[Juliek72]

Tomorrow I will be seeing my ortho and as he has said there is nothing he can do my broken part of my foot is healed so that's why he sent me to a great pm dr. With this said he has the power to write the note to my work allowing me to stand up and do my job so I can return to 5 days a week

I am scared to death. My pm dr said its ok for me to stand but to not over do it. I stand in 2 hour intervals with a 30 minute break in between. It's not a hard job just standing and walking. As of now I hurt when standing or walking but I have to do what I need to do. I need money or I will be homeless. If I can't push through this then I will have to file for disability or find a sit down job for half of what I'm making. This really sucks. Sorry for the language

My symptoms right now are some nerve pain that comes and goes in my arm, face, leg and my foot My foot feel like a knife is in it. I did have 3 injections in my nerves in foot last Wednesday so maybe it's just sore.

I am going to pt 3 days a week with Aqua therapy and pt. I'm on a ton of meds

My questions today are?
If you have the nerve sensor in your back how long were you diagnosed before you had it put in? My pm said that if this last nerve block didn't work we would consider the sensor put in my back
Is it a major surgery? What is the down time and does it work? Will I still use meds?
Also has anyone ever had nerve pain come and go in other parts of your body that come for maybe 15 mins to an hour and it gets very hot and then goes away but comes back later?
Sorry I have so many questions but in so confused. Also I am probably repeating myself so I apologize.

My wonderful new family God bless


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[mama mac]

Julie,
A Spinal Cord Stimulator or (SCS) is seen as the next line of treatment by many PM docs following failed Sympathetic Nerve Blocks. It was recommended to me about 6 months in by 2 PM specialist. There will first be a trial where sensors are placed on the spinal cord and the controls will be external. If the trial is seen as successful, then they implant the generator into your hip or back and this is a more major surgery with considerable down time. The unit sends a signal, supposedly like a vibration that can interrupt the pain signals to the brain. I strongly suggest that you research this thoroughly before making a decision. There is a lot of research published on the SCS and this forum has a great thread with many personal accounts. My decision was that this is not the right thing for me at this time. Many PM docs are really pushing these and don't always tell you all the risks and complications. Please search for yourself to see if this is the best option for you. ~mac

[Littlepaw]

I agree about proceeding with caution on an SCS. Dr. Chopra comes out against them in his video partly because of the complication rate and party because he says they work for 2-3 years then the body finds a way around it. I don't know if there are longevity studies out there on CRPS and SCS. It might be worth trawling around on Google Scholar for that.

That said, they are coming out with new technology all the time. There was a recent post on the Medications and Treatments thread mentioning the Stimwave wireless SCS that is injected via needle. That is a lot less invasive. The website says patients can even have MRI with them. IF you are going to get an SCS, research the various options and don't settle.

On work, I have thought about this standing, walking about thing and I wonder...would the use of an electric scooter be an option? You could maybe use it part of the day. I used a GoGo Elite traveler which is very small and maneuverable. I had friend who had to walk a lot for work rent one after bunion surgery. She kept it at work.

On your surgeon, just because they think you're all healed doesn't make it true. Yes, maybe your bone is healed, however you are clearly not all better yet. My initial surgeon was convinced my surgery was a "success" until my revision by another surgeon proved otherwise. Get your other docs involved or get another opinion for your paperwork if you need. You don't want to backtrack your recovery by overdoing.

[PurpleFoot721]

Julie,

My opinion on the idea of a SCS is use it as a last resort. There are plenty of other options out there that may help get you to a point that you are able to function well enough without it. As mama mac said, a lot of doctors are trying to push it on patients that could possibly benefit from it without trying other options first. It is quick cash for them. My first PM suggested it when 600mg of gabapentin t.i.d., 50mg of amitriptyline and 10-325 hydrocodone taken as needed did not provide enough relief. I felt that he was giving up too early to try such an expensive and invasive procedure. I now have a new PM. who wants to try that as a last resort only. He even wants me to try other options that he does not do, such as ketamine infusion, before I go that route.

As for being heeled, Littlepaw is right. Clearly you are not better. My ortho is still working with me. My surgery was back at the beginning of January and he knows I am not better so he will not release me from his care until he, my PCP and my PM all agree that I no longer need his care. I am however dealing with a non union that does not show up on x-ray but does show up on ct scan. In all actuality, that makes me still his patient anyway but he wants to do everything he can to help get things calmed down. I would suggest to not return to work full time until you are ready.

It may be wise to file for disability. It takes a long time for everything to go through. Talk to you doctors about it and see their suggestions on this. I filed last October when I was starting to loose work over the pain that my arthritis was causing. My first denial came in March. My first appeal is still in the review stage. It has been over a year since I filed already and I have been told, it could be another year and a half before I could hear anything back again. I do live in an area where too many people file for all the wrong reasons so the process does take a long time here, but if you are thinking of filing, do it sooner rather than later.

Alaina

[-Spike-]

Originally Posted by Juliek72

Tomorrow I will be seeing my ortho and as he has said there is nothing he can do my broken part of my foot is healed so that's why he sent me to a great pm dr. With this said he has the power to write the note to my work allowing me to stand up and do my job so I can return to 5 days a week

I am scared to death. My pm dr said its ok for me to stand but to not over do it. I stand in 2 hour intervals with a 30 minute break in between. It's not a hard job just standing and walking. As of now I hurt when standing or walking but I have to do what I need to do. I need money or I will be homeless. If I can't push through this then I will have to file for disability or find a sit down job for half of what I'm making. This really sucks. Sorry for the language

My symptoms right now are some nerve pain that comes and goes in my arm, face, leg and my foot My foot feel like a knife is in it. I did have 3 injections in my nerves in foot last Wednesday so maybe it's just sore.

I am going to pt 3 days a week with Aqua therapy and pt. I'm on a ton of meds

My questions today are?
If you have the nerve sensor in your back how long were you diagnosed before you had it put in? My pm said that if this last nerve block didn't work we would consider the sensor put in my back
Is it a major surgery? What is the down time and does it work? Will I still use meds?
Also has anyone ever had nerve pain come and go in other parts of your body that come for maybe 15 mins to an hour and it gets very hot and then goes away but comes back later?
Sorry I have so many questions but in so confused. Also I am probably repeating myself so I apologize.

My wonderful new family God bless


Sent from my iPhone using Tapatalk

Hi Julie,

I had a Spinal Cord Stimulator Trial performed a few years ago. We decided to go that route after about a year of unsuccessful attempts at other treatments. One of my doctors said that once implanted, these offer successful relief in 85% of patients. Unfortunately for me, I was one of the 15%. The minute the switch was flipped on, I screamed, cried, sobbed, and wept bitterly for 17 straight hours. The pain was so intense and so unbelievably horrendous that I prayed to God that he would just end my life that day. I didn't know a person could experience that degree of physical suffering and live! The woman that I was with started crying, as she watched the degree of my suffering, knowing there was nothing she could do to help me, but pray. Yet, I would be one of the first to recommend giving it a try, if that is what you decide that you want. But I would also recommend giving the surgical trial a whole lot of thought and prayer before dipping your foot in for a try to see if it works for you.

What they do is: They surgically insert a line next to your spinal cord. This line would then connect to the stimulator which would buckle on your belt. It has different levels of intensity. Once it is turned on, you would adjust the setting to where the doctor tells you to start the intensity. And then over a course of what was for me a 2 week trial (though I didn't make it through even the first hour with mine), you slowly increase the intensity to where it would be, if they were to insert a permanent stimulator in your body.

Inserting the trial stimulator was about a 45 minute surgery. And I can't remember, but I think inserting the permanent one would take around a couple of hours, maybe a bit more than that.

___ And then you were asking about pain coming and going in different parts of your body. Yes, that does happen. In my opinion, hit those areas as hard as you can with physical therapy, and stay on top of it with those areas, so that the pain doesn't become permanent. And Desensitize the HE-double tooth picks out of that area. Use soft cloths, popsicle sticks, different textured cloths and objects on those areas. That will help to convince your CRPS that it needs to go play else where. What you do within the first 6 to 9 months in those areas will be crucial to helping ward off the disease spreading its symptoms to those areas In MY OPINION. I'm not a medical professional. I'm just sharing with you what has happened to me through out the course of my experience, as I've battled with this dreadful disease.

You are in my prayers about your job!! I am putting you on my prayer list. God's peace!

-Spike-

[Juliek72]

Originally Posted by -Spike-

Hi Julie,

I had a Spinal Cord Stimulator Trial performed a few years ago. We decided to go that route after about a year of unsuccessful attempts at other treatments. One of my doctors said that once implanted, these offer successful relief in 85% of patients. Unfortunately for me, I was one of the 15%. The minute the switch was flipped on, I screamed, cried, sobbed, and wept bitterly for 17 straight hours. The pain was so intense and so unbelievably horrendous that I prayed to God that he would just end my life that day. I didn't know a person could experience that degree of physical suffering and live! The woman that I was with started crying, as she watched the degree of my suffering, knowing there was nothing she could do to help me, but pray. Yet, I would be one of the first to recommend giving it a try, if that is what you decide that you want. But I would also recommend giving the surgical trial a whole lot of thought and prayer before dipping your foot in for a try to see if it works for you.

What they do is: They surgically insert a line next to your spinal cord. This line would then connect to the stimulator which would buckle on your belt. It has different levels of intensity. Once it is turned on, you would adjust the setting to where the doctor tells you to start the intensity. And then over a course of what was for me a 2 week trial (though I didn't make it through even the first hour with mine), you slowly increase the intensity to where it would be, if they were to insert a permanent stimulator in your body.

Inserting the trial stimulator was about a 45 minute surgery. And I can't remember, but I think inserting the permanent one would take around a couple of hours, maybe a bit more than that.

___ And then you were asking about pain coming and going in different parts of your body. Yes, that does happen. In my opinion, hit those areas as hard as you can with physical therapy, and stay on top of it with those areas, so that the pain doesn't become permanent. And Desensitize the HE-double tooth picks out of that area. Use soft cloths, popsicle sticks, different textured cloths and objects on those areas. That will help to convince your CRPS that it needs to go play else where. What you do within the first 6 to 9 months in those areas will be crucial to helping ward off the disease spreading its symptoms to those areas In MY OPINION. I'm not a medical professional. I'm just sharing with you what has happened to me through out the course of my experience, as I've battled with this dreadful disease.

You are in my prayers about your job!! I am putting you on my prayer list. God's peace!

-Spike-

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[Juliek72]

Thank you Spike for the prayers and in return I will put you on my prayer list also and I wish your pain would go away.
I have been working but sitting box at the dice table so not doing much but watching my dealers and customers. Well last night I stood up and did my floor position (casino supervisor). It's hard to explain when people don't know about casinos. Well I made it about 5 hours and I had a lot going on. Markers to do, a player cheating, table limit situation with a high roller. ( if you need me to explain any of this I will . Let's just say I was extremely busy. I've been doing this for 21 years and I handle pressure well. But not last night. With all of this going on everything went crazy in my head. I couldn't think things got blurry. I couldn't remember anything it was like i was in another world. So I broke down and began crying and I went to the bathroom. I am now scared I won't be able to handle my job. I was also in extreme pain. I'm so glad I'm off today and tomorrow. To rest. Sorry to rant to y'all but I had to get this off my chest. I'm also glad that today is church
Thank you and God bless all of y'all.


Sent from my iPhone using Tapatalk

[-Spike-]

Originally Posted by Juliek72

Thank you Spike for the prayers and in return I will put you on my prayer list also and I wish your pain would go away.
I have been working but sitting box at the dice table so not doing much but watching my dealers and customers. Well last night I stood up and did my floor position (casino supervisor). It's hard to explain when people don't know about casinos. Well I made it about 5 hours and I had a lot going on. Markers to do, a player cheating, table limit situation with a high roller. ( if you need me to explain any of this I will . Let's just say I was extremely busy. I've been doing this for 21 years and I handle pressure well. But not last night. With all of this going on everything went crazy in my head. I couldn't think things got blurry. I couldn't remember anything it was like i was in another world. So I broke down and began crying and I went to the bathroom. I am now scared I won't be able to handle my job. I was also in extreme pain. I'm so glad I'm off today and tomorrow. To rest. Sorry to rant to y'all but I had to get this off my chest. I'm also glad that today is church
Thank you and God bless all of y'all.


Sent from my iPhone using Tapatalk

Oh no, you have absolutely no need to apologize for anything at all. PERIOD! You are one very courageous woman. You are doing a fantastic job at work! Keep it up, you are doing great! Hey, I just came up with an idea. Is it possible for you to journal what is going on at work, writing down just what you wrote here in order to keep a record of it. If you did, you'd be able to give that to your doctor, if you should have to go on disability due to your disease. Documentation was so very important, when I had to resign from the ministry. It took a nightmare of a situation and eased me into my current situation. I am so thankful that I had the doctor that I had at the time, she documented every little thing that happened. That way when SSI and my insurance companies had to determine if I was eligible for benefits, her informative records really helped me.

I commend you on how tough you are and how dedicated you are to your company. You are one fantastic Christian lady!

I'm praying


-Spike-

[Juliek72]

Thanks again. Yes I do write down everything. I feel like my pm dr is great. He really has been very aggressive with my illness. He has started meds, and procedures very quickly. I read on here how most people don't get to where I am for treatments for months and years. He also takes time with me when I see him. I am very scared to even try to start for disability because from what I read you have to have crps for a year. But it doesn't help that I have a major depressive disorder and severe anxiety. I had to take meds last night to calm me down.
Thank you so much for all the words of encouragement




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[-Spike-]

Originally Posted by Juliek72

Thanks again. Yes I do write down everything. I feel like my pm dr is great. He really has been very aggressive with my illness. He has started meds, and procedures very quickly. I read on here how most people don't get to where I am for treatments for months and years. He also takes time with me when I see him. I am very scared to even try to start for disability because from what I read you have to have crps for a year. But it doesn't help that I have a major depressive disorder and severe anxiety. I had to take meds last night to calm me down.
Thank you so much for all the words of encouragement

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Really? That long, a year? Sheesh, that seems rather unfair, especially given how aggressive this disease is and how devastating it is on the Cognitive and Mood centers of the brain. That makes it tough to work. Errrrrrrr, so frustrating!