[zookester]

Hello all,

I wanted to share a recent experience in hopes that it will offer some hope in times where hope is hard to find.

A few of you knew that I was recommended to go through a series of injections into the damaged area of my nerves that caused my CRPS II/Causalgia. The goal of the injections was try to calm those injured nerves and slow the progression of the CRPS, which was very rapidly spreading. I had my first one on Monday and though it did provide instant relief it only lasted for 18 minutes... ugh that was a big let down after driving just under 3 hours to get to the appointment. Another let down was that I didn't realize the injections this doctor was giving me was the same as ones I already been given almost daily right after this all began.

Bummed but still willing to try a few more just in case.. however, the letdown brought me back to research, looking at case reports, studies and surgical outcomes of others who developed CRPS after the surgery I had. It was then that I stumbled upon a case report I hadn't seen before. It was a case report about a young woman who had achieved 10 years of amazing pain control after a surgical procedure left her with CRPS II. What was most amazing to me was that though she had surgery for a different reason the surgical area was the same as mine and we had at least one of the same nerves affected, almost identical symptoms and she had also (like me) had and SCS that helped just not enough. She went from a pain score of 8-9 down to a 2.. for at least 10 years!! So.. I took this case report to my doctor, who read it with great interest and then said "YES, this would be very viable option for you" he went on to explain he had provided this to many of his cancer patients with great success. There is a trial injection I need to have prior to this new procedure but, they are already working on the insurance approval .. so it could happen as early as 2 weeks! OMG I am so excited about this possibility!! Like with anything there are some risks but, I am hopeful and thankful that there is another option and one that could potentially give me much of my life back. I will post the case report below.

Part of my reason for sharing is that it doesn't hurt to bring case reports and other medical studies to the attention of our doctors. This is the second time I've done this and both times it was received and I benefited from it. Sadly, our doctors don't have the time to peruse medical journals like we would hope. If you find something that sounds like it could benefit you or protect you from further harm please, bring it to your doctor.

To view the case report go here: http://download.springer.com/static/...abbe3&ext=.pdf

Wishing all the best day possible,
Tessa

[visioniosiv]

Originally Posted by zookester

Hello all,

I wanted to share a recent experience in hopes that it will offer some hope in times where hope is hard to find.

A few of you knew that I was recommended to go through a series of injections into the damaged area of my nerves that caused my CRPS II/Causalgia. The goal of the injections was try to calm those injured nerves and slow the progression of the CRPS, which was very rapidly spreading. I had my first one on Monday and though it did provide instant relief it only lasted for 18 minutes... ugh that was a big let down after driving just under 3 hours to get to the appointment. Another let down was that I didn't realize the injections this doctor was giving me was the same as ones I already been given almost daily right after this all began.

Bummed but still willing to try a few more just in case.. however, the letdown brought me back to research, looking at case reports, studies and surgical outcomes of others who developed CRPS after the surgery I had. It was then that I stumbled upon a case report I hadn't seen before. It was a case report about a young woman who had achieved 10 years of amazing pain control after a surgical procedure left her with CRPS II. What was most amazing to me was that though she had surgery for a different reason the surgical area was the same as mine and we had at least one of the same nerves affected, almost identical symptoms and she had also (like me) had and SCS that helped just not enough. She went from a pain score of 8-9 down to a 2.. for at least 10 years!! So.. I took this case report to my doctor, who read it with great interest and then said "YES, this would be very viable option for you" he went on to explain he had provided this to many of his cancer patients with great success. There is a trial injection I need to have prior to this new procedure but, they are already working on the insurance approval .. so it could happen as early as 2 weeks! OMG I am so excited about this possibility!! Like with anything there are some risks but, I am hopeful and thankful that there is another option and one that could potentially give me much of my life back. I will post the case report below.

Part of my reason for sharing is that it doesn't hurt to bring case reports and other medical studies to the attention of our doctors. This is the second time I've done this and both times it was received and I benefited from it. Sadly, our doctors don't have the time to peruse medical journals like we would hope. If you find something that sounds like it could benefit you or protect you from further harm please, bring it to your doctor.

To view the case report go here: http://download.springer.com/static/...abbe3&ext=.pdf

Wishing all the best day possible,
Tessa

Bless you Tessa - looking for answers with a positive, determined attitude is what I think is the first and biggest step in getting to Part II: asking the right questions (FYI - I couldn't access the link - the website said it required a login to proceed.)

We are our own greatest support network! Faith and confidence in ourselves lets us make the best decisions with our doctors and medical treatment.

Thanks for what you bring to all of us.

[Vrae]

I am SO EXCITED for you Tessa! I just know this is going to work for you and you won't have to commute 6 hours to get it!! I am so glad that your doctor is paying attention and willing to try and more importantly that you haven't given up. Go YOU! It's going to be an amazing year for you hon!

[RSD ME]

I am praying that this works for you Tessa. I am so proud of you for getting your dr to listen to you and hope you feeling better soon.

[zookester]

Thanks to all.. you just don't know how much the support means to me especially today as it has been a rough one!

I've attached the actual document for those interested in reading it, sorry the link didn't work.