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Pain Sufferers - I Found Relief!


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#1 Peggy

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Posted 21 February 2011 - 03:49 PM

I have suffered with severe debilitating pain in my legs. I wear a pain patch as well as take pain pills and still suffer. So I have been seeing a Pain Management Doctor who recommended that I do a spinal procedure. So on Thursday I did a trial of this. So he inserted a needle into my spine and I have a remote that I can increase or decrease this massaging stimulation down my left leg. This is what I feel rather than the pain. With this 5 day trial there is no bending; no lifting over 5 lbs; and no putting my arms above my legs; and no baths or showers. He said when he usually goes to remove the trial his patients want it left in due to the change it made in their lives...........well I am one of them!! I hate that he's taking this out tomorrow. So I have decided to schedule the actual spinal surgery where the spinal surgeon will put 3 needles in that will be tied to my spine. One needle for each leg and one for my lower back. I have noticed that the trial needle has moved and the stimulation is in different places than the beginning. The recovery period for the actual surgery is 6-8 weeks and that seems to be the only downfall.

I haven't posted on this board for some time as I am rarely on the computer due to the pain taking so much out of me. However this board has always been such a huge wealth of information that has helped me in fighting this disease I wanted to share this with you.

I know what this disease does to all of us on a daily basis and I have a bracelet that says what I live by on a daily basis..."IT IS WHAT IT IS"...

Warm hugs,
Peggy

#2 Jeannie McClelland

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Posted 21 February 2011 - 07:15 PM

Peggy, thanks for posting this. Pain management is such a difficult topic and a difficult thing for our doctors to manage adequately. I don't think the surgery is something to be undertaken lightly and you would really want a good doctor, but it is wonderful to know that there is something out there besides drugs, drugs, and more drugs.

Let us know how you are getting on following the surgery and post more often when you are able. It's nice to hear from you.
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#3 Shelley Ensz

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Posted 22 February 2011 - 11:34 AM

Hi Peggy,

This is very interesting, and thank you for letting us know about this.

Do you have your surgery scheduled yet?
Warm Hugs,

Shelley Ensz
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#4 Amanda Thorpe

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Posted 22 February 2011 - 03:37 PM

Hello Peggy

What a relevant topic, I know of some sclerodermians currently struggling with pain...and I'm one of them! I am glad you have found something that has given you relief and more importantly the hope of future relief to come. :terrific:

Please let us know how you get on!

Take care.
Amanda Thorpe
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#5 janey

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Posted 23 February 2011 - 11:03 AM

Peggy,
It's so good to hear from you and to hear that you have found a solution to your neverending pain - although the long term solution sounds a little overwhelming. But I guess we've got to do what we've got to do. With as much pain as you have, I can certainly understand the desire to get your life back. DUH! My sister has pain similar to what you describe. She doesn't have scleroderma, but has many problems that causes her constant pain. I think I'll pass this one on to her.

Please let us know once you get the surgery scheduled. We want to keep track of how you are doing. Hopefully you'll have some residual effects from the trial and get a couple more painless days once they take the needles out.

Congratulations on FINALLY finding some relief. Thanks for sharing with us.
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#6 Buttons

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Posted 23 February 2011 - 11:51 AM

Peggy I'm so glad that you have at last found something that will ease your pain. I have to say it sounds very similar to my sacral nerve implant that I have for my bowel issues, I do know that the leaflet they gave me did say that it can help pain as well. I have a controller which I can increase or decrease and it can be programmed in a number of ways. When I first got it with the guidance of the technician we found a number of programmes that suited me. Some did seem to help with my lower back pain and you can feel the device working but after a few minutes you don't notice it.
It took me about 4 weeks to recover from the surgery, the worst bit was not being able to shower for 2 weeks until the wound had healed. That first shower after was absolute heaven! I just have to be careful not to over stretch incase it dislodges the electrodes but it is worth it.

Take Care

Buttons

#7 Robyn Sims

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Posted 24 February 2011 - 07:11 AM

Amazing what can be done for pain.

Thank you all for sharing and educating me yet again on the wonders of what medical technicians have invented.

We tend to only think of doctors, researchers and scientists, but there are wonderful inventors out there coming up with great ideas.

Good luck with your surgery. :emoticons-group-hug:

#8 notlettingo

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Posted 03 March 2011 - 12:47 AM

Wow, that's crazy~ I want to ask my Rheumatologist about that and maybe I could have that for my pain, (MCTD, etc) Please do keep us posted.

Best wishes to you with your surgery!

#9 Shelley Ensz

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Posted 04 March 2011 - 02:44 PM

Peggy, how did it go? Do you have surgery scheduled yet?
Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Kamlesh

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Posted 21 November 2011 - 01:23 PM

Hi Peggy,

I am scheduled to go through trial and if everything works out OK, final procedure next.

Can you please share your experience after the final procedure? What you can do or cannot do. How successful it is to relieve pain. If necessary, please send me private message. I am trying to find how effective are these devices for pain from autoimmune disease. I have spoken to Medtronic who manufactures these devices and they could not find any information.
Kind regards,

Kamlesh


#11 Amanda Thorpe

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Posted 21 November 2011 - 01:58 PM

Hello Kamlesh

Peggy talks about the outcome on the thread Nerve stimulator as treatment for digital ulcers. It may help you in the meantime until Peggy replies.

Take care.
Amanda Thorpe
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#12 Peggy

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Posted 25 November 2011 - 07:24 PM

An update for anyone in horrific pain. Please see a Pain Management specialist and ask about the Spinal Neurostimulator. These devices can help with pain for ANYWHERE from the neck down, whether it be the tip of your fingers, or your toes and anywhere in between.

I had the final surgery and on 2 occasions have met with the Boston Scientific engineers to change how and where my stimulators work. It is so amazing. The spinal surgeon put in 3 needles and actually tied them to my spine. He also took out a small little piece of my spine to insert the device and the battery running it is in a flap of skin above my right buttock. Well once the surgery is done the engineer sits with a computer and it connects to the device in your back. He then sends different sensations to different parts of your body that you can feel and then you tell them if it is good or bad; if you want it stronger. I have a remote with 5 different named settings that I can go to and each one is a different sensation. One may feel like tingling down my legs and back; one is a pulsating feeling; one is a kneadling type of feeling; etc. I can then turn this sensation up. They also within each of these have a setting for my back and for my legs so I can control those separately in strength. After the initial recovery period you go back to complete normal activity. The only suggestion is that they don't like you to have it on when you are driving as for instance mine goes down my legs and it can be a sensation that may affect your driving.

My pain is still bad and I can't imagine where I would be if I didn't have this. Even with this I was in bed all day today with terrible pain in my legs and lower back.

To also update on my disease as I haven't been on for quite some time............unfortunately the disease has really gone after me these last 6-9 months. It has gone through my digestive system and I no longer have any motility in my esophagus or stomach. On December 6th I am meeting with the doctors, and I will be finding out after all these tests they have done, if I am a candidate for the fundoplication surgery. If not then I will be looking at soft foods/ pureed foods and eventually a feeding tube. I have been in the hospital for a week after having so many reflux attacks that the GI cocktails that I took were way past the amount you can take so it meant an ER trip and then a long hospital stay. Now the food doesn't move out of my stomach and turns to bile and then starts up a nasty bout of bacterial overgrowth which requires antibiotics. I have this happening constantly which is unsettling on the amount of antibiotics I'm taking.

I am aspirating into my lungs which is what is so worriesome to my pulmonologist, rheumatologist doctor and gastro doctor. I lost a good friend to this disease 2 weeks ago whose disease mirrored mine 6 months ago. In the last 6 months it went through his digestive system and also the aspiration into his lungs gave him pneumonia and he wasn't able to fight that off and passed away. This news was extremely upsetting not only to me but to my poor husband.

So I hope that some of this information is of help to someone. I wish everyone the best and people afflicted with diseases like sclero and others are always in my thoughts. A huge warm hug,

Peggy

#13 rubydoo

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Posted 26 November 2011 - 03:55 AM

Dear Peggy
I am a newbie to this site and have never spoken to you before. I am so sorry to hear of your current problems, I can't imagine what thoughts and anxieties are going through your mind right now. I wanted to ask you what your original diagnosis was and how long ago?
I think you are obviously a brave and strong woman for getting through all that you have gone through so far and I hope your strength gets you through the next difficult few months. My thoughts will be with you and please let us know how you are getting if you have the time or energy! I have lost all my emoticons somehow so you will have to imagine this big bunch of flowers and warm hugs that I am sending to you.:)
Warmest wishes
Helen

#14 Amanda Thorpe

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Posted 26 November 2011 - 07:03 AM

Hello Peggy

I am so sorry that this awful disease is still pursuing you! Sometimes it just feels endless! Helen is right though, you are an amazing woman who has made it through a great deal and you are going to continue to do so, I insist. There, I said it so that's that.

It's so hard when we loose a friend with scleroderma, I lost a friend, have one seriously ill in hospital at present and another dear friend that I haven't been able to make contact with recently. I am very worried as she is on total parental nutrition (TPN) and has been very ill again lately. I have emailed and left messages, I am going to try and contact her again today.

Mind you I also have a lot of friend with scleroderma who are doing really well which just goes to show what a bizarre disease this is and how it really does affect everyone differently.

Take care and please do keep posting.
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#15 Joelf

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Posted 26 November 2011 - 07:37 AM

Hi Peggy,

Thanks for letting us have your update. I'm so sorry to hear how much your health has deteriorated and sad to learn about the awful gastrointestinal problems you're experiencing. I do hope that you will be able to have the Fundoplication surgery to help improve the quality of your life.

Helen and Amanda are right; you do have the strength to overcome the dreadful pain and symptoms of this disease.

I shall be thinking of you and hoping that there will be improvement for you soon. Here's the flowers :flowers: that Helen unfortunately couldn't send you and also a very large :emoticons-group-hug: from me!

My best wishes to you,

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#16 debonair susie

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Posted 26 November 2011 - 12:46 PM

Hi Peggy,

You are such a trooper! I cannot imagine how difficult this last while has been for you.

I truly wish you only the very best outcome with anything you must do to be as healthy
as you are possibly able.
Please know you are in my thoughts and I'm sending an abundance of :emoticon-hug: s your way.
Special Hugs,

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#17 Amanda Thorpe

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Posted 26 November 2011 - 03:34 PM

Hello All

I just found out that my seriously ill friend in hospital died there yesterday. My condolences to her husband and family.

Take care.
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#18 Kamlesh

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Posted 26 November 2011 - 08:03 PM

Hi Peggy,

Once you control acid reflux, your body heals itself. Acid reflux damages esophagus as well as lungs. For lungs to be damaged any fluid, acidic or not, damages them. I went over 220 degree or partial fundoplication in 2005 and my acid reflux score DeMeester score went down from 84 to 2 (normal is around 14 and I believe highest is 96). One drawback of surgery is food can only go one way, so in case of severe stomach pain (which has happened to me once or twice a year), you cannot just vomit out. So I am very careful what and how much I eat. Out of three surgeons, two rejected me because of scleroderma, one at UCSF agreed after very extensive testing.

Thank you for notes on Neurostimulator. I am scheduled to go through trial part soon, but with Medtronic device.
I will keep you posted.
Thanks
Kind regards,

Kamlesh


#19 miocean

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Posted 27 November 2011 - 08:27 AM

Peggy,
Please know that we are all thinking about you and wishing you the best. :flowers:

Kamlesh,
Good luck with the Medtronic device. :jump-for-joy:

Amanda,
I am sorry about your friend. :sorry:

To All,
Thank you for sharing the good and the bad of your experiences with scleroderma. The honesty and support found on this forum always amazes me. I don't know what I would do without you. You are the strongest people I know.

:emoticons-group-hug:
miocean
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#20 Amanda Thorpe

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Posted 27 November 2011 - 09:47 AM

I am so pleased to say that I have just spoken to my dear friend wit scleroderma and on TPN, she's been in hospital again but is now home and has finally put a stone in weight on! Even better she's coming for holiday dinner in December and we can't wait to see her! :happy-dance:

Take care.
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