[Lwalls]

3 weeks ago yesterday I had surgery on my foot to remove a neuroma that has plagued me for nearly 10 years.
I have horses ,and I could no longer tolerate riding very long, or even standing in a stall to groom. I couldn't walk with out a tremendous amount of pain. I could only wear one pair of shoes comfortably ( I'm sure you'll ask so I will tell you now...It was a pair of Sketcher Shape Ups, and I HIGHLY recomend them) So, I FINALLY opted to have the surgery.

The surgery is routine. I picked a very qualified doctor to perform it, after doing much research. I had it on a Friday and was supposed to be able to walk ( limited) right away. My plan was to go back to work the following MOnday, however that didn't happen.

Saturday morning I woke up with excruciating pain in the area where the nerve had been removed. It went on like this all weekend. I took my vicodin, but the thing was...my foot ONLY hurt if I tried to USE it. It never hurt at rest. Monday I called the doctor. He was afraid the bandage had become too tight. and advised me to remove the cohesive part of the bandage. I was to follow up with him on Wednesday. Wednesday came and there was no imporvement. The doctor is stumped. He says he has never had this happen in all the years he has been treating feet. He changes me to Darvocet. Again my foot only hurt when I attempted to walk on it. I did swell though, and had a fair amount of bruising, which of course we all contributed to being post operative and normal. The following week I was to see him again. This would be on a Monday. Still no significant improvement and the doctor is obviously worried at this stage. he leaves the office to do several telephone consults with other doctors, including an orthopedic surgeon. They all tell him to "wait and see". I am sure by this point, everyone who was NOT my doctor was assuming I was just being a baby. I, on the other hand, knew that I have an incredibly high pain tolerance. So what I was experiencing was NOT NORMAL! He changes me to Mobic, and says "lets give it till Monday and see what ahppens then." MOnday evening my foot is very swollen and red. I had developed POCKETS of fluid along the outside of my ankle. I iced it and went to bed.
The following day was more of the same. Tuesday eveing the pain was worse, and so was the swelling. I was sitting in the recliner and fairly suddenly realized that when I FELT like I was moving my toes...they were NOT responding! Then I realized that I could NOT flex my foot up. I tried like hell, but my foot wasn't moving and my ankle as turned to the side. I could not restore my foot to a normal position no matter how hard I worked at moving it! Of course I was freaking out, and imagining a life with out walking or Riding a horse again. Because I was in panic mode, and having a melt down, I waited until the following day to phone my Dotor.
We talked about a couple of different scenarios, and possible diagnoses. I told him about the inability to move my foot the night before ( which ironically I could move a little the foloowing day). He called me back in two hours. He had spoken to a nerologist wtih experience in trating CRPS. He made me an appointment for the following day.
The neurologist looked over my foot, and was 90% sure we were dealing with CRPS. He said he had never seen it in such an early stage, and had high hopes that I would have a complete remission because it was caught so quickly. He perscribed Prednisone ( 60mg for 3mo) and calcium replacement via nasal spray.
It has been just over a week and in the past 4 days I have been able to put weight on my foot! It still feels electrified at times, but I have tried to convince my brain that I can beat this! In the past 2 days I have been able to walk ( VERY SLOWLY and somewhat painfully) with out the crutches.

I am to begin Physical Therapy on Tuesday.

I have terrible terrible pain ( i'd give it a solid 8) in my calf. I am not sure if this is a symptom of the CRPS or if it is from the lack of use in the past several weeks. Nothing seems to relieve it, and it almost feels like a giant muscle cramp. I have tried massaging it, and tub soakes...to no avail. ON a positive not, my foot feels GREAT compared to where I was with it just a week ago.

I am 32 years old. I am hoping to have complete remission! Does this happen? I am so thankful to God thatthis was caught early. I can't imagine the torture that goes along with having this daily, and infinitely.

Thank you so much for your site, and I will try to keep you updated!

I also posted this in the new member area before I realized there was a seperate CRPS thread.

[keep smilin]

Originally Posted by Lwalls

3 weeks ago yesterday I had surgery on my foot to remove a neuroma that has plagued me for nearly 10 years.
I have horses ,and I could no longer tolerate riding very long, or even standing in a stall to groom. I couldn't walk with out a tremendous amount of pain. I could only wear one pair of shoes comfortably ( I'm sure you'll ask so I will tell you now...It was a pair of Sketcher Shape Ups, and I HIGHLY recomend them) So, I FINALLY opted to have the surgery.

The surgery is routine. I picked a very qualified doctor to perform it, after doing much research. I had it on a Friday and was supposed to be able to walk ( limited) right away. My plan was to go back to work the following MOnday, however that didn't happen.

Saturday morning I woke up with excruciating pain in the area where the nerve had been removed. It went on like this all weekend. I took my vicodin, but the thing was...my foot ONLY hurt if I tried to USE it. It never hurt at rest. Monday I called the doctor. He was afraid the bandage had become too tight. and advised me to remove the cohesive part of the bandage. I was to follow up with him on Wednesday. Wednesday came and there was no imporvement. The doctor is stumped. He says he has never had this happen in all the years he has been treating feet. He changes me to Darvocet. Again my foot only hurt when I attempted to walk on it. I did swell though, and had a fair amount of bruising, which of course we all contributed to being post operative and normal. The following week I was to see him again. This would be on a Monday. Still no significant improvement and the doctor is obviously worried at this stage. he leaves the office to do several telephone consults with other doctors, including an orthopedic surgeon. They all tell him to "wait and see". I am sure by this point, everyone who was NOT my doctor was assuming I was just being a baby. I, on the other hand, knew that I have an incredibly high pain tolerance. So what I was experiencing was NOT NORMAL! He changes me to Mobic, and says "lets give it till Monday and see what ahppens then." MOnday evening my foot is very swollen and red. I had developed POCKETS of fluid along the outside of my ankle. I iced it and went to bed.
The following day was more of the same. Tuesday eveing the pain was worse, and so was the swelling. I was sitting in the recliner and fairly suddenly realized that when I FELT like I was moving my toes...they were NOT responding! Then I realized that I could NOT flex my foot up. I tried like hell, but my foot wasn't moving and my ankle as turned to the side. I could not restore my foot to a normal position no matter how hard I worked at moving it! Of course I was freaking out, and imagining a life with out walking or Riding a horse again. Because I was in panic mode, and having a melt down, I waited until the following day to phone my Dotor.
We talked about a couple of different scenarios, and possible diagnoses. I told him about the inability to move my foot the night before ( which ironically I could move a little the foloowing day). He called me back in two hours. He had spoken to a nerologist wtih experience in trating CRPS. He made me an appointment for the following day.
The neurologist looked over my foot, and was 90% sure we were dealing with CRPS. He said he had never seen it in such an early stage, and had high hopes that I would have a complete remission because it was caught so quickly. He perscribed Prednisone ( 60mg for 3mo) and calcium replacement via nasal spray.
It has been just over a week and in the past 4 days I have been able to put weight on my foot! It still feels electrified at times, but I have tried to convince my brain that I can beat this! In the past 2 days I have been able to walk ( VERY SLOWLY and somewhat painfully) with out the crutches.

I am to begin Physical Therapy on Tuesday.

I have terrible terrible pain ( i'd give it a solid 8) in my calf. I am not sure if this is a symptom of the CRPS or if it is from the lack of use in the past several weeks. Nothing seems to relieve it, and it almost feels like a giant muscle cramp. I have tried massaging it, and tub soakes...to no avail. ON a positive not, my foot feels GREAT compared to where I was with it just a week ago.

I am 32 years old. I am hoping to have complete remission! Does this happen? I am so thankful to God thatthis was caught early. I can't imagine the torture that goes along with having this daily, and infinitely.

Thank you so much for your site, and I will try to keep you updated!

I also posted this in the new member area before I realized there was a seperate CRPS thread.

Dear Lwalls....

We are here to help you...Your whole ordeal sounds way too familiar to me..only mine was my rt. knee and now has spread to my whole body..and internal.. and when you said infinately and everyday..that is exactly waht it is and I hope you will only have a short glipse at this 4 headed aniaml so far for me it has been almost 3 yrs. , I was diagnosised on 45th bday!! UGH x 2!
Anyway, yes if caught early your neuro. was right in that with aggressive pT and treatment you can go into remission fully understanding there is no cure, I am sorry.. but you need to stay on top of this NOW and treat with your neuro. closely..Do not use ice/cold..makes it worse and as painful as it is ..you have to move thru your pain..Get an active plan..in attaching your RSD and move fast..possibly you can keep it at a low level or remission... Bless you my friend as this is no fun..I can tell you up front that you need to treat this nnow..read abunch and lean on us for help and education and support..Many who don't know about this have NO idea... Now that you have a neuro. who has knowledge about RSD...keep him treating you and best wishes!!

Hugz, Your friend, Kathy

[Rrae]

Welcome from one horse lover to another! They are precious aren't they!
I'm glad you've found this wonderful forum and you will get much support and caring folks here.
I'm SO glad to read that you've found a Neuro who is familiar in RSD and taking an aggressive approach!
Best of Luck to you!

It's nice to have you here!
Rae

[daniella]

Hi welcome to the boards though I am sorry about your pain. Did the neuro suggest you see a pain management doctor? I agree about the no ice for RSD. Though for the recovery from surgery maybe they suggested that. For the PT make sure the person who is working with you deals with RSD a lot.

[edever34]

Just wanted to say Welcome! Let us know how you are doing.Fondly-Carol

[sukadog]

Hi!

It's great that you found understand drs right away. Never worry about others thinking you're "being a baby"; as much as possible, surrond yourself with people who are supportive, and be gentle and patient with yourself.
just an idea...I haven't tried this myself, but perhaps you may want to ask your dr about hyperbarc oxygen therapy; as it might be most effective early on?

[Skooz]

I am so sorry to hear of your diagnosis, yet so thankful that you were diagnosed so quickly. There is evidence that treatment within the first 6 months of onset of RSD makes a significant difference in the long-term outcome. In addition to this site, the RSD Association and their website provide an excellent resource for newly diagnosed patients. I encourage you to find the top RSD specialist as quickly as possible. This may be a pain management specialist or a neurologist, or a pain management center affiliated with a teaching hospital. It is important that any physical therapy be done by a PT experienced with RSD and done only when your pain is managed. There are many treatments available to you - pain blocks, spinal cord stimulators, medications taken in combination to manage you pain - that a qualified specialist will pursue aggressively. I can relate to the loss of being suddenly unable to do something you love due to the onset of RSD. One RSD friend said it best with these words, "When I awoke from surgery, God handed me a new life. It was not the life I would have chosen, but it was my life just the same". All of use are living our new lives. We are supporting each other. You have lots of supporters cheering for your health and successful remission!

[loretta]

Originally Posted by Lwalls

3 weeks ago yesterday I had surgery on my foot to remove a neuroma that has plagued me for nearly 10 years.
I have horses ,and I could no longer tolerate riding very long, or even standing in a stall to groom. I couldn't walk with out a tremendous amount of pain. I could only wear one pair of shoes comfortably ( I'm sure you'll ask so I will tell you now...It was a pair of Sketcher Shape Ups, and I HIGHLY recomend them) So, I FINALLY opted to have the surgery.

The surgery is routine. I picked a very qualified doctor to perform it, after doing much research. I had it on a Friday and was supposed to be able to walk ( limited) right away. My plan was to go back to work the following MOnday, however that didn't happen.

Saturday morning I woke up with excruciating pain in the area where the nerve had been removed. It went on like this all weekend. I took my vicodin, but the thing was...my foot ONLY hurt if I tried to USE it. It never hurt at rest. Monday I called the doctor. He was afraid the bandage had become too tight. and advised me to remove the cohesive part of the bandage. I was to follow up with him on Wednesday. Wednesday came and there was no imporvement. The doctor is stumped. He says he has never had this happen in all the years he has been treating feet. He changes me to Darvocet. Again my foot only hurt when I attempted to walk on it. I did swell though, and had a fair amount of bruising, which of course we all contributed to being post operative and normal. The following week I was to see him again. This would be on a Monday. Still no significant improvement and the doctor is obviously worried at this stage. he leaves the office to do several telephone consults with other doctors, including an orthopedic surgeon. They all tell him to "wait and see". I am sure by this point, everyone who was NOT my doctor was assuming I was just being a baby. I, on the other hand, knew that I have an incredibly high pain tolerance. So what I was experiencing was NOT NORMAL! He changes me to Mobic, and says "lets give it till Monday and see what ahppens then." MOnday evening my foot is very swollen and red. I had developed POCKETS of fluid along the outside of my ankle. I iced it and went to bed.
The following day was more of the same. Tuesday eveing the pain was worse, and so was the swelling. I was sitting in the recliner and fairly suddenly realized that when I FELT like I was moving my toes...they were NOT responding! Then I realized that I could NOT flex my foot up. I tried like hell, but my foot wasn't moving and my ankle as turned to the side. I could not restore my foot to a normal position no matter how hard I worked at moving it! Of course I was freaking out, and imagining a life with out walking or Riding a horse again. Because I was in panic mode, and having a melt down, I waited until the following day to phone my Dotor.
We talked about a couple of different scenarios, and possible diagnoses. I told him about the inability to move my foot the night before ( which ironically I could move a little the foloowing day). He called me back in two hours. He had spoken to a nerologist wtih experience in trating CRPS. He made me an appointment for the following day.
The neurologist looked over my foot, and was 90% sure we were dealing with CRPS. He said he had never seen it in such an early stage, and had high hopes that I would have a complete remission because it was caught so quickly. He perscribed Prednisone ( 60mg for 3mo) and calcium replacement via nasal spray.
It has been just over a week and in the past 4 days I have been able to put weight on my foot! It still feels electrified at times, but I have tried to convince my brain that I can beat this! In the past 2 days I have been able to walk ( VERY SLOWLY and somewhat painfully) with out the crutches.

I am to begin Physical Therapy on Tuesday.

I have terrible terrible pain ( i'd give it a solid 8) in my calf. I am not sure if this is a symptom of the CRPS or if it is from the lack of use in the past several weeks. Nothing seems to relieve it, and it almost feels like a giant muscle cramp. I have tried massaging it, and tub soakes...to no avail. ON a positive not, my foot feels GREAT compared to where I was with it just a week ago.

I am 32 years old. I am hoping to have complete remission! Does this happen? I am so thankful to God thatthis was caught early. I can't imagine the torture that goes along with having this daily, and infinitely.

Thank you so much for your site, and I will try to keep you updated!

I also posted this in the new member area before I realized there was a seperate CRPS thread.

Hi LWalls, Welcome, and I too am glad you got early diagnosis. I also got CRPA following surgery-breast biopsy. Nueroma is a common one that you can get CRPS following. It was 4 years for me before getting diagnosed. But I did get physical therapy right away, as I got frozen shoulder. CPRS is also referred to RSD-Reflex Sympathetic Dystrophy. It was discovered during Civil War- Also has been called Shoulder-Hand Syndrome. Because I got into therapy immediately following surgery, I did go into remission. It did take 100 pt and I did 100 massage treatments before pt. I took Darvocet before pt. The therapist told me when I was recovered and getting ready to move to Arizona and it might move to the other shoulder. I thought that sounded strange. But my remission was over a year and then it did start up in my other shoulder. more pt and therapy. Another remission for over a year. While water skiing, I felt my original arm8-my hand pulled some nerves. Was diagnosed with RA. rheumatoid arthritis didn't make sense , so I went back to Oregon to Ortho hand specialist. Was diagnosed in 1 minute with RSD- the nuclear dept test verified RSD. I believe the massage therapy helped me tremendously. Also in pt they had me run my hand thru different textures, so I didn't get allodoynia (sensitivity to clothes touch etc. At home I had 5-6 plastic bowls filled with coffee grounds, sand, various pieces of fabric, beans, popcorn, helps de-sensitize nerves in hand.; The ortho hand dr. also ordered a Tens Unit, which helped me tremendously. I've had this 15 years and about 6 years ago diagnosed full body. Found a psychiatrist, that also was a neurologist, & pharmacologist. He just built two clinics with HBOT. I'm going to go thru HBOT. He told me they just added 16 HBOT units at the VA hospital in Florida. Because RSD affects circulation, HBOT gives us 100% oxygen at twice the pressurization and gets the oxygen to toes fingers etc.
A lady here in Phoenix recently was in an accident on the freeway. Two cars collided and one of them ran into a fence. The metal pole became a missle and went thru her windshield and pinned her shoulder to the back of the seat. She had 17 operations Her surgeon called my neuro and asked if he would treat her frozen shoulder with his HBOT. He did and the camera crew of local tv station took pictures of her waving to them after just 5 treatments. What state do you live?
There was a Dr. In Florida that studied RSD for 40 years. He is retired now, but still has website up. It is rsdrx.com Under puzzles list is 146 questions regarding rsd and his answers. It is really good. Also RSDSA is the national organization. They had their annual meeting last year here in Scottsdale. I attended. It also was here at the Mayo Clinic they did the Ketamine Studies for FDA. Dr. Harbut and Dr. Swchartzmen being part of it along with German and Australian Dr. In Germany they do a ketamine Coma
and in US they do ketamine infusions and they help some people in breaking the pain-brain signals .
You really have a good chance of longterm remission-pt is extremely important. My toes were saved with water therapy. Water needs to be 86 degrees. My toes curled up off the floor and in 4 months they were touching the floor again. I have one hand that is like a claw because of delay of therapy and wrong diagnosis. I now have internal RSD in pelvic region, entire spine and lower back burning up. It's a tough thing to have, so do everything in your power to get the best treatment now. There are some good docs and hospitals in the country. Hope the best for you. I grew up riding too-it's wonderful isn't it. I miss that, tennis, water skiing, snow skiing, hiking, etc. But trying to get more active and hope to travel again. One of your new friends, loretta

[hope4thebest]

Hi Lwalls,
Welcome to the boards..I'm sorry it is under the circumstances of the pain your are experiencing...

If it is a case of CRPS, it is great it has been diagnosed so quickly and your docs are jumping into immediate treatment. Hopefully, your medical team is very knowledgeable about RSD/CRPS and the various treatments available.

I had an ankle injury in 2006 and resultant surgery in 2008. Til this day, I'm not certain how long the RSD was brewing, but I know that quicker intervention would have made a world of difference in my treatment of it..

You might ask your neurologist who is experienced in RSD if s/he suggests any additional treatment such as blocks, or additional meds to break the pain cycle as soon as possible!
I would also be cautious with ice, as ice is not to be applied to a CRPS or potentional CRPS site.

You mentioned pockets of fluid outside your ankle; it could be that your limited mobility was due to the fluid and excessive swelling. When my ankle and foot are severly swollen my range of motion is greatly diminished..
I, too, had a neuroma removed from my left foot 11 years ago..I finally relinquished to that surgery, as it was always so painful to apply pressure to the ball of the foot.
It is ironic (?) that the CRPS which resulted from my ankle injury/surgery has re-ignited the pain in my old neuroma removal site..
I hope the prednisone continues to help with your pain and brings your closer to remission!!
Good luck with your early treatment and keep us posted!!
Hope4thebest

[LIT LOVE]

That seems REEEAAALLL fast for a diagnosis. I hope they were wrong, for your sake, but if it was caught this early that is the best case scenario.

Blocks are often used as part of the diagnosis process, you might want to inquire if there is any possibility you can attempt one, or a series, asap with the doc who diagnosed you.