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Riccardo
Regular Member


Date Joined Mar 2010
Total Posts : 36
   Posted 3/8/2010 7:21 PM (GMT -7)   
Hello everyone, and especially to PAlady who responded to my post.  I attempted to respond to her, but it appears I have responed to myself!!!!!!  Can someone please tell me how to use this?  I hope PAlady reads this.  Did I start a new conversation with myself?  Oh well, at least I am laughing.

Thanks for any help,
 
Ric

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/8/2010 9:31 PM (GMT -7)   
LOL! We can always use a good laugh!

At the bottom of the screen (after the last post in each thread) there's a box that says "Quick Reply". You can just type a reply in there, and his submit. If you want to have the icons and more print options, you can click where it says "post reply" and then you'll get a fancier reply box.

Hope this helps!

PaLady

Riccardo
Regular Member


Date Joined Mar 2010
Total Posts : 36
   Posted 3/9/2010 12:07 AM (GMT -7)   
Thanks so much. I already feel I have a friend through this. Have a wonderful day.

Ric

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13467
   Posted 3/9/2010 1:36 AM (GMT -7)   
Hey Ric sometimes laughter is the best medicine, if I couldn't laugh at myself some days I would not laugh at all, lol.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 3/9/2010 4:51 AM (GMT -7)   
Hi, Riccardo, just wanted to pop in to say welcome. I too have had lumbar & cervical fusions done. They were both successful in the doctors eyes because I fused but they never took all the pain away. Has your pain management doctor ever tried any injections? I am in the process of diagnostic injections for the facet joints pinching on the nerves. I've had great success so far with these and will have radio frequency abalation completed soon. Didn't know if this may be an option for you.

I do wish you luck with your trials!!
---Jag---
 
DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 3/9/2010 6:10 AM (GMT -7)   

Hi Ric,

I want to add my welcome to you.....alot of us here have had "successful fusions" that is, in the eye of the surgeons.  Only to be placed in a CP situation with our successful surgeries.

You have had so much to deal with, just know that we are all here for the same reason with different causes....BUT we all understand what you are going through. 

You will find support, empathy and lots of information from your HW family!!

Glad you found us!

XXOO
Patti


Riccardo
Regular Member


Date Joined Mar 2010
Total Posts : 36
   Posted 3/9/2010 7:23 PM (GMT -7)   
Thanks to all who responded to me. I got great news from my pain management doctor today: the trial implant of the neuro-stimulator really worked wonders for me, and two weeks from Friday, I am having one permanently implanted. Does anyone out there have one? It really did manage to turn the sharp pain into a mild tingling sensation, kind of like when you sit in one of those massage machines at the big box stores.

I am SO happy to know of this group and that so many people seem to be managing their pain so well.

Love to all

Ric

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/9/2010 8:17 PM (GMT -7)   
Hi Ric:

I wanted to add my welcome to HW. I have had a spinal cord stimulator for about 10 years, and an intrathecal pain pump for about 8. I'm so glad that your trial went so well. If I can answer any questions, I would be happy to. There are several others who have the SCS as well.

I am very glad that you found us and looking forward to getting to know you better.

Lorie

Riccardo
Regular Member


Date Joined Mar 2010
Total Posts : 36
   Posted 3/9/2010 9:47 PM (GMT -7)   
Dear Lorie:

Thanks so much for your reply. What can you tell me about the stimulator? I did the trial for 4 days and loved the stimulation and the freedom from pain. Of course, I hated all the nasty tape on my back and how cumbersome the wires were. But I can actually say I was pain free for those days, and as well, I didn't take as much oxycontin.

Saw the pain doctor today, and he advised that I continue taking the higher dose of oxy until further notice.

Do you think this is good advice?

Anything you can tell me about the stimulator would be appreciated. Such as, do you leave it on all the time or do you just use it for specific bouts of pain?

Can't wait to hear your thoughts.

Love

Ric

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/9/2010 10:19 PM (GMT -7)   
Hi Ric!

We all had to start at the beginning also and it took me a while to figure this place out too. I don't know what to tell you about the oxy, especially since I don't have an SCS. I do take oxy and percocet for pain control but mine is different than yours. Others will be by to share their experiences with your type of pain control. Always remember that we're not medical folks so all we CAN do is share what's happened to us. Did you know why your doctor wants you at an increased level of oxy? Is it just until they do a permanent SCS? Sorry, just my ignorance showing...lol

Chutzie
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/9/2010 10:58 PM (GMT -7)   
Hi Ric:

Well, first of all, I can promise you that the permanent implant is tape free other than a few steri-strips on your incisions, and no awkward wires and bulky device to carry around, lol.

I was in a very bad car accident in 1995, and have had a total of 23 back surgeries and I am left with severe nerve damage to the nerves that control my ability to walk. Early on I was told that they could sever the nerve and my pain would be relieved, but I would never walk again. As a mother of 3, that was not an option, and now I am told that because it has been several years and the surrounding nerves have a "memory", if they sever the nerve now, I would likely be in more pain, and never be able to walk again. I am a very complex case as in addition I have several other issues with my spine that all contribute to my very high pain levels.

So, my only other option in addition to pain medications, is to try and "desensatize" the nerve or interrupt the nerve messages to the brain which is what the SCS is designed to do.

For the first several years, I ran the SCS with all settings as high as they could go 24/7. The problem with that was I was going through what should have been a 5 - 7 year battery in as little as 2 months, and the battery change requires another surgery. They do now have the battery that is rechargeable from a device you where like a belt for so many hours every couple of weeks. I tried it, but because my battery usage is so high, I felt like I was connected to a wall plug like a lamp. I chose to go back to the non-rechargeable battery.

My neurosurgeon and I felt that changing the battery every 2 months was just not realistic, so I now try to use it only on my really bad days, which is still a couple of days a week, and as a result, I have stretched the battery life to about 6 - 8 months.

I am one of those people that if anything can go wrong, it will, & I have had issues over the years with leads slipping out of place, a build up of scar tissue between the lead and the dura which caused me to loose the "tingling" sensation completely, as well as a bad bout with MRSA (anti-biotic resistant staph) which necessitated revision of the device, or with the MRSA the SCS had to be taken out altogether until I was infection free for 6 months and then it was reimplanted.

I am not telling you this to scare you away from the SCS, in fact, what I am trying to say is that despite the problems I have had (none of which were because of the device malfunctioning), I would never want to be without it. For me, the SCS along with the intrathecal pain pump and my children are the only reason I'm still here today.

I don't know if I answered your questions well or not, but please feel free to ask away if you have anything else you would like to know. There are a few others on this forum that have them as well, or have gone through the trial and are awaiting the permanent implant and some who have decided against it, and I'm sure they will be around to give you their thoughts as well. I sincerely hope that I have not scared you in any way - I just believe in being totally honest about my experience so that you have an accurate description to go on.

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/9/2010 11:08 PM (GMT -7)   
Hello again:

I forgot to answer your question about the Oxy, I do think you should follow your doctors advice. Most likely, you will have to take some pain medications even after the permanent implant of the SCS. Please don't get caught up worrying about what other people think about what you have to do to manage your pain. They have no idea what we deal with on a daily basis, and they couldn't imagine it if they tried. As several people here have told you already being dependent and being "addicted" are two totally different things.

I know people mean well, but sometimes, I think we give out too much information about ourselves, which leaves us open targets for thier opinions. Maybe it would be best not to share with others what medications you are taking.

Take care,
Lorie

Riccardo
Regular Member


Date Joined Mar 2010
Total Posts : 36
   Posted 3/10/2010 12:25 AM (GMT -7)   
What fabulous advice from all you dear people. The best is Lorie's telling me not to worry so much about what others think about me. All my life that has been a problem, and only now, at a (VERY YOUNG!!!!) 63, do I finally believe that. in fact, it is my best friend, who doesn't take as much as an aspirin, who is so worried that I will become a full-fledged addict like you see in the movies. He is a dear, but doesn't have a clue as to what kind of pain I am in on a daily basis. I don't say that to malign him, however, because he is a wonderful person who brings much joy to my life.

I can't tell you how much all of your good support means to me. You know, I come to the computer in pain, read your posts, start typing, and before I know it, no pain!!!!

One of you recently said that there is a lot to the attitude angle of all of this, and I am sure you are correct. Pain is pain, but how we handle it is the answer.

I would like to share a poem with you written by the founder of the 4-Seasons Hotel Chain:

The longer you live
the more you wil realize
the impact of attitude on life.
Attitude is more important than facts.
It is more important than the past
than education
than money
than circumstances
than failures
than successes
than what other people think or say or do.

...

The remarkable thing is we have a choice
each and every day
regarding the attitude we will embrance for that day.

Food for thought.

Love to you all.

Ric

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/10/2010 2:19 AM (GMT -7)   
Ric,
Thanks for sharing that. And you know in many ways I think that's the secret to managing pain. Notice I said "managing" and not "curing", although I'm thrilled for every person whose pain can be permanently cured. They're probably not posting here, and off living a "normal" life. But those of us here have to learn - no, first we have to decide if we're going to let pain manage us, or vice versa.

It's not an easy transition. Heaven knows I'm still working at it (at age 60, although in all honestly I feel more like 80, at least physically). I think it's a day to day basis, one day at a time; sometimes one moment at a time. Accepting that while we may not be able to control whether or not we have pain, we can control how we view it, and the choices we make to manage it.

And medications are part of that. There is a link in the CP101 thread (the first topic on the CP forum page) that goes to an article that helps explain the difference between dependence (which is the physical aspect of how our bodies adapt to a given substance - and that's not just narcotics, it's true with lots of substances), tolerance, and addiction. This is a thoughtful piece written by a combination of doctors who are specialists in Addiction Medicine and also Pain Management. If you read it and give it to your friend, it may help. There's a lot of misinformation about this, including among doctors, let alone among the general public (which includes us and our family/friends). So learning that only a small percentage of those who take their meds as prescribed for CP will become addicts is important. And that often has to do with genetics, or the fact a person has had a history of addiction in the past. The main thing is taking our meds as prescribed, and being willing to work with our doctors when those meds need changing or adjusting. And we need to do that in order to have some quality of life.

So glad you joined us!

PaLady

Riccardo
Regular Member


Date Joined Mar 2010
Total Posts : 36
   Posted 3/10/2010 1:27 PM (GMT -7)   
Dear Anniedaze:

I really, honestly feel for you and hope that your pain can subside quickly. I certainly know how something like "attitude" can just seem like so much bullcrap when you are in pain and when you just can't seem to focus on anything else.

Love to you and feel better. Is this something new or something which is ongoing??

Love

Ric

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/10/2010 1:33 PM (GMT -7)   
Ric,
I'm glad you said that. While attitude shifts can help us, there are days when we're in no mood to think about that stuff! Sometimes there are periods of time where a shift is attitude is not priority 1; getting decent pain management has to happen first. Then we can decide how to manage the rest of our lives.

So I'm glad you said that to anniedaze.

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/10/2010 4:08 PM (GMT -7)   
I just wanted to stop by and say hello to Riccardo.
Seems like you'll be a nice asset around here to help out with your experiences, I hope the neuro stim will give you relief.
keep us posted as to when your surgery is for the neuro stim...
((((((((((((((((((((((((((((((((((((((((riccardo))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 3/12/2010 12:26 PM (GMT -7)   
Yes Welcome Ricardo , you've found the best site possible for commiserating with like others and getting advice and empathy .This site is a godsend , all welcome to you friend.
HIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment  .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment              .Medecines - Oxycontin , percocet ,  Celelbrex , lasix .

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