New to forum - Lumbar Sympathectomy Question
 

I was diagnosed with RSD in early 1992 after sustaining a traumatic knee injury during the first gulf war. *In short, after a year of hospital admissions, blocks, epidurals, and more meds than I can list, the VA doctors recommend a surgical*Lumbar sympathectomy. *Being*a young newly married 19 year old all I wanted was for the pain to go away, so I agreed to have the surgery. *

This wasn't just an outpatient type surgery, they sliced me open, and I think I was in the hospital recovering for a good week or so. *I have a nine inch scar as one of the many daily reminders of what may have been one of the worst decisions I've ever made. In the months following the surgery, the pain actually increased; but then after several more blocks combined with more medications the pain subsided enough to where I was able to walk again. *

I was ultimately medically discharged from the military; and again, being young and dumb, I just took what they offered me, which was very little monetarily and a disability rating of 0. *I did however keep all of my medical records, and about four years ago I finally went to the VA and received an increase in my disability rating. *

For the past twenty yeras I have never been pain free, but up until about a year ago I have been able to lead somewhat of a normal existence. Within the last year, I have noticed an increase in my pain level, and the bad days seem to come around more frequently; but what I am really concerned with, and what brought me to this form is my mental state. *I have had some pretty severe issues within the last year, and they just seem to be getting worse. *I am being treated, but so far nothing seems to help on a consistent basis. I am almost to the point of not being able to function at all, which I'm really trying to avoid.

I'm try to figure out if RSD; and more specifically, the Lumbar sympathectomy*is somehow a contributing factor to the rapid decline of my mental state. Any and all input is greatly appreciated.

Detpas

Detpas

I can tell you unless it is stopped RSD has a tendency to progress from everything I have read. Being that you went back to the VA can you go back and get a new referal for the RSD? Try not to be down on yourself I know being in pain and having limitations sucks. But I tell you my foot and leg don't hurt half as bad when my spirits are ! Thanks for serving!!!!

I am so very sorry for all that you have gone through and what you are dealing with. RSD is no easy thing and to have it for 20 years...congrats to you for making it through this far. We all know what a struggle it is daily to deal with the toll RSD can take on us.

Can I ask...what sort of treatments have you had and what meds are you on? Other than pain...what are the symptoms that are troubling you? Last year I experienced a worsening and spread of my RSD from my left ankle to my entire upper body and it was accompanied by a lot of other crazy symptoms like loss of balance, ability to concentrate, dizziness, nausea, hallucinations, etc...it was awful and it was scary. There are different things that we tried and eventually I found some relief for those symptoms...though we are still working on getting the pain levels down. The meds themselves were part of the problem at one point so it has been a slow process of getting things back to a point where I can function much more normally...though by no means am I 100%.

I can only imagine what sort of toll this would take after so many years...I know how bad it has been just these past 3 years since I got RSD. Neurotalk is a great place and I have gotten such great support and advice from the people on here. RSD is a strange thing and everyone is affected differently and what works for one person doesn't necessarily work for another...but at least I have found out about a lot of options that I never would have known otherwise and have been able to find things through trial and error that have been helpful to me.

I'm going to be starting tDCS treatments soon and some people have found miraculous success with it. I'm by no means an expert (especially since I haven't even started my own treatments yet) but I would encourage anyone to give it a try because people who found no success with any other treatment for their RSD have gotten a lot of relief. There is a thread on here about it and I would recommend reading it. There is always hope that even if the next things you try doesn't work that they will come out with a new treatment option that WILL work. 20 years is a long time to live with this and I am amazed by your strength and courage to live with this every day and to keep fighting.

Alt & Carta:
Thank you for the kind words and support. *Current meds are tramadol, remeron, and I just started taking Effexor. *Symptoms are really hard to put into words; in addition to the increased pain, I would say overall extreme depression. *I have seemingly lost the ability to cope with any type of stress or conflict; I *become dizzy, face feels flush, kind of feel like I'm in a fog and ultimately just shut down and do nothing. *As of late, I am finding that I have to really force myself to do simple day to day tasks. *

I guess on a positive note, I will soon be starting an intensive day treatment program at the VA hospital to try and figure this all out. *Just hope I can find someone there who is familiar with RSD and the long term side effects of the*sympathectomy.

It doesn't seem to me that you are on any opiod pain killers. Which most of us end up on. I also started abilify in Oct. for severe depression and it was a GOD send. I felt completely helpless and felt like I was worthless. You need to find a balance with pain relief and antidepressent.'s Keep us informed.

I took 7.5 Vicodin for as long as I can remember, but stopped taking them about a year ago when I really noticed something was not right mentally. The thought at the time was that maybe the Vicodin was doing more harm than good, so I switched entirely to Tramadol.

Balance would be nice and it's definitely the ultimate goal.

Thanks again,
Detpas

I am so sorry to hear all that you are going through. I think we all suffer from the mental effects of RSD and chronic pain to some degree. While I don't think that I suffer from depression...I do have difficulty concentrating, barely get any sleep, can't cope well with stress (it actually flares my RSD which is common), and I get snappish sometimes. It's important to remember that our mental health is just as important as our physical health and we can't forget to take care of it.

If the meds you are currently taking are not enough...then maybe try some other ones. There are lots of different ones out there to help with depression and like many things it's about finding the one that works well for YOU. I wasn't getting even 30 minutes of sleep together at night until my doctor put me on amitriptyline...now I usually get 3-4 hours of consecutive sleep a night (sometimes not but most of the time I can at least get 3 hours which is so much better than nothing). Just getting that little bit of sleep has been very good for me.

Definitely discuss tDCS with your doctor. Some people have had success with it treating their RSD but it is also used to treat depression I think. It's pretty affordable as far as treatments go with little to no side effects.

Keep moving and keep fighting. If you can make some progress in physical therapy you will be amazed at how much that can improve your mood and outlook on life. And don't forget to try to do things that you enjoy as much as possible. It will remind you of the good things in life and give you motivation to fight. For a long time last year I couldn't stitch at all because it was too painful...but I was very active online with different stitching forums where I could talk to others and watch their projects come along so it gave me something to work towards. I also can't hardly read books at all anymore because my concentration is so bad...but I have found that audiobooks work out really well for me (and they are usually so much better than anything on daytime tv). Listening to music is fun and even though I can't really dance to it anymore...at least I can sing along as loud as I want. I will sometimes even use songs as my way of timing out exercises like, "I'm going to walk for 5 songs." Or I set up different playlists on my iPod for different therapy routines or to help me relax or whatever. There's a lot of things that I can't do or that I can't do the same way I did before...but it helps to try to keep these things still a part of my life as much as possible to remind myself of what I am fighting for.

Another odd things I did...some people might think this is a cruel thing to do to ones self but I found it motivating...was read travel guides for my favorite travel destination in the whole world...Disney World. I also joined some online forums where I could read about other people's trips, talk about my own experiences, "plan" future trips for myself, etc. Okay...so I am admittedly an odd duck...but it gave me joy and a goal to shoot for in the future. I think if we don't remind ourselves about the things in life that are worth fighting for then it becomes all to easy to stop fighting.

Not saying you need to do any of my hobbies...I know they are not for everyone...but I only give these as examples of things I do to help me cope and stay motivated to fight.

I hope you find success in your treatment. Please keep us updated and ask any questions you want. Or if you just need to vent...we are there for that too. :)

Hi, I am also an RSD'er, I am full body with organ involvement. I do know that my dr said no sympathectomy ever. I do know that over time it can cause Horners sysdrome. Also increase sweating and 9 out of 10 times is the reason for spread in many RSD'ers. Which increase sweating will cause the flush and I know for me due to the RSD spreading into the face I fall often to due my Equilibrium being off. As you I also stay very depressed. I take Remeron and Cymbalta which helps but my dr just put me Mexiletine which has actually helped somewhat. We do need to gradually go up on the dosage. Then ofcourse there is the baclofen for spasms and the pain meds. I am also on chewable Tegretol as my neurologist says that it works faster. I'm not sure if this has help any but if you need any information I am a mentor for the RSDSA. Go to there website and contact Mr. Jim Broatch. He will help you with any information you may need. I do hope that you fine your answers and that everyone has a low pain day/night

Dear DETPAS -

Sadly, cognitive changes go with the territory of RSD/CRPS. Roughly 2/3 of CRPS patients will exhibit a loss in "executive functioning," attentional, planning, and/or organizational skills, while of that group, a third of them will have memory issues of one sort or another, leading to a diagnosis of something referred to as "global cognitive impairment," NOT to be confused with dementia. Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J, et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73. Epub 2010 Mar 19. And significantly, those results were INDEPENDENT of any medication patients happened to be on.

In addition, the portion of the cortex that directly receives signal input from the thalamus, the "Anterior Insula" (AI) - the health of which is associated with ease of emotional regulation - has been shown to be significantly impacted for the worse in CRPS patients, with a marked loss in cortical thickness. The Brain in Chronic CRPS Pain: Abnormal Gray-White Matter Interactions in Emotional and Autonomic Regions, Geha PY, Baliki MN, Harden RN, Bauer WR, Parrish TB, Apkarian AV, Neuron 2008;60:570-581.

The good news is that a number of studies have shown that the "cortical reorganization" of CRPS is apparently reversible with treatment. To that end, although the observation was made in a different patient population entirely, the use of tDCS has even been associated with the recovery of proper nouns. Improved proper name recall in aging after electrical stimulation of the anterior temporal lobes, Ross LA, McCoy D, Coslett HB, Olson IR, Wolk DA, Front Aging Neurosci. 2011;3:16. Epub 2011 Oct 12.

And for what it's worth, I'm unaware of any cognitive issues associated with lumbar sympathectomies. Typically, the problem was that they just stopped working after a couple of years. That, and people have reported secondary pain of the sort you experienced, on account of which they are essentially no longer performed today.

I hope this is useful.

Mike