5 replies to this topic

[LadyDee]

Hello,

I just turned 34 and have been most;y homebound; bedbound during winters and rainstorms, for 4 years and on disability since i was 25.

I am NOT a posser-- I have Fibromyalgia. I'm not paralized. if anyone thinks I've have invaded your space, then go watch Monsterball and tell who the disabled chick-- the lady in the wheel chair driving her kids to school and holding down a job, on me who'se been a labrat for every drug that has a "similar symptom"-- parkinson, MS, lupus, epolapcy, etc.

I'm writing to you because I need help and I'm on the verge of just giving up this day to day of daily fental patches, 10mg percocets (2-3 at a time) clonazap, ambien, any thing more and someone's gonna mug my house

sorry if that seemed hostily, I just want to lay it on the line: I'm not paralized but I am stuck in my bed most days. The doctors tell me I can't get any worse, every year I've gotten worse. the doctors say it's not fatal, but they don't know what causes it. My hands just decide to not work one day. I'll be holding a cup and don't even know I dropped it until I hear the sound of broken glass. (Now I use plastic, so it's more a Pinging sound bouncing against the ground and then rolling to a stop).

we are all at the mercy of the last drugs, all hoping someone finds a "cure"!

I was researching this morphine pump the doctors want me to get and you guys have the biggest and best info.

so if you don't mind that I can walk (when i' not in too much pain or when my muscles don't spasms too much and make me fall or need a walker)
I'd love to get some answers from people who have actually taken these drugs and had these surgeries and not from the White Coats who make money off me whether it works or not.

So, about me, I'm 5'2 and 100-115 (the 15lbs goes only to my curves, no back fat)
1. am I going to feel the implant in general but also when I move, bend?
2. can you it thru your skin (an outline) or for a thin person would it poke out of my back where if could be seen in a tight shirt? naked?
3. Does anyone know a site that has pictures-- I haven't found any?
4. someone talked about their body rejecting the implant-- is that rare?
a. I have a body piercing ( belly bottons are possers-- that's all I'm sayin). My body rejected it and I had to get it re-done. this was not a some shade booth at a street fair-- it was at one of the best place in NYC where you had to apprentice for 3 years as they pieced EVERYTHING-- I mean, things I don't even have. Everything, boys. I've didn't reject again and it's been 18 years-- does my rejecting the piercing give any odds to whether I'll reject the implant? (my doctor didn't know because he wasn't familiar with body art)

5. Once the pain is gone, do you still have to take other pain medications for break-thru pain? (I take 2 long-lasting, 2 break-thru, one muscle relaxer, and sleep medication)?
6. Scar tissue: I'm prone to it. I had 3 benign breast tumor removed and 2 years later, it felt like they grew back. The were scar tissue?
7. what complication can Scar tissue, leaking of the medication, and the implant itself cause to me, my spine, anything the medication drips on, etc?
8. Can scar tissue, the medication dripping outside the implant, or the implant moving make do Permenant damage and what kind?
9. can it make me paralized?
10. Can it make the pain worse?
11. If the implant works, do you just get your life back or are there steps: phyiscal therapy, you still have other parts of the disease, etc?

any pictures, good stories and horror stories would be greatly appreciated as the doctor said i could have children with this and by husband (not-legal because of loss of benefits we can't afford) want kids and the drugs I'm on make it seem selfish and dangerous.

also, I have truely been on EVERY drug you can think of. Plus, both parents have had broken disks surgeries, and just me, my parents, and husband have had over 20 surgies in the past 10 years. i have became the family/friends expert on pain mangement.

Anything you want researched-- ask me. that may sound strange coming from someone who just asked 10 questions, but I've found everything but the Pictures. I just don't trust the sources. the "good stories" come from doctors and phar sites and the "bad stories" come from lawyer or people moaning God didn't save them blogs.

I just want the truth from people who know what hell looks like and said, "sweats good for the pours"-- you guys I trust.

thank you for any help you can give me,
LadyDee

PS: I'm a horrible speller (yet was a professional proof-reader-- gotta love NYC!) forgive me for not spell checking as my break-through meds wore off and just writing this was a bit of a struggle.

[LadyDee]

Hello,

I've had over a 150 people look at this site and not one had left a message-- even if it was just to say "you're not paralized-- get off the site."

However, I believe we all take the same medication and are all labrats to the doctors who get paid tens of thousands of dollars per operation- even when the operation made you worse. Any other field would have to re-do their work for free or refund your money and pay for a contractor of your choice to fix their mistake.

I asked a bunch of questions because I respect this site. I still do. That's why I'm going to give you the research I've found, and maybe you'll believe me when I say I not some freak wanting pictures of scars and pain.

I know I asked If anyone had pictures of their morphine pumps or had a website to these pictures, but not to gawk.

I'm 95lbs and Bill from the Scar tissue link can't sleep in his back for more than 30 minutes after his implant. My doctor gave me a video to answer my questions (he didn't answer at the appointment) and the Video said "ask your doctor!"

I'm scared, like you. I have a living will-- like some of you. I'm fully disabled like some of you. I less physically disabled then some of you. and I'm more disabled then some of you. If that last statement pisses you off, you didn't see the ParaOlpmics or this week's NBC IRONSMAN where many Paraplegics competed in Hawaii in a swimming, biking, running competition while I missed my Birthday because the pain was too great to leave me bed.

Ignore my spelling, I'm not good at it and it hurts to type. (copy and past is easier)


So, about me, I'm 5'2 and 100-115 (the 15lbs goes only to my curves, no back fat)
1. am I going to feel the implant in general but also when I move, bend?
Depends on the case, Probably since you're thin, should get used to it.

2. can you it thru your skin (an outline) or for a thin person would it poke out of my back where if could be seen in a tight shirt? naked?
A doctor emailed me that it "can definitly be seen in thin people (outline) more than is heavier people). Depends on the clothes, some tight-fitting clothes will show the outline. Oh, it might be more than an outline in thin people-- it might look-llike its poking out of skin.

3. Does anyone know a site that has pictures-- I haven't found any?
No. But I found that on YOUTUBE you can find the Actually surgery, people talking about the surgery, and someone shows his Post-surgery scar with bad lighting, filming so you can see anything.

4. someone talked about their body rejecting the implant-- is that rare?
No stats.

a. I have a body piercing ( belly bottons are possers-- that's all I'm sayin). My body rejected it and I had to get it re-done. this was not a some shade booth at a street fair-- it was at one of the best place in NYC where you had to apprentice for 3 years as they pieced EVERYTHING-- I mean, things I don't even have. Everything, boys. I've didn't reject again and it's been 18 years-- does my rejecting the piercing give any odds to whether I'll reject the implant? (my doctor didn't know because he wasn't familiar with body art)

Piercing was titanium and implant is not. No Stats if there's a relationship between body rejecting a piercing and an implant. Implant is stitched or glued into place until body can USE scar tissued to hold in place. Some scar tissue is your friend.

My piercing, however, was just a needle going thru skin and then the hole held open with the Body Jewerly. The Body see this New Opening as a wound and the Jewerly as something caught in it-- like a splinter and pushed the Jewerly to the surface of skin. The second Piercing actually used the unsuccessful attempt's scar tissued to LOCK it implace.

5. Once the pain is gone, do you still have to take other pain medications for break-thru pain? (I take 2 long-lasting, 2 break-thru, one muscle relaxer, and sleep medication)?
Maybe. There's is both Oral medication that HAVE to be taken because they can be used by Pump. Oral medications you can Choose to take instead of using in pump or because you might need them as break-thru medication and it's harder to regulate them thru pump. Also, there a way of injecting Break-thru meds into the pump the way Diabetics inject a Heavier dose of insulin into this pumps on bad Sugar level days.

6. Scar tissue: I'm prone to it. I had 3 benign breast tumor removed and 2 years later, it felt like they grew back. The were scar tissue?
7. what complication can Scar tissue, leaking of the medication, and the implant itself cause to me, my spine, anything the medication drips on, etc?
See answer 5 for benefits. For negative, there's better links on this site like conversation with Bill on Scar Tissue thread.

8. Can scar tissue, the medication dripping outside the implant, or the implant moving make do Permenant damage and what kind?
This website would give the best answers but I can get a good read if any damage is individial and what the state are on damage. Hoever, there does seem to be many complications that should make this a last resort.

Also, I am personally concerned abut having this in NYC now before Flu season hits. We have a stupid illigal alien "don't ask, don't tell" policy and with so many death BEFORE FLU season and some people concerned about a Epidemic during Flu season (in the next two months when I planned to have surgery); the risk of catching this from visitors or patients seems higher in a Pro-illegal city or state.

(this comment is a condementation of security {I was in NYC during 911 and am only 2/3rd generation American on both sides}, the CDC, and Benefits illegals get while All Americans and Legal Immigrants pay for and have trouble getting themselves. And debate about hating minorities will not be read or participated by mean since I am one)

9. can it make me paralized?
No stats on this or risk of mengitisis or permentant muscle damage.


10. Can it make the pain worse?
For me, I can't imagine how. And if it did, I can't imagine it not be worth trying since I don't want to live this way anymore. But yes, it can make pain Worse. It can cause damages. You should be suspicious there are no stats on something Doctors claim is 35 years old. You shoud be suspicious that on the entire web we I can find anything from step-by-step instructions on Building a strawbale house to websites to are decidated to 100 yeard cast iron frying pans-- there are NO pictures of this Inserted in a Person's Body. There's Before and after Breast Augmentation Pictures-- But NO Pictres of a Person Back with this Implant every 3 months for 2 years at 3 body weights (skinny, medium, large) to give you an idea what the implant outline and surgical scars can look like. NONE.

Not even at the Company's websites. They're all pictures of divice in drawings of fake bodies to show how implants attaches or X-rays.
What the F$#k are these Doctors' tryng to hide. There's pictures of brain surgeries, cat surgeries, gross fetish stuff that warns you not to type in the word "implant" willy-nilly. Where are the 35 years of implants patients picutres? What does your back looks like after the pump has been replaced 3 times? if you're olive-skinned like me?

11. If the implant works, do you just get your life back or are there steps: phyiscal therapy, you still have other parts of the disease, etc?
Depends on the person. No one understands my disease. And you still have the disease. This takes away Pain and muscle spasms. Will it stop a fan from making me scream if it blows on skin? (My skin feels like a sandblaster is peeling my skin off is a fan is on me. It causes a huge expense in summer forcing me to use the Air-condition when I don't need to but I can't use a fan) Will this pump stop the fan pain? Maybe-- but maybe the fan pain will morph into something else. Itching or feeling like bugs are crawling on me or worse, in my skin like maggots. I don't know. I have over 40 syptoms that are strange and bizaar and have nothing to do with pain but stop me in my tracks. Right now, the pain is what's keeping me bedbound. I feeling like I'm walking on broken toes and spike in my heels.

My doctors told me not to expect to be able to go back to work the next day. I'd need months of adjusting the meds, physical therapy, and basically, they have no idea if this pump will work or how the illness will react to it.

So, do you get your life back? No stats.
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[Phyleva]

My hubby had a baclofen pump, the same type you are thinking of getting. It did leave a large bump in his abdomen, it looked like he had a hernia. He does have a scar on his back from the incision when the pump was installed and larger one now that he had to have it removed.
Be very careful with pumps and doctors promises!!!!! My husband almost died from baclofen withdrawal due to a pump malfunction!!! He had a 106 degree fever, his heart stopped 2 times and was in a coma for a week.
The pump is not to be taken lightly and is and should always be a last resort treatment in my opinion. Please beware!!! As with everything there are risks, just be sure this is a risk you are willing to take, it may work great for you or it may cost you your life.
I don't mean to scare you but that is what happened to us.

[megatrig]

Phyleva, on Jun 13 2009, 04:20 AM, said:

My hubby had a baclofen pump, the same type you are thinking of getting. It did leave a large bump in his abdomen, it looked like he had a hernia. He does have a scar on his back from the incision when the pump was installed and larger one now that he had to have it removed.
Be very careful with pumps and doctors promises!!!!! My husband almost died from baclofen withdrawal due to a pump malfunction!!! He had a 106 degree fever, his heart stopped 2 times and was in a coma for a week.
The pump is not to be taken lightly and is and should always be a last resort treatment in my opinion. Please beware!!! As with everything there are risks, just be sure this is a risk you are willing to take, it may work great for you or it may cost you your life.
I don't mean to scare you but that is what happened to us.

I think the reluctance to give advice is that the posters on here doen't want to give you bad advice as it were!

Pumps are/can be a great way forward. Unfotunately mine went dramatically wrong too....

Lots of people have great success with them.

A spinal doctor (generally) uses baclofen as this is the usual drug that most spinal injuries benifit from.

I recently spoke to a very well renowned Doctor who uses intrathecal pump delivery of drugs. He would be using perhaps bclofen and morphine .. and .. and .. xxxx .. other "stuff" depending on his judgement.

I go to see a Professor Rapael tomorrow. A speacialist in pain management who uses this method too. I'm terrified typing away as I need some solutions ...

Anyway my advice would be seek out the best person in the field of pain relief near you and go and talk to them.

Get a feel for them and think hard. Way up the pros and cons, etc.

Good luck ....

Lots of us do know just how mierable it all can get at times!

Hope that makes sense!

Cheers,

David

[LadyDee]

Hello,

thank you for all who wrote in. I understand no one to discourage someone else from trying things-- but the doctor gets paid if it works or down works. He gets paid to insert it and to removed it. So yes, I think he's a bit bias.

I want to hear your horry stories, along with you it kinda worked, but on 30-50%, and I absolutely want to hear VICTORY stories.

But the only way we can make and informed desicion is if people who had the surgeries and implants describe to us if they work and how they feel!!!

You might think of your negative story of "stopping me," not true-- if I want something, I'll get it. But maybe your story will make me ask questions and refuse to leave the office until I get an answer.

Maybe it will tell what kind of doctor I should be looking for, since we all get "glamored" by the promises.

Most important, the doctors have always used our shae of the scars they gave us while blaming us that it didn't work because it work on all their other patients when that might be
a. a flat-out lie
b. they only have 4 patients
c.They have 200 patients and we're all snowflakes with idfferent health problems, different medication requirements, and different "failures" so they, the doctors, have no right saying I have 200 patients that had your surgery because they didn't have my medication, they didn't have my illness, and they have no more in common with my surgery then the girl in the room having a c-section.

thank you and keep sharing. Good or bad, I'm learning & I'm only learning because of you!!!
LadyDee

[ClaraTaylor]

It might be worth you looking at www.butyoudontlooksick.com which is a website / forum for anyone suffering an "invisible illness" but has a huge area for Lupus / Fibro / CFS etc.....
There might be a few fellow Lupus sufferers who have had the implant who could offer you another side to the information.

Hope it helps.