: 10/29/2013 9:38:44 AM EST
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By amos1909:
Finally heard back from my surgeon. I will be having the pump put in on November 19th at 11 am. I greatly covet your prayers.

I am hoping that this will restore some of the man that I use to be!

Thanks
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Prayers sent
Link Posted: 10/29/2013 9:58:11 AM EST
You and yours will remain in my prayers as you work through this. It seems sorta strange that during the test run you felt an improvement in range of motion, yet the doc doesn't seem to think the pump will provide the same result?
Makes you wonder how much they try to under-promise and over-deliver on this stuff.
Link Posted: 10/29/2013 12:39:34 PM EST
[Last Edit: 10/29/2013 12:39:52 PM EST by EXPY37]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By SPBCTS:
You and yours will remain in my prayers as you work through this. It seems sorta strange that during the test run you felt an improvement in range of motion, yet the doc doesn't seem to think the pump will provide the same result?
Makes you wonder how much they try to under-promise and over-deliver on this stuff.
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The stories I could tell you...

Good luck Amos!


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