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bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/4/2009 5:27 AM (GMT -7)   
This past Tuesday I had surgery to replace the battery in the pulse generator of my Spinal Cord Stimulator which is implanted in my low back just to the right of my spine.  It was my 23rd "back related" surgery and compared to some it was comparitively minor, but surgery is surgery, and I am dealing with a great deal of incision pain in addition to my normal everyday pain which seems to have been made worse I assume from them "fiddling around" right by the nerves that are damaged that are the cause of my everyday pain. 
 
My pain level had been a solid 9 - 10 for a couple of weeks leading up to the surgery which I attributed partly to the SCS not working, and I knew that I would feel even worse for a few days after the surgery, but the last 24 hours has been particularly bad.  We had severe thunderstorms here last night, plus yesterday was the first day that I tried to be up and around more than I was laying in bed, and now I am really suffering for it.  It is 7:45 a.m. and I have not had a wink of sleep and I am in so much pain I do not know what to do with myself.
 
I can not stay in any one position for more than a couple of minutes, and it has taken me over an hour to type and re-type this post because I am terribly distracted by the pain and my fingers just can't seem to find the right keys (which is sad because I taught typing and computer applications for 12 1/2 years and normally can type close to 100 words per minute), thank goodness for the backspace key!!
 
I just wanted to ask for a few words of encouragement as I know a lot of you have been where I am right now.  You'd think I'd be an old pro by this point, but I guess I am just very close to hitting rock bottom today and my husband had to take my oldest son for a tour of the college he has been accepted to for the fall to get his Bachelor's Degree, so he is 3 1/2 hours away and really has to keep his attention on what they are there for, so I do not want to call him to complain.  He knew I was up all night, but I did my best to make him think it was just bad insomnia and not this horrendous pain that kept me up all night. 
 
Unfortunately, all of my family disowned & deserted me years ago because they did not want to feel obligated to help take care of me as I recovered from my accident and subsequent reconstructive surgeries or help my husband take care of our 3 kids including a 2 1/2 month old baby; and as the years have gone on most of my friends have fallen by the wayside because it is not easy to be friends with someone that is in pain all of the time, and who has serious limitations because of that pain.
 
Thank you for taking the time to read my rambling.

Momcares
New Member


Date Joined Feb 2009
Total Posts : 16
   Posted 4/4/2009 7:19 AM (GMT -7)   
Hi-my daughter has had this type of surgery and it can be very painful-did they have to make a new pocket, if so that can be really painful? Hopefully they replaced the old battery with a new rechargeable one? Probably right now you can't even tell if the new battery is working and your stimulator is helping your initial pain-I am so hoping that it is working for you!! It hasn't been that long since your surgery and I pray the incision pain will subside soon. Not sleeping and the long night always makes the pain worse, try hard to get some sleep ( easy for me to say!)and take care. Momcares
My daughter has been in chronic pain for seven yrs after a work related injury that caused neuropathy pain in her thoracic vertebrae area. She has tried physical therapy, she has had 3 failed neural stimulators surgeries 2 which were implanted directly into her spine, morphine pain pump that was infected during implant -caused her to go septic and needed to be remove-took a year to heal.On Bipap w/ oyxgen. Doc has tried neurotin, lyrica, hydrocondone,methadone, percocet, etc. all with serious side effects, now on MS Contin 30mg 4x daily for pain and morphine 15mg for break through pain and proxac 40mg for depression, worker's comp wants her to try Suboxone-been through too much,not sure it won't cause severe adverse reactions and pain doc doesn't think it is a good idea. Tired of fighting it all. Momcares.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/4/2009 11:48 AM (GMT -7)   

bluejet2 I do hope you are feeling at least a little bit better by now! I really am sorry to hear that you are having so much pain, I know how much worse it can be without having some one there to help and share your pain with. It does sound like you are being the brave , stiff upper lip mom who is putting husband and family before your own needs! I commend you for that, but it also saddens me, because look at what you are going through! I will say a prayer for you and I do hope your pain will be easing up soon!

wishing you only the best

White Beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/4/2009 12:10 PM (GMT -7)   

Hi Momcares:

Thank you so much for your well wishes and your prayers, they really do mean a lot to me!

It sounds like your daughter and I have a lot in common.  I have had this surgery done and revised several times due to leads slipping out of place, too much scar tissue building up causing me to loose the sensation of the stimulation, as well as numerous battery changes - some due to infection (I got that MRSA, antibiotic resistant staph), but most because in order to get any relief from the SCS I have to have all of the settings as high as they go which has caused me to go through a battery in as little as 2 months. 

I have tried rounds leads, flat leads, surgical leads, non-rechargeable as well as rechargeable batteries, and although they did not have to make a new pocket this time, I have had that done several times, and they are running out of spots on my back to make new ones.  The next time that becomes necessary, they may have to move it to my stomach.  I have had a lot of people ask me why not just give up and I have had others accuse me of "enjoying surgery" - I know that there are some people in this world who probably do, but believe me I am not one of them - the pain I go through is bad enough, but the mental and emotional toll it takes on my husband and children each time is not something I would put them through unless I felt it was really necessary.

Does your daughter have an SCS now?  If so, does she have the rechargeable battery?  What does she think of it?  I tried it, but I did not like it at all.  The Medtronics rep. told me that I would only have to recharge it once every two weeks for about two hours and I'd be able to do it while I slept or I could strap it on with a belt and I could get up and move around do things.  I don't know if there was something wrong with my unit or what, but it took 17 hours to recharge and I had to sit perfectly still so that the recharging unit was perfectly placed over the battery or it would not charge. 

I went back to the non-rechargeable unit, but I still can not run the unit 24/7 the way I would like because as I said I kill a 5 -7 year battery in 2 months, so I have to save it for my worst days and turn it off as much as I can stand to.  Doing that, I was able to prolong the battey life to about 6 months.

I see that your daughter has tried the intrathical pump too, but had to be taken out, did they ever try again?  I, too, got an infection when mine was put in, but it didn't make it down to the unit.  I had to have 2 months of IV antibiotics, but things were OK except that the doctor put it in way too deep.  Instead of putting it just under the skin, he put it all the way down in my stomach and it was very difficult to fill, it would flip around, it was so free floating that I leaned over from a seated position to pick something up and it shot up and broke my rib!  Eventually it became such a nusiance that I found a wonderful new doctor who moved it, and he has been my neurosurgeon ever since.

I'm sorry to go on for so long, but I just wanted to say one more thing - I really admire how you stick by your daughter.  I know you will probably say that that is what any Mom would do, but I can tell you from experience that that is not always the case.  Please remember to take care of yourself too, because you won't be able to care for her if you do not take care of you.  If your daughter ever needs or wants someone to talk to that has a similar history to her own, I would be happy to chat with her. 

Thanks again!

 

 

 

 

 

 

 

 

  

 

 


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/4/2009 12:24 PM (GMT -7)   
Hi Whitebeard:

Thank you for your kind words and for the prayers! I slept for a little over an hour a little while ago and although it did nothing for the pain, it recharged me a little so that I could cope a little better.

I am really thankful that I found healingwell and people like you who really care about your fellow CPers. I hope that I can be there to give you a kind word and support when you are in need.

Thanks again!

Bluejet2`

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/4/2009 2:06 PM (GMT -7)   
Bluejet,
I'm not sure if you can see my posts yet, but I at least wanted to offer you a hug!

(((((((((((((bluejet))))))))))))))))))

And those people who think you enjoy surgery are out of their minds!

I hope you can get some relief today.

PaLady

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/4/2009 2:11 PM (GMT -7)   
ENJOY SURGERY!!!! I dont believe anyone would enjoy surgery. I've had so many I have lost count.

Bluejet i am praying for some relief for you
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/4/2009 4:41 PM (GMT -7)   
PAlady said...

Posted Today 2:06 PM (GMT -7)

Bluejet,
I'm not sure if you can see my posts yet, but I at least wanted to offer you a hug!

(((((((((((((bluejet))))))))))))))))))

And those people who think you enjoy surgery are out of their minds!

I hope you can get some relief today.

PaLady

Wife: Liz, the choice of a lifetime
Dogs: Koshka & Chomp


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/4/2009 5:15 PM (GMT -7)   
((((((Bluejet)))))))). You are quite right. Surgery, no matter how minor, is still surgery. It is still destructive to your body in multiple ways. I am sorry that you have had to go through this whole ordeal! I'm saying some prayers for you that you will heal quickly & that the new battery will provide better & longer lasting relief!

Skeye

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/4/2009 6:52 PM (GMT -7)   
Blue,
Welcome first of all, and secondly, I am sorry that you are in such pain today and the last few weeks. I know that it will take a few days for the surgical pain to die down some. Did your surgeon provide you with any extra meds to help keep the pain levels down while you heal from the incision? I sure hope so. Some sleep meds might help....
Anyway, I hope that your husband and son's trip went well and you are feeling better. Take care.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/4/2009 7:21 PM (GMT -7)   
Blue,

You have my best wishes for feeling better.

I haven't had surgery, but I know pain very well.

Soon I will be getting a pain pump. I guess I'll have surgery pain.

#10 pain is dreadful. I had it last night. I shopped Target for too long. Went
to a bunch of other stores. Lord, I was up for four hours.

I lay down on the bed when we got home a passed out from pain. I wasn't
much better today. Now I am better. Pain waxes and wanes. That's the only
good thing about it, I guess.

Oh, take care. I hope you feel better. I want to say magic words that will help
you. Oh, I so do wish that.

Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/4/2009 7:25 PM (GMT -7)   
Blue,

Did you have to be in the hospital for 2 months when you had the iv antibiotics.

Gotta go. Pain, you know.

Pamela

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/4/2009 7:25 PM (GMT -7)   
Tony - thanks for recopying my post!

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/5/2009 1:34 AM (GMT -7)   
Thank you all so much for your response to my cries for some encouragement and prayers to help me through when I feel like the pain is  taking me over the edge.  It helps to know that the words are coming from people who have "walked a mile in my shoes", although I am very sorry to know that you guys have suffered like this too!
 
The doctor did give me 15mgs of roxicodone to take on top of the 60mgs I already take every 3 hours, but it doesn't seem to be doing much.  If I still feel this bad on Monday, I will call him to see if he might be able to give me something else to try.
 
I have a friend who also suffers terribly with CP and he and his wife came over this evening to visit to help distract me, and it did help while they were here.  It is 4:15 a.m. and I am completely exhausted, so I am hoping that I will be able to sleep for a few hours tonight.
 
Lorie
 
P.S.  PAlady: I am able to see your posts again, which I appreciate very much - they look a little different than everyone else's (the text is   all in italics and it is in a box), but I am very happy you are back! 
 
        Pamela: I was in the hospital for about a week and then they put in a pic line (an IV that goes into an artery in your upper arm and a line is fed through the artery in your arm, through your chest, to the tip of your heart).  Unlike a regular IV which can only be left in for a few days, a pic line can be left in for a few months.  A nurse was sent to my house to teach us how to administer the IV antibiotics a couple of times a day, which we did for over 6 weeks.
 
 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 4/5/2009 2:40 PM (GMT -7)   

Hey Bluejet,

As usual I am a little late getting a post going. I sure hate to hear you are having such an awful time of things. You know if it doesn't lighten up by Mondy morning you really should call your dr and ask for him to return you call or speak with his nurse, if you trust her to speak with him on your behalf.

I don't know about you but, I have had many surgeries, more than I want to think about. I have ran of spare parts, they now have to put back if they take something out. I didn't find any of my surgeries fun, nor did I like them. None of them were done for the hell of it either lol. Any idiot that thinks surgery is a nice thing to do is shy of few cards from having a full deck in my opinion. I know alot of people that have had surgery and as far as I know it was not done for attention either. Gawd, the nerve of some people.

Hey, let us know how the trip to the college went with your son. You take good care of yourself and call that drs office. Susie



bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/6/2009 9:03 PM (GMT -7)   
Hi Susie:

Thank you for your post.

My son's trip went well - he's a little overwhelmed. The local community college where he got his Associates was 7 buildings and about 2 blocks long. The college he will be going to in August has 43 buildings! I can't imagine. He showed me some arial shots online and it looks like a town. He said there is a shuttle that will take you around the campus as well as to the local mall, shopping centers, etc. until 3:00 a.m. He has always been a mama's boy even though he tries show hard not to show it even to me! He always invited kids to our house, most of the time if he went to someone else's house for a sleepover, he'd call in the middle of the night "sick", because he didn't like to be away from home. It will be a big adjustment for him and us (my husband, his brothers, and I).

I really wanted to go with him for the tour, but it took them 3 weeks to figure out if they had a wheelchair or not to help get me around. I know it is not their responsibility to provide me with a wheelchair, but they must have a nurse's office and you would think they would know if they had one or not. He called repeatedly, and they finally called him back the day before the tour. As it turned out, my surgery got scheduled 4 days before, but if they had given him an answer sooner, I might have picked a different surgery date.

It would have been very difficult because it was a long trip and a long tour, but we might have gone up the day before and stayed in a hotel to make it easier on me.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 4/6/2009 9:22 PM (GMT -7)   
Hi BlueJet,

Oh my, yes, it will be an adjustment for him to make at the new school, but I am betting it will go alot quicker and smoother than he thinks. I am sure he is a little nervous moving a little farther away from home, but he will do just fine. It will be a good adventure for him. He probably is a little worried about leaving his mom, especially with her feeling rough right now too. Big adjustment for the entire family.

I am betting before long you are going to be feeling better. When that happens perhaps weekend trip can be planned. And you can go when there are not so many other parents visiting and take the place in. Rent you a wheelchair for a few to throw in the car and take off. Now there is something for you to look forward to.

My friend's son attended college at Southwest, which not too far from here about a 3-4 hour trip. We had some of the best times going and seeing her son. He loved dragging us around to all of the sites to see.

Did you by chance call your dr or are you feeling better.Let us know. Hugs, Susie

(this had a huge amount of blank space below it. got it out for you)

Post Edited By Moderator (Chutz) : 4/6/2009 11:10:40 PM (GMT-6)


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/6/2009 9:37 PM (GMT -7)   
Hi Susie:

I was feeling a tiny bit better today, so I decided to give it another day and see how I feel tomorrow. Thanks for asking.

I do look forward to getting to see where my son will spend his next 2 years - it's hard to believe that I have a son old enough to be in college (I married at 17 and had him at 19), but we will all adjust. I can't think about it without welling up with tears! I keep telling him that he's going to have to call me every night (HaHa).

Bluejet2
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