Sympathetic Block Questions
 

Hi Everybody,

I am new at posting to this forum but have been following the occasional discussions since June when my Orthopedic Surgeon first suggested that I might have CRPS.

In January of this year, I had surgery to fuse both the subtalar and the tibiotalar joints in my right ankle. The surgery resulted in a non union on one of the joints and because of that, I am still unable to put any weight on my right foot.

I was officially diagnosed with CRPS, in late July by my pain management specialist, but by the time I had my first appointment with him, it had already spread throughout my entire body. On my good days, I feel like I have a bad sunburn on my shoulders, neck, upper back, arms and legs. On bad days, all I can do is sit on the very edge of the couch, try not to touch anything, breathe and hope that the meds will help.

I am now taking 600 mg Neurontin 3 times a day, 50 mg Elavil at night and 10-325 Norco as needed, which on days like yesterday was too much. I don't like taking the Norco as it does very little, but very little is better than nothing.

Yesterday, I saw my PM. Since the meds are doing so little for me, he asked me if I would be willing to try a lumbar sympathetic block. He also recommended I see one of his colleagues for a second opinion, to talk to him about the possibility of the blocks and the possibility of a spinal cord stimulation device. I am also seeing a 3rd specialist outside of this office on my primary care physician's recommendation.

This is where I am looking for advice from everyone here. I know that the blocks can help, especially if done early on. At this point though, will I have any benefit with a lumbar sympathetic block, which is only treating the original site, or am I already too late for that now? What are the chances of this causing more problems for me everywhere else?

Looking for your experiences...

Hello and welcome aboard. Hope you are having a less pain day today.
For me, I was told that the block will not help me. 10 years Crps2. However, there are others that this has worked, is still working.
With that being said, I am happy to hear of second opinions and extra doctors evaluations; sounds like you've got a great medical support....
Please with whatever decision you make, keep us updated. Successful or just venting.
Keep up the fight.:grouphug:

Hi and Welcome,

I am glad you found us but so, so sorry you have to be here. It is terrible that you are going through so much and having symptoms spread.

Literature on blocks is variable. They are not curative. Some will find relief and some won't. I think it is really up to your own comfort level. You are not so far out in this process that it seems too late for something to help. Maybe calming the area will help the nervous system overall settle down. I would ask what they put in the injection. Steroid mixed in will carry the results longer than pure anesthetic. I have even read of a small amount of ketamine being given in the injection.

Have they mentioned a possibility of trying infusions of ketamine or lidocaine? Sometimes alpha blockers are used. There are current trials for neridronate going on and the locations have become pretty numerous. They could try oral steroids to knock down inflammation. There are a lot of options. I found better relief with tramadol than other pain meds. Keep trying new things, just be methodical so know what was what.

What has been said about your non-Union? Ongoing pain contributors need to be addressed if at all possible to give you the best chance of recovery.

Please take care of yourself and don't give up hope. Improvement may come very slowly and with tremendous dedication on your part, but it can and does come. Get in a pool to exercise since you can't weightbear and keep on top of any gentle range of motion you are able to do. It all helps in the end and will help you feel better overall. I spent nine months on crutches and the pool was my savior for swelling and other aches and pains for body mechanics gone whack.

come and let us know how you are doing and when/if you decide to pursue blocks so we can send good vibes.
Sending healing love, :hug:

Thank you Enna70 for the quick support!

Littlepaw, I see your posts quite a bit and figured you would chime in at some point. Thank you as well for the quick support and information. Having spent a lot of time reading through the RSDHope website, I was already aware of the neridronate trials, but at this time, there are no trials going on in my area. I will keep looking though. They are bound to come to Detroit eventually. As for the Tramadol, it works better for me than the Norco for some odd reason, but it gives me unbearable headaches.
As for the non-union, the Ortho that I am seeing wants to try calming the CRPS imflamation down figuring that it will allow me to gradually increasing my weight bearing and might help the bones fuse better. The other option that he mentioned was the use of a bone stimulator which he is trying to track down for me as we speak. As far as keeping it moving, That is the issue my PM is having. Since the ankle is completely fused, There is no ROM that can be obtained in my ankle. That along with the fact that this 13+ year old injury caused a slight loss of motion in my toes back then, there isn't a whole lot of movement that I can do. I do have a short list of exercises given to me by my PT that I attempt, when the pain allows, but that usually causes a severe flare that lasts for a week to 10 days, which is getting me nowhere. My PT wants to help, but my insurance limits PT to 90 consecutive days so I am left with trying to do things at home. Trying to use a pool is tough. I wouldn't dare taking the chance of using a community pool and the only people I know that had one are my parents. They sold their house that had a pool 2 years ago to retire 3 hours outside of the city. I wish it was closer because they moved to a nice peaceful area with a sandy beach, but I have a hard enough time riding in the car when my husband takes me to the doctors office 30 minutes away let alone trying 3 hours.
The idea of ketamine has not been brought up yet but my Ortho has brought up the possibility of lidiocane. He was supposed to bring that up with my PM but I think we both forgot. Guess that's another thing I will ask about.
All the other information that you brought up are great information to ask my PM next time I go in.

Sorry to hear about the range of motion trouble. I feared that was the case. Bone stimulators are helpful. My mother had one for a major spinal surgery. I wouldnt give up on the pool as it might be one your best resources for movement. I found even swishing around in there with a buoyancy belt helpful for swelling and circulation. I know it is hard getting back and forth. Could you check YMCAs, gyms, community centers or even sometimes assisted living/retirement communites for one with kind of quiet hours off-time that you could go? Often they will allow a pay per visit situation. Especially if you are on crutches. ;)

If you are burning through PT hours without much gain on land they could maybe order aqua therapy at a nearby center or hospital pool.

Be sure to check out Dr. Pradeep Chopra's video on youtube "CRPS Diagnosis and Management" for two hours of tips and treatemnts from a rational, well regarded specialist.

I hope you find relief soon!
:hug:

Hi Purplefoot,
I don't know that I have many suggestions at this point, especially since you have many complications. Only 4 months in I would usually say the lsb's were worth a shot (literally), but with full body developing so rapidly I don't know. The good thing is it sounds like you have a full team of doctors with 2nd and 3rd opinions lined up. Hopefully they can offer you a full range of options to choose from. The Chopra video is excellent if you haven't seen it, as far as reviewing what options are out there and his opinion on each. Just wanted to welcome you this is a wonderful group to be a part of. Hope to be seeing more of you. Mama mac

Thank you mama mac
Your thoughts about having them done 4 months in, even 6 month in, are exactly what I thought, and is why I finally decided to reach out to everyone here to here there experiences. Seeing as I am already about 8 months into when I first recall having symptoms, and the fact that this is spreading so aggressively, I wasn't sure if they would help or not. Last night, it did dawn on me that if nothing else, if they can give me close to 2 weeks or more relief at a time, I think they are worth trying in an effort to strengthen my right leg and get off these crutches, even to just to get back to a cane.
As for the Chopra video, I don't remember seeing any of them yet. I will definitely check them out.

Link to the Chopra video https://youtu.be/s3LKhOZ8mAM Beat wishes, mac

welcome purple. sorry you have rsd but this is a great group to be a part of because you will get plenty of great advice, caring and support. i have had rsd/crps I for almost five years and tried blocks the first six months. they didn't help much. i am on similar meds as you are now. gabapentin (neurontin) 600mg 4x daily and strong pain killer but with 5/325mg instead of you 10/325mg taken as needed. i don't know what elavil is but also take antidepressants and antianxiety meds to help me deal with the constant pain from rsd. as for scs i don't want to even consider that unless its a last resort. my neurolgist and gp said not to do it and my pm said to do it. i decided not to do it because i was told there could be complications like infection if i tried it and i didn't want to take the chance on getting worse or getting spread if the odds of it helping were like 50/50 if that. i am not a dr but this was my decision. everyone is different and has different opinions and what works for one doesn't always work for the other but the meds are helping manage my pain for now so i'm sticking with them. i hope you find something that helps manage your pain better soon. maybe you need to increase the neurontin (gabapetin) and pain killers. that helped me. let you dr know that if you want to try it. sending soft hugs your way.:hug:

Thank you mama mac for that link.
Thank you RSD ME as well

Elavil is a brand name of amitriptyline. From what I have read, it seems to be used most commonly as an antidepressant but also works well for nerve related pain.

When I met with my PM Tuesday, he increased both the Elavil and gabapentin to the levels I am at now. So far, my pain levels have decreased since then but that has happened the last time I had an increase in my prescriptions for gabapentin and amitriptyline before my pain levels jumped back up again. Maybe that means that we're getting somewhere but I don't know. All I can say is that I am not enthused about the idea of any procedure being done whether it be LSB or SCS or anything else, so I hope that meds can help get me to at least a bearable level for a reasonable amount of time

From what I have heard so far, including scanning through older posts, it doesn't sound like the blocks give enough relief for long enough to make them worth while. I am still hopeful that someone might chime in and say otherwise. I realize that everyone is different, and if there is some sort of success story from it, I'm willing to at least try.

Hi,

I am reluctant to speak for someone but I seem to recall Lit Love getting benefit from SGB. I believe that she still gets them on occasion or has in the not too distant past. She is not a newbie at this so that could be encouraging. Perhaps she will see this and chime in.

:hug:

Purple,

So sorry to read about your ROM issue, I understand, because just before I stopped walking, I had drop foot in my left foot and very little ROM in my right.

I did not read your thread until today, because I know nothing about blocks, but I can tell you getting into a pool and walking was the best way to augment PT. I was delighted that I could easily walk and march through the water. Yesterday, I visited a public pool a few towns over from me that has a parking lot close to the entrance, no STAIRS to climb and two friendly and helpful lifeguards. The water was not quite as warm as I would like it, but it was not heavily chlorinated. And the admission fee is $4 a session, or $50 for 3 months, so far my most affordable option.

I understand your reluctance to use a public pool, but you might find as I did that the lifeguards may be interested in helping you. The ones I saw yesterday offered to help me into the pool should I need it, I don't. They told me the times of lowest use, as well.

My town's public pool is expensive, has stairs and lousy parking, but I will try it out once, because of proximity and my parking placard. The local Y's are 45 a month, but they do offer more than the pool. I am going to investigate them as well, because I could use the treadmill. These are senior fees btw. It shocked me to find there are no options for the handicapped.

I try to drag myself around a store once a week, by supporting myself on the wagon. Yesterday when I did this, it was much easier, although my CRPS leg swelled up and turned purple.

Also I massaged my legs and feet constantly before I took LDN and I used an infared heat massager on them. I read somewhere that it helps to talk to your RSD limbs while you interact with them.

Thank you BioBased,
I got a good laugh out of that one!:laugh:

I do know that many of the high schools around town offer the use of their pool for those that are a resident of the school district for a small fee. Maybe I could convince one of them to waive the residency restriction for someone in need. Otherwise, as I am writing this, I did look up one of the local YMCA websites. I did see that they have several shallow water exercise programs scheduled every day of the week, as well as adult open swim Mon. - Fri. at a time when most people would be at work/school. Hopefully there fees aren't too high. Otherwise I would have to look for other options. I haven't been able to work since my surgery in January, and my husbands business hasn't been doing very well lately so money is very tight. Small fees for the use of a pool I can afford as I know how beneficial it can be for strengthening of the limbs. I will make sure to call around over the next week to find a pool to use.

Today I am actually doing very well. The only place that is really bothering me is my ankle itself. A lot of electrical sensation and that feeling as if my ankle is being clamped in all directions, but that's good in my opinion. Going to try some simple exercises today and hope it doesn't cause any problems for me later

Purple,

I am glad I made you laugh! I thought talking to my RSD limb was hilarious too, but I figured it couldn't hurt me to do it. I told my leg to get better, I told it that it needed to be warmer and that it was still a part of my body, even if it felt like a dead mackerel.

I also found it helped me to warm my leg before I stretched anything and to warm the massage lotion before I used it.

I hope you find a pool. I was able to walk, hop and march in one today. It was awesome.

I wish We knew where the talking to the limb info came from! I have done something similar, usually when I start getting the stinging in my foot. When I was at my worst I had really started hating my foot and contemplating if I'd be better without it. So sad! Then one day it occurred to me that my foot could not get ANY better if I didn't love it. So I took ownership of it by talking to it very gently when it would flare, saying things like, "ssshhh, hush foot, it's okay, you're okay" like it was our dog during a thunderstorm. It made me feel better and more loving. I can understand that feeling you read about of being "disassociated from the limb".

Now that I've made improvement I find myself talking to my foot on occasion still, but more like an ornery young child "Foot! come on now, you're okay." Then I'll rub it and say something like "there, see? You're fine. Good foot. We can do this."

Sorry, I know, I know... we're off topic and it sounds so crazy but I really think this behavior has helped me stay more connected to myself. It IS funny. :D

I think it comes from the heart....do you think our bodies want to be hurt? They heal (as best as they can), when they break or cut....so what makes us think the foot or injured flare is something it wants to do?. Our bodies are reacting.... So being kind and saying it out loud may sound funny, but it is consoling.
Remember when little and a high fever any kind word gave us a comfortable feeling.
So to everyones monster....hush tonight.... Give us back for a few moments what used to be ours.:grouphug:

I completely understand where your coming from now. I do remember times when I would talk to all my affected parts, especially early when I first noticed it spreading to my hands, saying things like "Oh no you don't.", "Stay away from there." and so on. I now find my self mentally asking my foot to just give me a few moments to do something other than sit or lie around.

I also understand about warming lotion before applying it. Warmth is our friend. One thing that I can't seem to get my husband to understand. He is a very warm bodied person and has a difficult time tolerating anything much over about 75 deg. F. I am not looking forward to this winter as I know the house will be 65 at best with the windows open anytime it's over 50 outside, 40 by February. As I told him last night, I guess I will just have to find a way to stay under some blankets all winter.

I was able to do my at home PT today. First time I have been able to do that in a month. 10 reps each of - Bridging, (a trunk strengthening exercise), knee extensions with 3lbs, knee flexion with 3lbs, and rocking back and forth standing on both legs applying 55lbs of my weight on my bad leg, (that's all I could tolerate). Wow! It's amazing how weak my right leg has become. My leg is already tired and sore, not necessarily in a bad way, with only a mild flare in my ankle and my left wrist. I did have to take a hydrocodone afterword but it helped. Hopefully, I will be able to keep this up for a few days.

I am relieved to know other people speak to their the affected body parts too. At first I was so mean and angry with it. Often times just in my head, but I also remember screaming at it. I did some reading on deactivating the sympathetic nervous system by activating the para sympathetic nervous system. Many great suggestions: deep breathing, mindfullness, meditation, warm baths, etc Basically, anything relaxing. I figured being yelled at and hated does not deactivate, but escalate. I did start to speak kindly when the burning ot sharp pain increase. I also gently rub the area. I have started driving again and I often tell it to relax. My PT says that when driving our feet tend to stay on guard and that may be one reason why it's so difficult. I really do think changing the conversation we have with our bodies, whether out loud or in out heads, is important. It certainly won't cure CRPS, but I do think what we say to ourselves makes a huge difference. ~mac :grouphug:

Yes, I do still respond to blocks, but IMO they are more well suited to treating a specific area like one limbs or even one side of the face. When you have multiple areas, I'd say that boat has pretty much sailed. I'd have the same concerns with the spinal cord stimulator.

I reacted well to HBOT on spread to my leg months after being in a car accident. If you can afford it, I think it's a great option. If you can try outpatient Ketamine infusions, that is a much much better option than a SCS IMO, and again is more well suited when multiple areas are involved. I am pretty much pain free in warm ocean water, and love swimming. If I could run off to become a mermaids, you all would never here from me again. ;) I think it's a good idea to load up on as many treatments, procedures, lifestyle choices that can help as possible. Try out the RSD diet--it's essentially a version of eating Paleolithic to reduce inflammation. If you get relief from massages, get one as often as possible. Try an infrared sauna--I noticed it helped with swelling. Try Tai Chi or low impact Yoga. Don't your doc introduce more than 1 new med a month. Learn deep breathing exercises and or meditation. If a new area of spread crops up treat it Aggressively! Lidocaine patches are great for this. Baths with Epsom salts or using Epsom salt cream will help reduce swelling. Increase vitamin C. If you respond to steroid packs, have one on hand for emergencies. (I just had a fall a few weeks ago and tweaked my lower back. I had a trigger point injection belatedly but it's helping. Ditto to the steroid pack. I was using Epsom salt lotion and Lidocaine patches, which often are enough, but not this time. I'll schedule a few massages in the coming weeks and might hit the sauna as well. Had I known to try all these my first year after developing the disorder, I'm confident I could have had a good shot at remission...)

I will say that you have to be careful not to be doing things that encourage spread--this is in general and not meant towards any poster. I still have issues with my elbow, shoulder, neck and back from bracing my "bad" hand/arm the first few years after developing CRPS. The meds I'm on mask some of the pain, but the underlying issues are still there.

Thank you everybody who has posted so far on this thread, and in advance for those who intend to post.

Lit Love, I was hoping you would chime in here. Since Littlepaw mentioned your positive response to blocks, I spent several hours yesterday trying to look through your posts and replies to others to find how they have helped you. With such an overwhelming number of posts I was unable to find anything other than your response to Ketamine and HBOT, neither of which have been brought up yet with any of my doctors. I'm glad that you have been successful at regaining your life back, for the most part. It's always nice to hear others success stories.

I have always been good at meditation. I have used this quite often to block out noise, pain, fear, nerves and many other negative issues many times throughout my life. I have never heard of the RSD diet other than the recommendations of Dr. Hooshmand talking about the 4 f's. When my dad was misdiagnosed with having MS years ago, I learned the importance of a healthy diet when you have a condition relating to the CNS. I continue to eat a fairly healthy diet, by no means Paleolithic, but being somebody who loves to cook, I have always done my best to use only fresh ingredients, fresh fruits, vegetables, herbs, and meats, (usually chicken breast, fish and pork on occasion). I tend to stay away from processed foods, but sometimes find them convenient when time is limited or I am not feeling well and rarely do I use dairy. My husband, who has been doing most of the cooking lately does the same. I have been drinking 1-2 glasses of fresh squeezed orange juice daily but I know I could use more vitamin c. I understand that it does wonders for us.

Since I am rambling and getting off topic, I will get back to the purpose of this thread...

I am glad that the blocks do help some people and as I have mentioned earlier on in this thread, I am starting to think that they may be worth a try. At least to attempt to recover my leg strength and get off of the crutches. I know that they wont do anything for the other areas that have been affected by this, only the original limb.

Let me ask this - What's the worst that could happen? Somebody please answer that. I really do have no idea and can't seem to find any answers to that. I have no known allergies, but I have been prone to having issues with bleeding following surgical procedures though. With the last two surgeries, one I nearly bled to death in the hospital when a couple of stitches let loose late at night leaving me very anemic even 2 months post surgery. The most recent I bled enough that they had to change the splint before releasing me. The surgeon put on a compression splint to stop the bleeding, which in my opinion is why I ended up on this forum. This is the reason why I would like to know the possible complications that result from having a LSB done. I seem to be a fairly unlucky person when it comes to any type of procedure being done. I would also like to hear the results of others who have had a block done to know if they work or not.

My life has not returned to normal. I just have gotten good at preventing spread. I think it's worthwhile to see how you respond to blocks. My posts are often about SS. You could search satellite ganglion block or sgb to find my posts I would think.

The downside is they can cause spread. My last one I had a weird reaction that seemed like potential spread in my neck.

I encourage you to have a massage within a few days if you do have one.

Sorry for the brevity, not having a good day. You can always pm me with questions.

Stellate. Ganglion. Block.

Sorry, darn autocorrect.

The worst??
 

I was to have a series of 3 or 4 lumbar sympathetic blocks to determine whether I was a candidate for a spinal cord stimulator. My 1st block made my foot hurt worse, and made it feel swollen to the point of bursting all day long. Thank God it went away the 2nd day, but no further blocks were tried.

This is what I love about our experiences. This monster makes us take risks and yet others prefer another route. But we share what has worked.
Lit Lov I wish you only the very best and thank so much for your posts.:hug:

I am one of the unlucky few who experienced spread after a block. I knew it was a risk but my dr talked me into taking the chance. On the one hand I wish I had not given in because I went from having RSD in my left ankle to having it almost full body after theblock. But I knew the risk going in and was willing to accept that things could get worse. I also know now that even minimally invasive procedures can cause spread for me so I need to stay away from them. A learning experience...but life goes on. The blocks won't kill you and honestly the chance of spread is small.

Aww:hug: interesting because my doctor gave me the option but said I wasn't a good candidate. He said that the block was risky where the shot would be given and that it would work for only eight hours and in that time slot I would have to exercise like crazy...only fo have the pain come back with a vengeance.
He did warn against astrophy and said for me not to try and give into non movements of arm and leg.
But the monster has spread and ldn helps minimum. :grouphug:

It's the short lived part about blocks that worries me. I know I have read that they are short lived somewhere else as well. I realize that everyone responds differently to these treatments but if all I can get out of it is a few hours, than is it worth taking the chance of a spread? Form what I have heard so far, I am still unsure of the effectiveness of the blocks. Guess I can get the opinion of my other PM doctors. I see one on the 29th of this month and another on the 13th of October. I will see what they have to say as well.

Yeah spreading CRPS is no piece of cake....(sugar withdrawal, sorry), but purple please keep us updated with you choices and journey...:grouphug:

I most certainly will. I just uploaded a picture showing the difference of coloration of my legs in the photos thread as well as on my personal page if anyone is interested.

Hi Purplefoot,

I am hoping one day that will just be a strange nickname. ;)

I looked at your photos and my first thought was "gosh that foot needs oxygen!". To me, purple discoloration is a sign of oxygen depleted stagnant blood and O2 starved tissues. My own foot had deep purple at one point. The things that made it look better were elevation, exercise (when I would ride the stationary bike the color would go normal for the time it was moving), swimming or even just doing scissor legs in cool water, very light compression and massage. Granted it went back purple quickly but I always felt the overall picture benefited from blood moving. It brings healing to the area and removes toxins and over expressed inflammatory factors. I know not all of these things may be tolerable right now but wondered if there is any time that the color looks better? If so pursue those things as much as you can. Oh I also found if I used kiniseotape the skin underneath looked normal when I pulled it off. It lifts the skin just slightly which can help with lymphatic drainage.

You might also consider using a jacuzzi tub if you have one or know someone who does that would let you use it. You could try a foot bath that moves the water. I actually saw a study that was specifically on the use of jacuzzi for acute CRPS and people had improvement. You could play around with temperature and find what is helpful.

Anyway, just some thoughts. I hope you have a restful night.
:hug:

I have had blocks that stopped spread to new areas, I've had blocks that lasted several months, often the magic number seems to be three weeks, and I've had a few that lasted just a day. Technique of the doc makes a BIG difference.

Thank you Littlepaw,

Keeping my foot elevated and gentle massage are the only things that I have found so far that keep my foot from turning that awful purple color, and the only things that my doctors have recommended so far. It doesn't go to normal, at best it looks like I have a sunburn but that's better than purple. I have been in for doppler scans and CT scans to make sure that blood flow is normal and that there are no clots. Other than an issue with a non union of 1 joint, they all came back normal believe it or not. Although my hands don't get nearly that bad, keeping them moving as much as possible keeps the blood flowing and also keeps the skin color fairly normal. It doesn't take the pain away, but I do think that being able to keep them moving has helped keep the pain levels at a lower level. As for a Jacuzzi, my next door neighbor has one. Since we share a yard for our dogs and to have a park like setting, I'm sure that won't be an issue. I will also look into kiniseo tape. I have never heard of it until now.

Lit Love,

I was just wondering, how far along were you when you had your first blocks done? I ask because, with the reading that I have done, they need to be done in the early stages and preferably within the first 6 months to be effective. I I first noticed symptoms back in January so I am 8 months into this. That, along with it being so aggressive and already spreading to other areas is why I am so hesitant on having them done, and why I am asking for others experiences.

It's been so long, but maybe 2 years or slightly under. The first round were not done well, and I still had weeks of relief. I responded well even after 7 years or so, by a doc with amazing technique (former spine surgeon). my arm no longer seems to respond to them. (Just had one for my jaw.)

I find it interesting about the massage and elevation. To this day, my foot looks pretty normal when I have it up. In the morning it looks great. If I just never, ever had to put it down! Gravity is just too challenging. Granted, the color is MUCH better than a year ago but it is still off routinely, just not as dramatic.

I am so happy to hear about the jacuzzi! I'd get in that sucker as often as possible and find a spot where your foot feels okay. I hope it is pleasant and not painful. See If your neighbor will let you play with the temp a little if needed. The study noted reduction of allodynia and hypersensitivity from the jet action of the water.

Let us know how that works. :hug:

I want to mention I had a ton of swelling in my neck and upper chest and used Epsom Salt lotion and it took care of the swelling over night.