[wbrianiii]

It all started when I was in the US Navy. In Jan. 1979, while preparing to drop anchor at Karachi, Pakistan, I got a length of the ships' anchor chain dropped on my right foot. Being on a destroyer, we were not equipped to handle such major injuries. We were there by ourselves, no capital ships with hospital facilities with us, and we weren't advertising to the world that we were in the area. The ships' Medical Officer was a corpsman chief petty officer, and while he told me I could see a doctor in town, he also offered his opinion of the state of Pakistani medicine at the time. The general consensus was that they would amputate. I wasn't ready for that then, so it healed poorly, and I limped around on a bad foot for the next 29 years.

In Dec 2007, while relaxing on a weekend, my bad right foot began to hurt, a lot, much worse than "normal pain." By Monday it had not let up, so I went to see my doctor. Eventually the podiatrists removed the sesamoids from that foot, and fused the end joint of the big toe. A year later they were forced to remove a screw, as my body was rejecting it. There has been all sorts of physical therapy, exercises, everything imaginable. The pain finally got so bad that in April 2014, they attempted ti kill the nerves with alcohol injections. There were to be 7+ injections, but the third one went terribly bad. It felt like he injected sulfuric acid, and when he was done, I had to look at the end of my big toe to be sure the end wasn't blown out. That was the day the burning started, and it hasn't stopped since. They attempted to surgically release entrapped nerves, but there was so much scar tissue from the original injury, they said there was not much they could do for me. I was sent to the pain clinic, where they did a lumbar sympathetic nerve block. There was to be a series of 3-4 to see if I was a candidate for a SCS. The 1st one only made the pain worse, so that idea was scrapped. I went back to my podiatrist and asked them to amputate. They sent me to orthopedics to see about it, saying they had exhausted all forms of treatment, and with a diagnoses of CRPS, causalgia. That was last Dec. They didn't do it. They sent me from Loma Linda to Long Beach for a 2nd opinion. I was scheduled for below knee amputation last June, but a week prior to the date of surgery, they cancelled, with no reason given. I am back at Loma Linda, and have an appointment with the pain clinic next week. I have made it very clear that I am not going to repeat anything that has already been tried and failed. My pain is now such that I have difficulty wearing socks and shoes on that foot, and I cannot have a top sheet over it. It is affecting my sleep, as the pain sometimes wakes me up at night. I haven't walked without a crutch since 2008, and since 2009 I have worn out 3 wheelchairs. I now use a rigid ultra-light weight chair, and just had all the tires, wheels, casters, seat cushion and upholstery replaced. I still have a diagnoses of CRPS type 2, but it has also been called type 1 and RSD.

[DejaVu]

Hi wibrianiii,

Welcome to NeuroTalk.

First of all, I want to thank you for your service to our country.
I am very sorry you have paid such a high sacrifice for having served.

Sounds like you have been through many years of significant challenges with this injury.

I am not well-versed in CRPS/RSD at this time. I am here learning more about this. I do deal with chronic severe pain/discomfort and limitations similar to yours. I often think about having my feet amputated, as I feel prosthetics may work much better and will cause less pain, I'd hope. Of course, I know of too many people suffering phantom limb pain from amputations. Thus, I am unsure of the best answer for these types of conditions.

Other members will be along to comment more intelligently. Lol.
I had read your intro here and wanted to say hi and thank you for your service.

I hope to see you around the forums here.

Warmly,
DejaVu

[-Spike-]

Originally Posted by wbrianiii

It all started when I was in the US Navy. In Jan. 1979, while preparing to drop anchor at Karachi, Pakistan, I got a length of the ships' anchor chain dropped on my right foot. Being on a destroyer, we were not equipped to handle such major injuries. We were there by ourselves, no capital ships with hospital facilities with us, and we weren't advertising to the world that we were in the area. The ships' Medical Officer was a corpsman chief petty officer, and while he told me I could see a doctor in town, he also offered his opinion of the state of Pakistani medicine at the time. The general consensus was that they would amputate. I wasn't ready for that then, so it healed poorly, and I limped around on a bad foot for the next 29 years.

In Dec 2007, while relaxing on a weekend, my bad right foot began to hurt, a lot, much worse than "normal pain." By Monday it had not let up, so I went to see my doctor. Eventually the podiatrists removed the sesamoids from that foot, and fused the end joint of the big toe. A year later they were forced to remove a screw, as my body was rejecting it. There has been all sorts of physical therapy, exercises, everything imaginable. The pain finally got so bad that in April 2014, they attempted ti kill the nerves with alcohol injections. There were to be 7+ injections, but the third one went terribly bad. It felt like he injected sulfuric acid, and when he was done, I had to look at the end of my big toe to be sure the end wasn't blown out. That was the day the burning started, and it hasn't stopped since. They attempted to surgically release entrapped nerves, but there was so much scar tissue from the original injury, they said there was not much they could do for me. I was sent to the pain clinic, where they did a lumbar sympathetic nerve block. There was to be a series of 3-4 to see if I was a candidate for a SCS. The 1st one only made the pain worse, so that idea was scrapped. I went back to my podiatrist and asked them to amputate. They sent me to orthopedics to see about it, saying they had exhausted all forms of treatment, and with a diagnoses of CRPS, causalgia. That was last Dec. They didn't do it. They sent me from Loma Linda to Long Beach for a 2nd opinion. I was scheduled for below knee amputation last June, but a week prior to the date of surgery, they cancelled, with no reason given. I am back at Loma Linda, and have an appointment with the pain clinic next week. I have made it very clear that I am not going to repeat anything that has already been tried and failed. My pain is now such that I have difficulty wearing socks and shoes on that foot, and I cannot have a top sheet over it. It is affecting my sleep, as the pain sometimes wakes me up at night. I haven't walked without a crutch since 2008, and since 2009 I have worn out 3 wheelchairs. I now use a rigid ultra-light weight chair, and just had all the tires, wheels, casters, seat cushion and upholstery replaced. I still have a diagnoses of CRPS type 2, but it has also been called type 1 and RSD.

Please think long and hard before you let them amputate a limb. (IMO) If the pain is credited to CRPS, that means the pain is the result of a neurological disease. IMO this means that the the pain in the limb is a symptom of what is going on with your Brain, Spinal Cord, and the nerves running through your body. So, if they remove the limb, which has nerves in it, they won't be able to cut the end of the nerve off until they cut it where it connects to your brain (exaggerating to make a point)... In other words, They'll never be able to cut enough off of the end of the nerve that is firing the pain signal, time after time, they could just take more now, more the next time, more the next time. The pain won't go away if it is CRPS. This disease would more than likely find some other way to make sure it lets you know that it is still around, the pain will still be there. Please find a good pain management doctor, if you haven't already. (Once again, I am no medical doctor. I'm only relaying what I've learned after years with my disease, working with my pain management team, and from what I've read about CRPS / RSD. All of what is above is my opinion.)

RSD is Regional Sympathetic Dystrophy, which is the former title for CRPS Complex Regional Pain Syndrome (the medical community's current name for what we at this site suffer from.. And from the sound of it, you are a part of the WE!)

Welcome to the site! The people here are wonderful.


No Pain is Gain ~ My CRPS Moto

[stillsmiling]

Originally Posted by wbrianiii

It all started when I was in the US Navy. In Jan. 1979, while preparing to drop anchor at Karachi, Pakistan, I got a length of the ships' anchor chain dropped on my right foot. Being on a destroyer, we were not equipped to handle such major injuries. We were there by ourselves, no capital ships with hospital facilities with us, and we weren't advertising to the world that we were in the area. The ships' Medical Officer was a corpsman chief petty officer, and while he told me I could see a doctor in town, he also offered his opinion of the state of Pakistani medicine at the time. The general consensus was that they would amputate. I wasn't ready for that then, so it healed poorly, and I limped around on a bad foot for the next 29 years.

In Dec 2007, while relaxing on a weekend, my bad right foot began to hurt, a lot, much worse than "normal pain." By Monday it had not let up, so I went to see my doctor. Eventually the podiatrists removed the sesamoids from that foot, and fused the end joint of the big toe. A year later they were forced to remove a screw, as my body was rejecting it. There has been all sorts of physical therapy, exercises, everything imaginable. The pain finally got so bad that in April 2014, they attempted ti kill the nerves with alcohol injections. There were to be 7+ injections, but the third one went terribly bad. It felt like he injected sulfuric acid, and when he was done, I had to look at the end of my big toe to be sure the end wasn't blown out. That was the day the burning started, and it hasn't stopped since. They attempted to surgically release entrapped nerves, but there was so much scar tissue from the original injury, they said there was not much they could do for me. I was sent to the pain clinic, where they did a lumbar sympathetic nerve block. There was to be a series of 3-4 to see if I was a candidate for a SCS. The 1st one only made the pain worse, so that idea was scrapped. I went back to my podiatrist and asked them to amputate. They sent me to orthopedics to see about it, saying they had exhausted all forms of treatment, and with a diagnoses of CRPS, causalgia. That was last Dec. They didn't do it. They sent me from Loma Linda to Long Beach for a 2nd opinion. I was scheduled for below knee amputation last June, but a week prior to the date of surgery, they cancelled, with no reason given. I am back at Loma Linda, and have an appointment with the pain clinic next week. I have made it very clear that I am not going to repeat anything that has already been tried and failed. My pain is now such that I have difficulty wearing socks and shoes on that foot, and I cannot have a top sheet over it. It is affecting my sleep, as the pain sometimes wakes me up at night. I haven't walked without a crutch since 2008, and since 2009 I have worn out 3 wheelchairs. I now use a rigid ultra-light weight chair, and just had all the tires, wheels, casters, seat cushion and upholstery replaced. I still have a diagnoses of CRPS type 2, but it has also been called type 1 and RSD.

Hi wbrianiii, I would like to chime in with what both DejaVu and Spike wrote. First thank you for your BRAVE service in every way. I'm saddened to hear the great price you continue to pay.

Next In my opinion it is a HUGE blessing the scheduled amputation hasn't worked out yet. All of my understanding of this disease is exactly what Spike talked about, meaning the pain is not just in your foot. It is in your central nervous system. You could not get enough removed. My Husband is a Rec. Therapist at the VA Hospital. The majority of the Veterans he works with are amputees. Phantom limb pain is very real. With that said, as bad as your foot feels, from what I understand amputation is more of a barbaric solution, and I'm glad you found this group first. Like Spike said, you need a really good Pain Management Doctor. I literally just found one a week ago. I searched for years. Read through if you haven't already the "sticky" on the site entitled "RSD LIFESAVERS." I found that extremely helpful. Please forgive me if I sound presumptuous, but to me, serving our Country the way you did already puts you in the Brave category in my book. You can do this! We all have different stories of how we fell prey to this disease, but the more you read, the more you will see how similar we all are. "Don't give up hope. Hope is never lost."

Sent from my XT1028 using Tapatalk

[BioBased]

Brian,

A great big welcome to you: !

Please investigate low dose naltrexone here and on the Internet ASAP. Dr. Pradeep Chopra, one of the CRPS/RSD leading experts, is a strong supporter of this therapy. Please watch his 2 hour You Tube video. You have nothing to lose and everything to gain from the information.

Also there are recommended supplements for RSD. NAC and R alpha lipoic acid. I take these as well as magnesium, rutin, C, malic acid, milk thistle and B12 methylfolate.

DMSO is another beneficial weapon to have in your arsenal, along with Epsom salts and magnesium oil/lotion. DMSO is especially effective for hot CRPS, it is also good for bursitis and other aches and pains. I used a 50% cream, but I have read it is better to dilute the 100% to 75 with glycerin. DMSO is sometimes sold at farm supply stores.

How do you keep the bedclothes off your feet? I used a stool and then later my sister gave me a table thingie that could be wedged between my mattress to hold the sheet, etc off my feet.

Hypnotherapy, biofeedback, meditation, gluten free-paleo diet, yoga-chair, all are recommended. Watch YouTube videos-free intros into these therapies. Look at Tong Ren-very strange. Massage, myofascial release. Acupuncture does not get high marks, it is expensive. I liked it, but the relief it provided only lasted a few hours.

Has anyone told you that you could have muscle knots called trigger points?

Does the VA offer pool therapy? Littlepaw mentioned infared sauna as being helpful, too. Amazon sells a German made infared device fairly cheap. The reviews are excellent. People recommend paraffin wax treatments, too.

I bought two little exercisers that I put in front of my couch to keep my blood flowing and build muscle. One is called InMotion, the other is WonderCore Smart. IMO money well spent.

[PurpleFoot721]

Hi wbrianiii and welcome to this forum.

As the others before me have said, Thank you for your service to this country and sorry that it was at such a great expense.

I am fairly new to this forum myself and am still learning quite a bit about CRPS myself. I can't actually say what the best treatment option is for you as it is different for everybody. I'm sure plenty of other members will give their experiences. It's a great community here. What I can say is amputation should not be considered unless it is absolutely necessary, such as sever infection that can not be controlled, gangrene and so on. As Spike said, they will never be able to remove enough of the nerve that is causing the pain. It also leaves the potential for it to increase in intensity or even spread. Look into other treatment options from a reputable pain management doctor, and make sure they are knowledgeable in treating CRPS/RSD.

Myself, I was originally injured back in 2003, when I fell from a roof that left me with a shattered talus, trimalleolar fracture and several torn ligaments and tendons. After 4 surgeries I ended up here. I don't know exactly where along the line I ended up with CRPS but I have often wondered myself if I should have had an amputation long ago. As you have read in my 1 and only post so far, I am still struggling to find the treatment that works for myself. I too am unclear as to whether or not I have type I or II as my doctor has given prescriptions that state both at one point or another. I have found that a combination of gabapentin and amitriptyline has helped a little but not enough. I am sure others will mention what treatment have helped them the most but as I said earlier we all respond differently to different treatment.

Once again, thank you, to you and all the other brave men and women that have given so much for this country.

[Littlepaw]

Hello and Welcome,

I wish so much that there was something I could say or do to bring you comfort for the pain you have endured and sacrifices you have made. The best I can say is that I know we are all carrying you in our hearts and sending much love your way.

It is especially challenging when a foot or hand is just mechanically messed up and can never work the same way again. I know personally how difficult scar tissue on nerves can be and there is only so much they can do. I just received round three of steroid injections to my surgical fields to try to reduce scar pressure on the nerves of my foot and ankle.

Have you had ketamine infusions? I and others have found those helpful. Lidocaine infusions can be good as well.

What do you do to take care of yourself physically? I have found exercise to be indispensable for mood, circulation and overall well-being. I just feel so much better when I work out to the degree I am able. Since I just had my foot injected I am back to staying off it for a bit. Yesterday's session of upper body work and a nice long swim was quite nice.

*** I only say the following because I understand that you are desparate to get out of your pain and Obviously you are considering even the most dire possibilities for this***. If, God forbid, it comes to the point for you that an amputation is re-considered I would encourage you to go the absolute best surgeons, possibly plastics reconstruction people who deal with trauma and know how to handle things like flaps and cutaneous nerves. They will have the most experience and understanding of how to handle nerves to minimize neuroma, how to transfer fat to reduce pain, etc. Make sure you know exactly what they are going to do, that it is the most current certain way to prevent complications and that appropriate blocks or ketamine are given pre, peri and post-op.

There, please don't take that as agreement on my part. I do NOT want you to lose your foot and share everyone's concern about ongoing pain. However, in the tragic event that ends up being your path I'd rather you had the best procedure possible.

Please let us know how your appointment goes and please do look at all available options before deciding on something irreversible.

sending hugs and healing love,

[mama mac]

wbriamiii,

Just wanted to welcome you to the group. As the others have thanked you for your service and sacrifice, I thank you as well. It sounds as though you have been through years of pain with this injury and now have CRPS as well. You have tried many different treatments to resolve the issues as well. Most of the members above have offered sound advise to consider regarding the amputation of a CRPS limb. The question is finding a treatment that will offer you some refief w/o causing more damage. A re-evaluation is probably in order and I hope it will provide some new options. I hope you will become a regular member of the group and find it as helpful as I have (I'm new too.) ~mac