New member seeking advice
 

Hello everyone. I found this site by accident, but I sure am glad. My husband who had a surgery over a year ago on his left knee, has developed RSD, that has spread through out his entire left leg, groin and also starting to go to his left arm. What a painful road this has been, literally. After months and months and countless visits to various doctors, we are undergoing treatment at Johns Hopkins. He has already tried a nerve block, which lasted all of 1 1/2 days. We go this coming wednesday to discuss the possiblities of undergoing a spinal cord stimulator inplant. He is scared to death. He also does not want to continue on the medications that he is taking as it really makes him wacked out. Not sure what direction to take. Is there anyone who has had the stimulator and would you mind talking either by email or even phone to us about this?
Before all this took place, he was a very active, hard working carpenter. This has not only taken a physical, but also a mental and emotional toll on him and the rest of the family.

Hi! I'm glad you have found this site. It's wonderful. Everyone on here is so great. I have had a SCS since April 09. In my case I have had a very rough go of it. It so works for the RSD pain but know have back trouble. I fall alot and have recentley ripped my internal stiches that hold the battery. So now I guess I'll be off to surgery number 3. I never expected the finacial part to be so great, but because of my problems I see the doc sometimes 3 a week. Some people have had a wonderful experience. They do a trail first that is not as invasive as the surgery to implant, so you can try it out. You can feel free to PM me if you'd like. I don't think I'll have it removed any time soon, just trying to get it right. If you have any questions feel free to ask. Hope to hear how things are going for him. Have a wonderful day!

Hello bpkaper!
 

:welcome_sign:

You have happened upon a fantastic forum!! Plenty of wonderful support here!

I am so sorry about what your husband is dealing with! RSD is a nasty nasty condition!

Getting the SCS is a huge decision and Drs seem to be pushing them more than ever.......
Mine is working well for my lower extremity Peripheral Neuropathy burning pain.......I've had it almost a month.

I recommend you check out our RSD forum.....here is the direct link just click on
http://neurotalk.psychcentral.com/forum21.html

Be sure to ask your Dr about the possibility of the RSD spreading when getting the SCS implant. It has helped many, yet what I am seeing alot of is RSD pts saying that the SCS aggrivated their condition.

This procedure is a very individualized form of pain control....so do not take and ONE person's as gold!

Please stick around! Keep this thread current and let us know how your husband's treatment plan continues....
It will be very valuable to others who are seeking out the same info you are!

God Bless!
Rae
:Heart:

Here is a link to National Institute of Neurological Disorders and Stroke
Complex Regional Pain Syndrome Information Page:
http://www.ninds.nih.gov/disorders/r..._dystrophy.htm

Other good sites for RSD: www.rsdsa.org,and www.rsdhope.org

Hope this helps!!

Hi. And welcome!

I am scheduled for the SCS on April 16th. Hopkins will do the implant and I am participating in a study on SCS with RSD. I am very optomistic about this procedure and study. It's been a long road to get the results I hope to obtain with them, just to help other people with the same disorder. You can PM me and we can talk about the outcomes, etc. I wish for your husband to feel relief. If I can help, I would be more than happy to! Where in DE do you live? Kim

I'm a new member also and want to reply to your post.
I've had CRPS for many years, upper torso and limbs, face and back. I had the blocks also and they only helped for a few hours. I was on morphine for a few years until my new pain specialist took me off that and put me on ketamine, which was a Godsend. I got my mind back and felt more energy.
I've had my stimulator (SCS) for several years. At first it helped but the pulsation started bothering me. My new specialist had it reprogrammed with a higher frequency which makes for a smoother stimulation. I now have it on 24/7. My sleep is deeper which makes for a better day. I still have my bad days which bring me down, and I deal with depression but thru the years I have learned to live with it. My husband is a great support. I know what your husband and you are going thru and I pray and SCS will help him. Keep in mind that SCS's don't work for everyone. My aunt had the implant and she couldn't handle it. But my sister has one and praises it.
Has your husband seen a counselor? I've seen a psychiatrist since the first moment CRPS was diagnosed. I was taught deep breathing exercises, meditation and biofeedback and that helps a lot. CRPS is hard to accept, and there are good, bad, and worse days. I count my many blessings: spouse, home, food, family, pets, and I try to think of these things when I am very depressed. I watch the birds thru the window on rainy days (which is really bad on CRPS), and sit outside on good days. My memory is bad (part of CRPS) so I keep a list and calendar.
Your husband is very fortunate to have you, and I praise you for asking for info to help him. Please remember that even tho he is suffering and you do what you can for him, you need to have time for yourself in order to refresh your mind. Then you can be a better support system. I pray for you both.

The Process of walking the Road
 

Hi BP- and as another fairly Newbie to you and your husband, Welcome!! I came looking through the net originally for "what's next?" as I wait, and wait some more for the approvals to match my hopes. I am a peripheral neuropathy person so not directly on point to your husband's RSD; nevertheless, being allowed onto the SCS thoroughfare is fairly the same as I understand it.

My physiatrist, the fellow who has managed my pain for the last five years [we sorta celebrated the anniversary of my wreck on Easter!] has been pretty conservative. He came right out with the notion that the process would be a multi-disciplinary "many talking heads" look at ME evaluating the propriety of going forward with ANY SCS. Now, starting this past January we first broached the topic of "well..... is this something that would have a chance of helping?" The doc sent my wife and me home with a video pamphlet from the manufacturer we are considering. The pamphlet itself opened our eyes quite a bit regarding the product, the process, and potential results. Your doctor should be able to provide something along the lines of informational data for your quiet, private, out of office review and consideration. After all, SCS is one of those invasive procedures that results in some life change.

Now since the life change Post Wreck for my family has been mostly negative: Dad hurts, Dad is crying again, Dad is upstairs screaming [from pain, not the mismatch of socks in my drawer], Dad is not earning any money anymore, We can't go to Vail for skiing anymore, and yada, yada, yada. Sure, the toil on my family has been financial and emotional gut wrenching stuff, but we still have one another.

I was the original "fraidy cat" not wanting another of those "oh, you have to cut on my moments"; BUT, pain has a way of persuading one to consider.... at least think about the possibility of life without morphine. I am 6'2" and Pre-Wreck was thought by folks to be athletic, well, because I did so much stuff since my former work was office oriented. Most folks referred to me as "Big Guy," well, they still do, but few thought I would fear. I have feared doing this again though. Really, though, fear is pretty much past tense in this house because the prospect of re-gaining some of the life which has been lost is COMPELLING.

Many on these threads have posted both pro and con regarding the steps, the procedure, and the outcome; however, without risk there can be no gain. Right now my life is morphine courses in the morning accompanied by a good year of neurontin [and lots of it] along with the evening aperitif of restoril [because I awaken every couple hours from pain otherwise]. Life is pretty limiting thusly lived.

One cool thing about the Video Pamphlet doc sent home with us was that the included reference to their website, which we explored, included Patient Ambassador contacts. So, guess what, I contacted them. We talked, via email and on the phone. I heard good and bad, rebirth and limitation, well..... just a boatload of honesty. These folks were not paid manufacturer consultants, but folks who had received the products ready to comment about their walk. Perhaps information received from your doctors will be as forthcoming. But, I gotta tell you, it was pretty revealing to have a Patent Ambassador, and a lady mind you, telling me I would be able to use the toilet and that it would not be as bad as it was trying to recover from lumbar surgery [which I have endured multiple times].

Reading, watching, listening, and researching led me to the conclusion that I can do this.... for myself, and for my family. Have I had the SCS implant yet? Nope. I have been through multiple tests, conversations with the orthopedic surgeon who said he will be glad to do the work on me, and am now facing this Friday the last hurdle I know of to insurance and doctor's approval, the psychiatric eval to make sure I am a good candidate, not head full of alluring tales of fairies and knights and all of that, but looking at this process with an open mind to potential risks, benefits, with a sense of realism to boot.

Maybe I will be allowed the opportunity to know firsthand whether the device works through the Trial surgery. Then...... THEN I will know I am truly ready; besides, I would like to get on the dancefloor with my wife again.

Sorry about rambling....
May this process of discovery and potential for pain management be something about which both you and your husband gain comfort, and no matter the course you select, may the healing necessary to a full life be showered upon you all.
:hug: Mark56 :)

Hi Kim, thanks for replying. We live in Dover, DE not to far from where you are. My husband is scheduled for the trial at Johns Hopkins on the 15th of April. He is having doubts that it will work. We would love to be able to talk to someone in person who also is dealing with this same condition. Do you attend any support groups? We have not found one as of yet. If you would be interested in talking on the phone, please contact me at **. I know that he would really like to get additional support. I look forward to hearing from you. Thank you, Pam

Thank you for your post. Wow, I cant imagine dealing with what you are going through. My husband just received word that the CRPS is now in both of his legs from the waist down. This is definitely been a rude awakening. My husband is on the fence, more off than on, about doing the trial stimulator. He has lost so much weight that he doesnt think he will be able to be comfortable with it in. I am glad to hear that it has worked for you. I pray that he will at least try it and see if it does give him any relief. At this point some is better then none. His pain management doctor keeps increasing his meds everytime he goes to see them. In fact he goes again tomorrow. I will mention the ketamine to him and have him talk to his doc about it. The meds he is on now really throw him for a loop (me too). Thank you for the info, we will definitely use it. Yes he does see a psychiatrist on a regular basis. In fact the whole family does. The children are having a difficult time dealing with the mood swings. Happy go lucky one minute to horrific pain the next. Its hard to know how to handle it. Thank you for your words of encouragement. Please feel free to contact me anytime. Pam

New Member
 

Hi there, I'm new to this site. I had 2 SCS implant trials before finally having the permanent implant surgery on December 16, 2009. I have been dealing with chronic pain since 2001 as a result of scarring and lymphedema from cancer surgeries and from degenerative joint disease of the sacro-illiac joint.

Prior to my scs implant I'd tried most of the pain medications available as well as having gone through 2 experimental treatments (dextromethorphan and ketamine injections).

Since having the implant, my djd pain has been reduced by about 70% but it has not helped my lymphedema pain at all. I continue to take Dilaudid and norco for pain as well as using lidoderm patches.

As I'm at 4 months post-implant, I've started back to some of my normal routines but continue to watch how much weight I'm lifting. One of my unanswered questions regarding this implant is if I'll ever be able to ride horses again. Horses are a huge part of my life and I initially turned down having the implant after my first trial because the implant would interfere too much with caring for my animals. The past 4 months have been very trying as I've not been able to care for my animals ( I have 2 horses, 3 dogs, 4 ducks, a chicken, 6 parakeets, and 2 tanks of fish!) My poor mother has been having to care for the animals for me.

If anyone knows anyone with an SCS implant who has horses, I would love to hear how they are managing their horses and if they are able to ride with their implant.