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17 yr old son recently diagnosed with crps help
my son has been diagnosed with crps after 6 months of severe pain and now cold and blue leg and foot with severe pain been on many meds still is and had many tests till dr at stlouis said he had crps now are having to see dr in louisville because insurance reasons he had his first appt there today and had a lumbar sympathetic block done awesome at first after 6 months he was able to move his foot and leg color was back and it was warm however now its cold pain is back and color blue agin have to come back next wk for another can anyone help me understand why they wont just do the spinal cord stimulator now instead of prolonging it how much more does he have to endure thanks ky mom e-mail me at kymommajr@yahoo.com anytime
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Hi Kymoma.
Welcome. You are in the right place and you have found a good home. Everyone here is loving, compassionate and honest. Please, just slow down. I know that you are overwhelmed right now. We will get through this together. Please consider us family. That is what we are. We listen, we give opinions, we give strength...hope. There are a very great number of "clinically informed" people on this board. That is wonderful. They always lead us in the right direction legally (sp?) and scientifically (again, sp?). AND we have real people dealing with this real issue. It is not a surprise that we are not Einsteinn and struggle with the most basic of English (see above..) Therefore, please feel at home to express your struggles, your fears, your confusion and your strengths. You are home! Welcome! Kim |
My thought is to talk to the pain docs about repeated blocks since the first temporarily helped. For some, there is an additive effect. The SCS is much more invasive with increased risks over the blocks...
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Welcome!!
I'm sorry to hear your son is hurting so!! I understand your sense of urgency in wanting your son's pain to ease and stop. On a good note... it appears that in the big picture of RSD.. your son was diagnosed early. I know... it probably doesn't feel like it. Early diagnosis and agressive treatment is a good thing!!! Most doctors start treatment with nerve blocks... As for the sympathetic blocks... The fact that the first one worked...even for a little while is a good sign!!! Most doctors want to run a series of blocks... I'm sure the doctor wanting to do a second one is in hopes that it will last longer... and that each additional one will last longer providing more and more relief. I believe this is probably why the doctor doesn't want to immediately jump into an invasive SCS procedure. I can't remember who... but I do remember someone posting that the blocks worked for them and their pain was immensely relieved. I wish your son and you the best!!! Please feel free to ask any questions you may have... someone will always be along shortly to help you in any way we can... There is a wealth of information on this forum.... please feel free to roam around. Here is the link to our Useful Websites and links thread: http://neurotalk.psychcentral.com/thread247.html :hug: Abbie |
As mentioned above,,the dr;s ussually want to do a series of blocks,,if you son doesnt have an entrapment,there are documented cases where the blocks thru the RSD into remission,,that would be the best case scenerio,,,,and as abasaki mentioned ,the fact that he had a 6 month remission from one block is great,,it is normal protocol to run a series of them first,and i agree with the above advice,,you dont want your son to have a SCS only if absolutly necesary..the rule of thumb is,,if a person is still in smp and not progressed to sip and he or she gets good [the longer the better result will be] from the blocks,that they will then be a prime candadate for a SCS,,,,,,,but your son has everything going for him,,he;s young,,youve caught it early,,and he is responding well to the blocks,,,,,,,thank the lord for this good news and praise his name,,,I hope and pray that another 1 or 2 blocks will do the trick,,,,one of my old pain management dr;s told me that he has had several go into remission by cutting the head of the snake[blocks] off early,,,,,,,,,,,,may the Lord bless you and your son,,,,,,
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Hello Kymom and Welcome to NeuroTalk! You will meet many great people here who i'm sure will be more than happy to help you in any way they possibly can so please don't hesitate to ask any questions you have!
I'm so sorry to hear about everything that your son is going through right now!:hug: I've just turned 15 and have had CRPS in my left leg and both arms since I was 12 years old so I DO understand some of what your son is going through and how horrible it is dealing with such a scary condition at a 'young' age! As others have said, your sons fairly 'lucky' that he's been diagnosed so soon. CRPS is best treated if it is caught within 6 months. Personally, I wouldn't rush on getting the SCS implanted. I've read such horror stories about it and heard people on this message board mention spreads etc that I don't think it's worth the risk! Of course, everyone responds differently and it may be something you want to look into in the future but personally, I wouldn't have it. Should your son decide to try the SCS, make sure you read up all the pro's and con's before rushing into everything. It isn't a cure - it will only reduce the pain somewhat if it is going to work. If you have any questions, please feel free to PM me. I don't mind talking to you or your son at all! My mums happy to talk to you also from a parents point of view so if you want her email address, let me know. Best wishes to you and your son! Alison |
HI,
I also have RSD in my foot and leg. I first recieved sympathetic blocks. Like your son they worked for a few hours. After this my doc did a epidural drip that sometimes will work when a block works any little bit. After a failed attempt with the epidural drip then we went with the SCS. My stim works great for the leg and foot pain but it is still cold and blue. The down side is that I have had three surgeries to change the placement of the battery because it would be prtruding once the swelling goes down. I now am scheduled for another surgery because the stiches that hold the battery in place have busted loose. The other down side to my experience is now I have Severe back pain due to all the surgeries. I wish your son the best and hope he can be pain free. I am 28 and was diagnosed when I was 26. Im sure I had it since I was in High School. I just know found a doctor who had any knowledge about RSD. If you have any questions about any thing please feel free to pm me or email me. I,ll email you so you will have mine if you ever want to talk about anything. |
Hi I am sorry about your son. With treatment a good pain doc will start off with less invasive and work to more invasive. Also the SCS is not for everyone with RSD. I know I was suggested this by one pain doc and then after got another opinion where the doctor wanted to start with less invasive procedures so I did and those procedures increased my pain level and the fear was that the scs may as well. Now I know a young lady who did get a scs but this was after many other treatments who is benefiting but know others who condition has spread because of it. I know that as a mom you want your son to be out of pain just like my mom does with me. It is very important in my eyes though to not rush into something without really thinking about and to get another opinion. If you want to email me I am here anytime.
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Hello KYMOM My name is Carol and I live in Louisville. I have a Support network here so please feel free to get in touch with me. My info and # are on the RSDA website under support groups. I have a permanent SCS so if I can answer any of your concerns please just ley me know -Fondly-Carol
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Hello KYMOM
Quote:
Hugz, Kathy:grouphug: |
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