Going for SCS tomorrow
 

Hi all,

I have not been posting all that much lately, but I do still drop in from time to time just to see how some of you are doing.

Tomorrow is a big day for me and I decided that it was a good time to share with everyone again. I will be going in to my PM doctor tomorrow at 6:45 in the morning to begin my trial with the SCS. I am quite nervous about the whole thing with the big concern of the possibility of the CRPS spreading, or getting worse. I have had a long time to think about this and have put it off 3 times so far for one reason or another, whether it was insurance problems, depression, not yet ready and so on. Well, it is finally time to take the chance and at least see if it can help me enough to decided to go ahead with the permanent implanted device, or find another treatment. Perhaps look into a new treatment similar to the SCS called a DRG stimulator that a good friend had recently mentioned to me, but that is getting ahead of myself. I am going to try to stay positive and hope that this gets me to a more comfortable level where I won't have to worry about what treatment is next.

I will try to keep you all posted in this coming week during my trial to let you know how I am doing.

Take Care,

I've never heard that a SCS can actually "help" with the signs & symptoms from RSD/CRPS. It lessens the pain, if you're lucky, but that's about it. It's not actually considered treatment of CRPS, where I live at least.

Keeping you in my thoughts and prayers (((((((Alaina))))))) Thanks for the update.
peace
zinnia

Dear Alaina,

I know many healing thoughts are coming your way from the group. You are being carried in our hearts and surrounded by wishes for relief and restoration.

Be extra gentle with yourself and take good care. Though you are anxious (who wouldn't be) try to keep stress down and spirits up. Hitting the Vit C 500mg a day right now might not be a bad idea either.

I sincerely hope the SCS starts the pendulum swinging in the other direction so you can start to heal and put a little more weight on that purple foot of yours. This was not an easy decision, but you made it after careful consideration for what was best for you and I respect your strength and courage.

My PM had mentioned once about the SCS improving circulation and I had wondered about this effect. This article from 2013 about SCS in limb ischemia sums it up nicely in the abstract paragraph so no need to read the whole thing. Basically decreased sympathetic activity and improved microcirculation resulting from the SCS lead to improved outcomes and limb salvage for vascular patients. Maybe you will get this effect AND decreased pain transmission. That would be great!

Spinal Cord Stimulation for Chronic Limb Ischemia


Okay enough technical stuff. Be well and let us know what happens. We are with you. :hug::hug::hug:

Just saw this now...but I hope everything went well today. Keep us posted on how things are going. I know the decision to move forward with this treatment is a difficult one given that there are both positive and negative experiences out there...but I really hope that you are able to get some pain relief from it and that it works out for you. We are all different and have to decide for ourselves what treatments are worth trying based on all the various risks...you obviously know this and have not made the decision lightly. I will send good thoughts your way and hope that this will finally give you the relief you need from the pain of this horrible condition. Hugs.

Thank you all for the encouragement.

I have been rather sore these past couple of days following the procedure but I am trying to remain hopeful.

I am a little upset with my PM doctor. Having the SCS leads put into place caused a rather bad flare in both of my legs. I have had symptoms in both, but for the most part, the worst of it was mainly in my right foot up to a little above my ankle until the leads were put in. I have left several messages for my PM doctor, but still have not had a return call. I did speak with the on call doctor earlier today. She was going to try to contact my PM doctor, but gave me the ok to continue on with the therapy how ever my representative feels comfortable doing so. This afternoon, we increased the program level for the first time.

So far, I am not very happy with the way things are going. My pain level is higher than before the leads were put in, but on the positive side, I can touch my foot for the first time since last January. Hopefully this flare will calm down some and I can start doing some physical rehabilitation.

I hope the flare up passes quickly for you. While I do not have a SCS...I do know that for me any kind of trauma usually causes at least several days of flare up so hopefully you'll be better soon. Hugs...really hoping this works for you. The reduced sensitivity in the foot is a good thing so I am hopeful for you. Keep us updated!

Well, lets focus on the positive, that you can touch the foot, and figure the rest is just from the trauma...

Thanks for keeping us posted!

Don't you have other forms of medication or treatment besides the SCS? :(

Yes I do. I started out with the usual Neurontin, and Elavil, along with Norco for breakthrough pain. The Neurontin and Elavil did not help me enough to continue taking them. My previous PM doctor moved me through a several different medications and ended up over medicating me. My current PM has me on a relatively low dose of MS Contin, along with Effexor and Terazosin. I also take Norco for breakthrough pain, but I try to limit that to the days that I travel back and forth from my doctor appointments to where I am currently living which is just under a 3 hour ride each way. We drive down one day, go to an appointment the following day and drive home on the third day. I am usually flared rather badly those days from all the traveling but there are not many doctors that now much about CRPS where I live, plus I did not want to switch doctors again. This current combination of medication does help some, particularly the Terazosin which helps with vasodilation to improve blood flow to my foot, but they do not help enough with the pain. I would really like to get off of the opiates all together, and go back to something more like Tramadol when I feel I really need something.

Biobased, my PM does not believe that LDN does any good for CRPS so he will not prescribe it:confused:. I did ask though in case you are wondering.

I also see a pain psychologist. We started biofeedback about a month ago. So far, I have not seen this doing much for me and no longer do this at her office, but I do still use it at home. I figure that it does not hurt anything continuing on at home, but I did not see enough improvement to continue paying for it when it is something I could easily do at home.

I am taking things one step at a time, quite literally. I don't expect to get rid of the pain entirely, but as I told my sister the other day, I just want to be a little more comfortable where I can start trying to use my leg again.

Purple,

I am not surprised. ):

I wish you the best and pray that you heal.

I react great to Neurontin and have been on that medication since 2004 - it still is doing great for me. I also have a pain patch with it. It's different for everyone, I guess.

Before 2004, I was given Tramadol (first the drops then the slow release ones). It only ever took the sharpness away. So it wasn't as effective for pain relief for me. But at the time, it was better than not having anything there. The pain was/is so intense without the pain medication! I've run all the stages in my legs (almost 3 years without diagnosis & treatment because no one knew what it was that was wrong with me).

Over here a SCS is only ever suggested when all meds have been tried and nothing else works well.

That's why I asked.

Hope you are feeling better soon Alaina. Glad to hear you can touch your foot. Thanks for the update. Wishing you the best.
peace
zinnia

Hope you are feeling better today! :)

Well, things are not going so good. After trying to place some weight on my foot Saturday night in to Sunday afternoon, my pain levels went back up. I do not know if I over did it one of these days, or if it was just a coincidence that my pain levels were down for these two days.

My representative does not seem to know what to do as a result of the increase in pain. I find it kind of strange that I go for a week long trial with a device that has three programs and seven levels for each program, but my representative does not want to move past program one, level six, which is one step above where I started. Here it is, day five of a week long trial and my PM, who finally called me back last night, told me to turn the unit off entirely. I do not feel that only trying two settings on a unit that has many more settings is a proper trial, but maybe they have their reasons.

I think that they set it on a special program, and it has to work on that, if it doesn't you aren't a good candidate. I think that's how it goes here as well. You either respond to the theory of it working, or you don't.

Is it totally implanted yet? I gather not. Be wary of infections in that case. Slightest raise in temperature, or it going red at the site: be at your doctor!

This is only the 7 day trial. They have not implanted a permanent device, and since I did not respond well, they will not be implanting one. The temporary comes out tomorrow.

They did caution both me and my mom, who I am living with at the moment, to watch for a rise in temperature and other signs of infection. My mom happens to be an RN who specialized in pain management before she retired. All of her patients were terminal hospice patients, so she does not have any experience with CRPS or anyone with a SCS. She has had a number of patients with long term epidurals, which have similar dressings from my understanding. She has been checking my back daily for any sign of infection, and I have been taking my temperature twice a day. So far, I have not had any problems. I am keeping my fingers crossed that I continue to not have any problems while the incisions for the leads heal up.

I'm sorry it didn't end well for you. I'm sure they can tackle - keep tackling it with medication.

Wishing you lots of strength!

Alaina,

Sorry your trial was unsuccessful. I know your frustration.

I had my failed SCS trial a few years ago. I had leads, etc. put in on a Thursday. The following Monday rep tried unsuccessfully to reprogram. My PM removed the leads that day. A few weeks later, my PM wanted me to do another trial. I declined.

Obviously SCS works for some; but not all of us are good candidates. Oxycontin and Percocet have been the only thing that has made my 24/7 pain tolerable. I have been on the same dose for over four years. You mentioned the Oxycontin did not work for you. What dose were you taking and how many per day? Sometimes the dose may not be adequate.

Alaina, hope the pain from the trial procedure has healed and your pain issues have not worsened.




Gerry

Alaina,

I am sorry the trial did not go well for you. I hope you are feeling better today. May you heal quickly from the procedure.

Take care,
zinnia

I'm sorry this didn't work out for you...I was really hoping that it would...but better to know now than after it is implanted. I've had my share of disappointment following various treatments and I know how hard that can be. Hugs.

hi alaina. i'm sorry the scs didn't work out for you. i hope that your pm dr can help manage your pain another way so that you can deal with your rsd pain better. i am still relying mainly on meds from my pm dr to help manage my rsd pain. not ready for trial scs yet if ever. it scares me. but i am proud of you for your courage. don't give up hope that there is something that can still help you with your pain. soft hugs coming your way my friend.
i am also sorry i took so long to respond to your post. i have been having some problems of my own and have been off site for a while. hope you feel better soon.

I knew that there was a very high chance that this was only going to make things worse going into the trial but I felt I had to take that chance. It did cause a flare in both legs but that has calmed down some. I have been arguing with my PM for some time about CRPS spreading. He does not believe that it does, which makes me a little weary of his knowledge of CRPS. Maybe he will learn some from this experience. Although he may not be as knowledgeable about CRPS as he thinks he is, he has done more help for me than any other doctor that I have been to so far.

I have decided to let him try another procedure even though I question his knowledge. On September 12, I begin a 5 day outpatient Ketamine infusion. As the time nears, I will likely start another thread to share my experiences through that.

Thank you all for your support through this even though it did not help.

hi alaina. your dr sounds like he is trying different things that are used for rsd, but from what have lived and learned from rsd is that if definitely can spread. my neurologist didn't seem to thinks so but my pm dr did and after five years of living with this monster i know for a fact it does spread. your dr should read all the documentation of spread on this forum and online. the fact that he doesn't makes me think that he is just guessing and maybe if he were to try adjusting your meds, have you try light aqua therapy and pt then you may feel better and not have to go through all these extremely invasive and expensive procedures. i have never done ketamine either but know of others who have and it was not easy to tolerate and the effects didn't last. you may want to get a second opinion and also look for another pm dr who is more knowledgeable with rsd. otherwise he may just keep trying test after test which in my experience can cause more spread and infection of rsd. i am not a dr but it happened to me and my drs also warned me about invasive procedures. just be careful and whatever you decide to do i hope and pray that you feel better soon. soft hugs my friend.:hug:

p.s. i am not a dr and though i never tried ketamine i do know that everyone who had rsd responds differently to treatments so maybe it might help you. but that is something you and your drs have to decide. whatever you do decide i hope you find some pain relief soon. personally i try to do the least invasive things first and then if they don't work then i consider trying the next best treatment available with the help of my drs. hugs.

Letting you have ketamine infusions means he is knowledgeable; even knowledgeable doctors sometimes debate over the spreading issue.

It definitely spread in me. It started in both knees, now I have it all over 2 legs/feet and 2 arms/hands. So yeah, reality proves you wrong!

The best part about this is that the doctor is still trying to help you. I know MANY people have gotten good relief from ketamine...so try to stay positive about it. We have to keep trying and searching for the method of treatment that works best for us...I will keep you in my thoughts and hope that you are one of those who gets great relief from the ketamine treatments!

Alaina

Thank you for sharing your experience with us. Together we are strong as we share our experience, strength and hope with each other. It takes a lot of strength to live with RSD. There is always hope even when we loose sight of it, it is still there. It helps me to remember my higher power is always closer than my breath. I am seeing now that each really bad day that I get through does give me strength to keep on keepin on down the road to recovery one baby step at a time, one day at a time. Experience is a great teacher. When one door is closed another one is opened.

You are in my thoughts and prayers Alaina.
Peace
zinnia

hi again alaina. i just wanted everyone to be clear on my last note on this thread regarding your dr and scs and ketamine. i did not say your dr wasn't knowledgeable on rsd. he does seem to know about various treatments out there for rsd. what i said was that their may be MORE knowledgeable drs out there who may be able to help you manage your pain better. the reasons i said this was because first of all your dr took so long to get back to you when you were in pain after implanting the trial scs. IMO a good rsd pm dr would either have called you back asap or had a 24 hour hotline available for their patients in case of emergency. the second reason i questioned his knowledge was because he said that rsd doesn't spread. though drs may disagree on the measure of rsd spread, rsd can in fact spread and he is incorrect in saying that it doesn't. there is an abundance of research done that proves it spreads which you can find on this forum and online. the third reason i questioned your dr was that usually with rsd a knowlegeable dr will try the least invasive procedures first in order to avoid any spread or infection of rsd. first meds are tried (sometimes including gabapentin, narcos (which may need to be adjusted at times) and short term prednisone.) and then usually nerveblocks are tried up to usually six times yearly depending on your insurance. then there are other non invasive procedures like pt, aqua therapy, heat, tens units, calmare, hbot. then there are the more invasive procedures like accupuncture (though that caused spread for me but everyone is different). then there are iv procedures like ketamine which i believe are offered at places like drexel with dr. schwatzman (i am not sure if this is the correct university or dr for ketamine, but i think it is). then their is the trial scs and then the permanent scs. then their are pain pumps used for the really bad cases of rsd (i believe that morphine is sometimes used in these). your dr did the scs before ketamine. though i am not a dr, i would have suggested the ketamine before the scs because it is less invasive.
and like i also said in my last post that though i read of people who had no help from ketamine. i have also read of people who have had short lived positive effects from ketamine and who said that that drug is not easy to tolerate. that doesn't mean it will be that way for everyone who tries it. what i've learned from myself through the five and a half year of living with rsd is that not everyone responds the same to treatments and what might help me might not help someone else. and what helps someone else might not help me. it takes alot of trial and error and a good pm dr to find what will bring you the most pain relief. i am sure your dr is trying everything he can to help you but with rsd being so tricky to manage you just need to be extra careful (IMO) of what you try and who you try it with. i am not a dr but have had spread due to some procedures and i just don't want that to happen to anyone else suffering with this disease. i also don't want to discourage anyone from trying something because i may not agree with it. i am only saying to do your research on rsd and the different treatment options available and discuss it with your dr. then weigh the pros and cons and make an informed decision. ultimately the decision has to be yours and your alone. you have to be comfortable with what you decide and in time you will learn to trust your gut and know what works best for your individual needs. i hope this clears up any misunderstandings. i think everyone here on NT is awesome and all of us living with rsd are true warriors who need to stick together to help manage our pain and hopefully find a cure someday. i wish you all a pain free as possible night tonight. soft hugs to all.:grouphug:

RSD,
I really have to strongly agree about the lack of response with the SCS which is open to infection, etc. Being she was dealing with pain should have been of concern to him. That alone would be reason enough to question his ability to effectively treat his patients.

Gerry

Thank you for sharing with us RSD ME. I am glad you are here sharing with us.
:-)
peace
zinnia

Alaina,
Been wondering how you are doing? Have you noticed whether the trial might have caused you an increase in your pain levels.

Also, are you still planning to have the Ketamine infusions in September?


Gerry

Gerry,

I have still been having a hard time getting in touch with my PM since he put the SCS trial in. I see him on Wednesday and am going to let him know how disappointed I am with him not returning any of my calls. It seems to me like a lack of concern for his patients if something goes wrong. I would like to go in for the ketamine infusions, but if I can not get through to him if I should have some sort of problem after I get home, I do not want him to do any procedures where I might have to try to call him after I leave his office. I will let you all know if I am able to work things out with him later on in the week.

Alaina,
You have good reason to be concerned. You have no idea how you will react to the Ketamine. Not sure even after you let him know of your disappointment he will change his treatment of his patients.

Where/how did you find this current doctor you are seeing? Was he recommended by your primary doctor?

Gerry