To Bluejet 2 and need help with anger management

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Momcares
New Member


Date Joined Feb 2009
Total Posts : 16
   Posted 4/7/2009 7:06 AM (GMT -7)   
Hi-again, hope you are feeling a little better today-will try to answer some of your questions - I wish it was easier for my daughter to type but every since her last stimulator surgery,
she has developed tremors in her hands-I've tried to talk her into joining forums like this one and she does read them but doesn't respond or ask questions-she hates writing or typing
and can't do either for very long.
My daughter's chronic pain is caused by a work related injury in 2002 that compressed her thoracic vertebrae (T-7&8) and she has neuropathy pain between her should blades,up and
down her arms, in her ribcage and chest.
At its worse, she cannot take deep breaths and feels has though she is having an heart attack-this is her 10 pain and since her injury she has never been below a 5 (this only happened
when her pain pump was working well).
She still has her stimulator and rechargeable battery-but  it only works on the left side-she has an inward curvature caused by implanting the leads by laminectomy twice and the last
time he couldn't get the right lead to go where her pain is on the right side, too much scar tissue inside and not enough tissue left around the scar. Her first battery was not rechargeable
and it failed after her first dorsal leads migrated and within six months after her first laminectomy implantation. After replacing that battery, the workers compensation insurance
carrier threatened the doctor that if she used it too much(like you need too) they would not replace it so she was only to use it 8-10 hours a day and he put her on methadone for break
through pain and she went back to work 4 hours daily (before this surgery she had tried to work full time). Her leads broke within  a year and it took 8 mos to get the w/c insurance to
pay for another surgery, that was when they implanted the rechargeable battery. What so sad about this is although she could use this battery more-the leads only worked on the left side
and her right side is where most of her pain is, that is when he recommended a pain pump. It took from February 06 to October 06 to get them to approve the pump-she couldn't work at
all during that time. She had the pump implanted in Oct 06 , the incision would not heal and then the infection went rampide in May 07, they fought it all summer long until in Oct 07
when they had it to remove it.
 I was reading you answer to Pamela about the pic-line and I can't believe you were able administer the antibiotics at home-I'm not a wimp-but that would scare me- at first when my
daughter's pump became infected she had a pic-line and had go to the nearest hospital(50 miles round trip) twice a day to have antibiotic treatments-I guess what scared me the most
was they had to flush the line with heparin(sp?) and I didn't know if it was making her blood too thin-I guess that was a mute worry because within a month the staph aureous infection
spread and she went septic. They put her in hospital right away and gave her straight pencillin-guess what, she was allergic to it-after 32 years-I didn't know my own daughter was
allergic to pencillin! It was awful-they couldn't tell if it was the infection or the allergic reaction that caused her lungs start to feel with water and her heart to start to enlarge-after 8
days of respiratory treatments and other antibiotic treatments, they thought they had it under control and let her come home BUT before they let her go they gave her a roscephin
treatment-because it was a stronger antibiotic and she would only have to come back once a day for the treatment. The  next day she was broke out far worse than from the pencillin-it
was 4th of July-and I had to take to the ER anyway for her antibiotic treatment-she was admitted again into the hospital-when we got her home her skin started to peel off all over-
bottoms of her feet, her face, her back, everywhere, she was so miserable. She also started to lose her hair.  A couple of weeks later-she was admitted again because her O2 level was
only 77, this time she came home with oxygen 24/7 and only oral antibiotics since they thought again the infection was under control-it wasn't- it flaired up again and went into her
lymph glands. We shouldn't have waited so long to have the pump removed but the doc and we knew that workers comp would give us a hard time about a new one and it had helped her
pain alot.  Anyway they removed it that October-since the pocket was infected too it had to be healed from the inside out . The incision was 4" long and 3 1/2" deep-I had to pack it with
gauze and dakins solution 3x daily-that's when she started on MS contin.  Doc also tried lyrica but it caused extreme upper leg pain and she gained about 18lbs of fluid. It took about
mos to heal the pocket but before it was we found out the catheder the doc left in was infected too. That infection was close to spinal meningitis-caused her severe pain in her lower
back and her legs-she was also loosing the use of her legs, she was falling alot and couldn't get out of a chair or bed on her own, also was having double vision. She was so sick,
vomiting and in so much pain-in the hospital they were giving her IV dilaudin, IV phenegrea and IV reglan, also had a fentyal patch on her. My grandson (her 13yr son was sick) so I
couldn't get into see her one day-but the next day when I saw her everything had been stopped because all of it had put her into a physchotic episode-she was seeing things and she didn't
know where she was, it took her 3 days to completely come out of it!! BAD! There was a bad risk for surgery at that time so back on Levaquin and bactrim antibiotics and they didn't 
take the catheder until 2 months later. It took about 3 mos or so to heal that wound! Since she had so many antibiotics, doc gave her a medicine, sorry can't remember the name, but it
was supposed put the good bacteria back into her system-guess what- another allergic reaction! Not as bad but bad enough! Right now she is just trying to cope without any extreme
measures, her legs are getting stronger and she is trying to manage her pain with what she is taking now.  With what she went through she is TERRIFIED of the Suboxone treatment (and
her pain doc doesn't want her to have it), we don't know and THEY DON'T KNOW how it will affect her!!The pain doc wants to try another stimulator but they aren't listening to him
either. The workers comp laws are so bad in Kansas that they have taken away her monetary benefits until she submits to the suboxone treatment or we get before a judge, more stress
that she doesn't need.
She still has her stimulator and rechargeable battery-it is definitely a hassle to recharge-you're right you have to get it just right on spot to start it, and the belt has be tightened a lot-she
can only stand it for about 4-6 hours, so of course that means she has to charge it more often maybe at the very least every 2 weeks.
I'm sorry this is so long-but sometimes it helps me to put it all in perspective-I go to a counselor every two weeks, just so I can keep my anger under control-I need to-because it
doesn't help anyone for me to go off on all the doctors and lawyers. It's hard not be to be looked at like an overprotective mom, but half the people I talk to don't believe how badly my
daughter has been treated (sound familiar?) or don't believe the pain she is in!!!!
I have been trying to figure out to shorten this, but just feel the need to post it all.  Momcares

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 4/7/2009 9:32 AM (GMT -7)   
Hi Momcares,
What a nightmare! Your poor Daughter, I can't believe all she and you have had to put up with. Who wants her to take Suboxone and why? I'm sorry if I missed something but if her pain Doc doesn't think she should, who is telling her to and why? I'm so sorry to her all she has been through, you must be a Saint to have kept your temper so far! I think you should get Mom of the Year for all you have done for your poor Daughter in light of all the bad luck ( and abuse!) she has had. I will pray for both of you. I truely hope ssssshe finds some relief in the near future and stops getting the runaround from the powers that be. It'a a discrase what's happened to her so far!
Hang in there!
Your Friend,
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections every 2weeks . 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on the aircraft carrier USS John Stennis in port in Japan and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. I am one proud PaPa! 


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/7/2009 2:02 PM (GMT -7)   

Hi Momcares,

I am sooo sorry for all that your daughter and your family have been through and I hope that I did not make things worse by making you rehash the whole thing.  If I did, I am very sorry.  If though it makes you feel better by talking about it, I am very willing to listen anytime you need to vent.

As I said, I, too, went through an infection when my pump was implanted, but I went through an even worse one with my spinal cord stimulator about 2 years ago.  I had taken a fall which caused one of the leads to slip out of place and as a result the stimulation was not covering the right areas anymore.  Because I go through batteries so quickly, my neurosurgeon decided to wait until it was time for a new one to address the lead.  When that time came, the rechargeable battery had just come out and he felt that I should make the switch to that model which required 3 separate incisions because the old nonrechargeable battery was much larger and the new rechargeable battery would float around too much in the old pocket making it more difficult to charge. 

I had the surgery done and for the first 10 days, everything seemed to be OK.  Immediately following my stitches being removed, the incision along my spine and the one for the new pocket started draining.  At first it was just clear fluid, but within a day or two it started turning bloody, and then got really gross (I'll spare you the nasty details), and I developed the lesion one the one by my spine that looked like a big, fat, ugly worm.  We called the doctor, but it was a weekend and my doctor was not on call, plus their office is a 2 1/2 hour drive one way, so his partner decided to just put me on a strong antibiotic.

We were taking pictures of the lesion every day to make sure it was getting smaller (and it was), but the drainage continued, and just when the lesion was about 60% gone, I developed a bump just above it that was so tender, even my shirt brushing against it hurt.  The next day, where the bump was there was a hole, and what we thought was a stitch was protruding out through it, and when my husband was trying to clean the incision for the pocket, there was an area that he thought was a collection of puss, but he could not clean it away.  To make a long story short, what we thought was a stitch was the lead wires making there way back out the incision, and what we thought was a collection of puss was the actual generator (it is encased in white plastic) making it's way back out through the incision.  Within hours, I was back in the operating room having everything taken out.  The battery pocket was so infected, it had actually burned an impression of the generator on the inside of the skin. 

They took all kinds of cultures and bloodwork, and I was put on IV antibiotics, and I had to be infection free for 6 months before they would try to put it back in again.  The cultures showed that it was MRSA (antibiotic resistant staph) that I most likely picked up in the hospital.  In order to put it back in, there was too much scar tissue to go from my lower spine up, so I had to have a laminectomy and a lot of bone removed and they went from my mid-back, down. 

I'm sorry that on top of everything else you have to deal with Workman's Comp., I know that every state is different, but they are always difficult to deal with.  I'm sure that a lot of it is because there are so many undeserving people getting these benefits, but there has to be a way to make things easier for the people that are so obviously deserving as your daughter is.  Plus, it is so rediculous that Workman's Comp. would insist on any particular treatment, they are not doctors, and even if they were, they are not your daughter's doctor!  That makes me really angry!!!  It's got to make you fighting mad!!!

I had problems with Lyrica too, I put on 75lbs in 3 months, that was over 2 years ago and I'm still fighting to take it back off.  I've been fighting a weight issue all my life, but that was downright scarey - I had no idea what was causing the weight gain - I was down to eating 2 bowls of cereal a day with a little fruit on it, and I still kept getting bigger and bigger, and of course the doctor's didn't believe me when I told them I was barely eating anything, even though my husband was there to back me up.  I was thinking of changing a new primary care physician, and went for 1 visit with someone that was recommended to me and I told him about the weight gain and he was the one who suggested that it could be the Lyrica. 

He subsequently almost overdosed me when I was admitted to the hospital when my pain was out of control by trying to double my dosage of dilaudid that I get through my pump.  He knew nothing about pumps (which no doctors around where I live do - I travel 2 hours each way to see my PM, too).  Of course, the hospital doesn't have the device needed to do the increase, so they called my home nurse to come to the hospital and do it, and agency she works for called my PM to tell him about it, and he called my husband frantic telling him to get to the hospital immediately because they were going to kill me if they did that.  They had already made the change, but 2 hours later the nurse was back to change the dosage back and the amount I got in that 2 hours wasn't enough to do any great harm.

Obviously I never went back to him again!

I am very sorry that my post has gone on so long, I just wanted to let you know that you are not alone!  Feel free to call on me anytime you need a friend, and I will be thinking about you and your family and I pray that the doctor's find something that will ease your daughters pain without terrible side effects!  How does her son deal with all of this?  It must be scarey for him.  I have 3 boys too, and it is hard on them too.

Bluejet2  (Lorie)


Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 4/7/2009 4:00 PM (GMT -7)   
Hi Momcares:

I'm so sorry for everything your daughter is dealing with. I can relate in some ways, I think. I am 29 and have had chronic pain since I was 16. A bunch of surgeries and nothing helped (back and leg pain). I manage the pain with methadone and morphine and a few other meds. Anyway, I had a med I was using but it caused me to develop a really serious heart condition so I had to come off of that med asap in Feb. 2008 to get rid of the problem. Since then, my pain has been really bad so I had a stimulator implanted on 1/16. It's rechargeable, like your daughter's. I completely understand only being able to stand recharging for 4-6 hours....

I wanted to tell you that I have a blog about living with chronic pain and living with a neurostimulator. I'm not sure if that's something your daughter would be interested in reading but if she is..the blog is called Chronic Stimulation and the URL is:

http://chronicstimulation.blogspot.com/

I just want your daughter to know that she isn't alone.

I really feel for you..you sound like an amazing mom..taking the time to post on here and get feedback for your daughter. And your poor daughter has been through so, so much. What a trooper she must be. Gosh..you must have been scared to death seeing her deal with those infections and..it made me want to cry when I read she was losing her hair.

I understand how you could feel anger...and wonder how could this happen to your daughter. My mom wonders that often and she always says she just wishes she could take away the pain. But just know that your support probably means so much to your daughter. And, you know what? Unfortunately..there isn't much you can do beyond support her and be her friend and just be her mom...which it sounds like you are doing a great job of.

Hugs,
Danimal

PS-how did your daughter's leads break??

Momcares
New Member


Date Joined Feb 2009
Total Posts : 16
   Posted 4/8/2009 1:35 PM (GMT -7)   
Hi, all. Thanks so much for your prayers and support.   I got to thinking later that I shouldn't have went into the awful details because I don't want anyone to be scared off and not accept
any of these  pain treatments because of the terrible time my daughter has had, all are you are individuals and what works for one may not work for another..it is so easy for me to vent
because I am not suffering 1/10th of what you all are going through and I feel very privileged that you are listening to me at all! One thing else my daughter has a name and I need to call
her by it and I feel safe enough here to do so. My daughter's name is Dana and she has been a fighter all her life, from the very start actually-she has a twin brother, they were premature
and she only weighed 4lbs 4oz when she was born and had to be medivac to KU Med Ctr rightaway-growing up with  2 brothers she competed against them and if they said she didn't
need to do something just because "your a girl" reasoning, you better believe it was the first thing she did!!!
Hey Pete, it is the workers compensation insurance carrier and their doctors that want Dana to go on this suboxone treatment. Suboxone is a detox drug with a lower grade pain killer in
it that supposely does not attach to the brain receptors like other opioids do. The concept for using it for pain management is that strong opioids make you more sensitive to your pain-
its called opioid induced  hyperalgesia-problem is the manufacturer states: "Patients with a clinical need for analgesia should not be transferred to a SUBOXONE regimen".
SUBOXONE is not indicated for pain management,  therefore the FDA has not endorsed it either(but is not illegal for doctors to go off label and prescribe it). In real life it has several
adverse side affects just like any other opioid (with all Dana has gone through-it just scares me and her both) And if it doesn't help the pain, you cannot take any other of opioid
painkillers along with it because it has naloxone in it that will put you back in severe withdrawals.  In Kansas the workers compensation insurance carrier can send you to any doctor
they choose and if you don't go they can cut off your monetary benefits until the judge decides one way or another (this would be okay if you are independently wealthy otherwise it is
just plain blackmail!) It usually takes about 2 mos to get a hearing so you go further in debt until then.  I am a retired government employee worked for the Army for 25 years-I learned
rightaway in my job keeping my mouth shut didn't get me anywhere-I supervised soldiers that really resented this female civilian telling them what to do-but after a while they knew they
couldn't sweet talk me out of anything, but if they did their job, I was fair, I knew my job and I may be a "B"- but they could count on me. (I don't think they ever knew how much I adored
most of them and the job they do and how proud I am of them.) So,there is no way I'm a SAINT--you definitely can not be a Saint-and think some of the thoughts I have about these
doctors and lawyers!! nono I pray a lot that the Lord will keep one hand on my shoulder and one hand over my mouth, but sometimes it might be better if HE covers both HIS ears! But to be
honest it saddens me that I let my  anger get in the way of my relationship with HIM.  One thing more-you bet you should be proud of your sons tongue not enough of that going on-give them a
big OOAH! for me! (whoops, that's Army, oh, well you know what I mean!)
 
Hi, Lori.  I showed Dana all of you guys post -it meant a lot because all during her infection they were trying to prove that she somehow got the infection on her own, we knew
differently but it always leaves the impression that you did something wrong. The very good infectious disease doctor(hired by workers comp), when I ask whether or not Dana could
have caused this infection, asked Dana jokingly whether she had gone out and rolled in the mud right after surgery-then he said he didn't even think that if she had it would have caused
it! His opinion that it was infected at implant and when they sent her to plastic surgeon to debried the incision it just kept the infection in longer.  What you have described sounds so
much like Dana's infection -firely red, seeping, swelling and hot pain-and what I thought was a stitch in the hole in her back was the anchor of the catheder! You don't have to spare me
the details-I know exactly what you're talking about!  I know how terrible it was for you-and still is, but you have never given up-the laminectomy implantation surgeries are terrible, so
very painful -but if people knew how much pain you all go through daily and how much you are willing to go through just to feel a little normal they would understand it better.  And not
being the Saint, Pete thinks I am-I have wished that pain on several doctors, lawyers and other narrowed minded people more times than I want to admit too. mad (Sorry, Pete-your a good
guy & I appreciate it-but it just ain't so!) Workers compensation fraud by injured workers is kind of like if you take prescription opioids for pain management you are a drug addict,
your not and you don't get rich by filing a claim, but you have to do both! Private health insurance carriers rarely take care of injuries caused at work-I told a lawyer that if I got injured
on the job I'd lie and tell my insurance company it happened at home--he told me clearly that that would be flat out fraud punished by a felony conviction-another time my mouth got
me in trouble-but I still think I would have taken the chance!!  You are not a drug addict for taking very much needed  pain medication, you don't "love" the surgeries you need to manage
your pain and there are more workers compensation frauds conducted by the employers and insurance carriers in Kansas than there are injured worker fraud. According to the Kansas
Division of Workers Compensation, in FY 2008 there was only one report of a worker receiving temporary total or permanent disability benefits to which they were not entitled. But
there were 499 reports of cases relating to the employer’s duty to report accidents; 213 reports of failing to maintain the required workers compensation coverage; 6 reports of
refusing to pay an order awarding compensation; 5 reports of collecting premiums from employees for workers compensation coverage in violation of the act; 6 reports of failure to
confirm medical compensation benefits; and 6 reports of refusing to pay compensation as and when due. There were a total of 55 reports where the fraudulent or abusive practice was
not specified or it wasn’t clear from the Division’s report whether the wrongdoer was a worker, insurance company, or employer. If I could find the same stats on how many chronic
pain patients are drug addicts I would post it in every ER in the U.S.!! Sorry  just venting I NEED A SOAP BOX DON'T I?? Thanks for asking about my grandson, he's a good kid and
tries so much to help his mom-you can't hide too much from him(not that I think you should) he's a pretty smart kid-what he doesn't know he'll find out. He has been the only one that
has kept his mom going at times and I'm so very proud of him.  Your sons sound great Lori so I know you have been a great Mom-I remember when my oldest went to college, I cried
like he was in the first grade again.
 
Hi, Danimal,
Thanks for your response too. I hate it that you have had to go through so much at such a young age-I sneaked a look at your blog-and I am so proud of you for all of your
accomplishments, I know your Mom is too!  I gave the address to Dana and I am sure she will get some benefit from it. Its very hard for me or your Mom to see their kids in any type of
pain but it is the hardest when you just can't fix it and being there is just not enough at times-everything you do or say  just seems so empty!  Dana's leads broke because as the doc
explained to me, he had to put them in a very active part of her body. Just a little higher and centered between her shoulders, your arms are aways moving, you hold your head up and turn
it side to side, etc.  Of course, they(workers comp) sent her back to work as soon as she was healed from the surgery-just as the did with the dorsal leads that never had the chance to
scar in so they migrated.  They just don't have a clue.
Gee this is another long one-please know that I am  very privileged to be accepted in this forum-but if I get to be a "pain" (no pun intended) or I say anything wrong, please let me know!
Momcares (Jan)

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/8/2009 8:06 PM (GMT -7)   
Hi Jan:

I just have to say again what a great Mom you are, and there is no shame in fighting for your daughter! I once had a doctor tell me to give my 3 year old son tylenol after my oldest son had broken his jaw with a baseball bat (my son had walked up behind his brother as he was bringing the bat back to swing) and I told the doctor that I would like to break his jaw with a baseball bat and see him only take tylenol for the pain (I would have been happy with tylenol if it was appropriate for the injury, but it was not!). I begged him to call our pediatrician, but the arrogant S.O.B. didn't want to take the time or be told by someone else what to do, so he wrote a script for tylenol w/codeine but didn't put a dosage on it and in m haste to get to the pharmacy that was closing in 15 minutes, I didn't notice it and when the pharmacy tried to call him, he wouldn't take the call, so my son had to suffer all night until the pharmacy opened in the morning and my pediatrican called something in.

I am sorry for the treatment or should I say the MIStreatment your daughter has received, and I understand your daughter feeling like her son is the only thing that keeps her going sometimes. I have felt many times that my children are my last source of strength. I am working on looking to The Man upstairs for strength, but we'll just say that that is a work in progress.

I am happy we both have found this site and that we can support each other.

Lorie

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/8/2009 8:44 PM (GMT -7)   

Hi again Jan:

I just wanted to let you know that I am a twin too, so your daughter and I have even more in common! yeah  I have an identical twin sister.

Lorie

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