kilg0retr0ut, not something to look forward to... Get to the best hospital you can--foot surgery is tricky business. Really hope this will keep you upright for a long time.
Post by acrobatinmydreams on Jun 23, 2015 18:33:27 GMT -8
jeff1967, My phatbraces did not work out. They would have been perfect, however, my Hanger orthotist decided to order a rigid bottom that could not be heated and adjusted. They were too tight in the footplate and she could not adjust the spots that would definitively cause a pressure area. The 15 minutes I walked with them though were great. I just can't take that risk with my loss of sensation. So I found another orthotist and they are ordering the same braces that I currently have from the same company. My new orthotist said the guy at Phatbraces was hard to work with and didn't want to make modifications to the Phatbraces. So I just stuck with what I know works.
I did want to tell you about my appointment with Dr Falci. The neurosurgeon that consults out of Craig SCI Hospital in Denver. My increase in pain is due to Adhesive Arachnoiditis or tethered cord. He said all spinal cord injuries eventually get a tethered cord. It is scar tissue that binds the nerves together and mine is adhered to the back of the spinal column. He was very knowledgeable and showed me the MRI frame by frame. Incompletes are much more prone to the searing pain that you have been talking about here. He has done over 1000 untethering surgeries on Spinal Cord Injuries. Mine was diagnosed on the MRI that I had. He did not recommend any of the implantables because he said they simply don't work on us. I asked him about his success rates via surgery and there is only a 50% chance that surgery can make the pain better. He usually does the surgery when a person starts losing function and then he can improve function. But there really isn't anything they can do for the pain part. He said they can cut the nerves completely but he would not do that in an incomplete injury and someone who has some function.
I have spent five years trying to figure out why my pain increased so much. I will have my fourth attempt at pain management tomorrow. The others have been humiliating and unproductive. So I will see what this one has to offer. Dr Falci said Narcotics was about the only thing since I have tried everything else.
If you have not had an MRI lately, you might need to get one. I had one in 2012 and it showed a syrynx but the radiologist did not mention the tethering or Adhesive Arachnoiditis. I don't think the scan I had in 2012 was enhanced so I think they missed it because my pain really hasn't changed. It has just gotten more intense.
Apparently there is a huge risk when the sac that surrounds the cord is punctured. They have seen an increase in this with the increase in epidural injections. I never would let them give me any invasive procedures on my back.
I really hate that the Phat Braces didn't work out for you but we have to do what is best for us. Hopefully your new braces will help you out and you find some relief.
Thank you for some very good information regarding your latest Dr visit. I had an MRI two weeks ago and have an appointment with pain management tomorrow afternoon to hopefully find out what is going on. I am not getting my hopes up but if they don't do better than they have the past few visits I am getting a referral to a SCI clinic in Jacksonville, FL. This recent MRI is my first in 18 years so I can only imagine the changes that have occurred. Great info on the implants. The more I have thought about this, the more I have been having second thoughts. The way United Healthcare has been in the past I can't see them agreeing to cover it even if I wanted to do it.
I was leery of having the epidural done in the past and glad I didn't do it. Actually the last pain mgmt. doctor said it would be a waste of time to have that procedure done on me which I was relieved. Now I have ammunition to keep my current pain mgmt. doctor from doing. From what I have read it does seem that narcotics are our only source of relief. It doesn't eliminate the pain but it makes it tolerable at times.
I am not familiar with sciatica but the past few days I have had a burning/shocking pain in my right leg that is nearly unbearable at times. I cannot stand anything to touch my right outer thigh. I was on a flight Monday and was lucky to sit next to a guy that hit that leg every time he moved which nearly sent me through the roof of the plane. This has worsened over the past 1-2 weeks. Have you experienced anything like this? Is this just more neuropathy or possibly issues with the sciatic nerve?
Thanks again for giving me the heads up. That is just another reason this forum is worth its weight in gold.
acrobatinmydreams,this scar tissue is so frustrating in the problems it causes, im sorry too that the braces did not work.
jeff1967,if this is sciatic pain, you should feel the pain from the buttock central area, the pain then radiates down the leg.
To me it sounds like neuropathic pain which presents itself in various ways.
If someone touches me directly on the skin of my lower legs it feels like my legs have 3 degree burns..Putting socks on is painful and leggings etc. I have recently started with awful pain in my toes that makes me shout out its so painful, it literally feels like someone is axing my toes!
I don't have much feeling in the butt cheeks so I'm not sure if the pain started there or not. Sometimes it is like an electrical shock going down the center of my leg. My entire right leg is so sensitive to touch now. It is as if it is one horrible bruise covering my entire leg. Of course pain management looks at me like a freaking unicorn when I describe this to them.
I am keeping my fingers crossed that I get some answers at tomorrow's appointment. I will keep you all posted.
I really hate that the Phat Braces didn't work out for you but we have to do what is best for us. Hopefully your new braces will help you out and you find some relief.
Thank you for some very good information regarding your latest Dr visit. I had an MRI two weeks ago and have an appointment with pain management tomorrow afternoon to hopefully find out what is going on. I am not getting my hopes up but if they don't do better than they have the past few visits I am getting a referral to a SCI clinic in Jacksonville, FL. This recent MRI is my first in 18 years so I can only imagine the changes that have occurred. Great info on the implants. The more I have thought about this, the more I have been having second thoughts. The way United Healthcare has been in the past I can't see them agreeing to cover it even if I wanted to do it.
I was leery of having the epidural done in the past and glad I didn't do it. Actually the last pain mgmt. doctor said it would be a waste of time to have that procedure done on me which I was relieved. Now I have ammunition to keep my current pain mgmt. doctor from doing. From what I have read it does seem that narcotics are our only source of relief. It doesn't eliminate the pain but it makes it tolerable at times.
I am not familiar with sciatica but the past few days I have had a burning/shocking pain in my right leg that is nearly unbearable at times. I cannot stand anything to touch my right outer thigh. I was on a flight Monday and was lucky to sit next to a guy that hit that leg every time he moved which nearly sent me through the roof of the plane. This has worsened over the past 1-2 weeks. Have you experienced anything like this? Is this just more neuropathy or possibly issues with the sciatic nerve?
Thanks again for giving me the heads up. That is just another reason this forum is worth its weight in gold.
I have never let them do any invasive procedures epidurals or otherwise. I looked up the statistics on the neurostimulators. There is a 75% success rate if they are implanted within the first two years of onset of Chronic pain. The success rate drops to 9% if you have had chronic pain 20 years then get one. I went to the pain management doctor today. The PA was pushing any kind of procedure from neurostimulator to hip injections to deadening the pelvic nerves. Once they open the spinal column up there is so much risk. Many people have adhesive arachnoiditis just from having epidurals and back surgeries. The risk statistics are 19.5% so 20% of all people who have them end up with some complication. That is awfully high. www.medscape.com/viewarticle/554863_3
Jeff it is probably not sciatica but Central Pain Syndrome or even arachnoiditis instead. My nerve roots are bound in scar tissue and attached to the back of the spinal column. Dr Falci said that everyone with a spinal cord injury developed a tethered cord at some point.
I was really surprised that this PA really had no knowledge of Arachnoiditis...he called me a failed back surgery. My back surgery didn't fail. They did the best they could because I had a burst fracture.
I don't know that I trust this guy. He makes money off of those procedures so he has alot of incentive to do them whether they work or not. I told him what Dr Falci said and that he had done over 1000 surgeries on tethered cords. The PA kept trying to discount Dr Falci. But the way I see it Dr Falci has no incentive to lie to me. He didn't recommend surgery, he just said that when it got to the point that I couldn't stand it then he would consider doing surgery. The PA kept twisting my words and I said several times "that is not what I said".
I feel like I have just returned from bargaining at a used car lot....it just feels dirty to not be able to trust people who are supposed to have your health and best interest at heart. I am a bit confused though. At one point the PA said I could just do Medication management and then he turned around and said he didn't have time to do medication management because he was so busy with procedures.
No matter though, I don't think I will have ANY procedure at all. Working in Medical Records and reading charts, I have seen too many horror stories of epidurals and injections into the spine go wrong. One doctor killed a 24 year old pregnant woman because he punctured her lung through her back while doing an epidural. There is just too much risk of infection, scar tissue and many other things. I did enough damage myself in my accident so I don't think I need any help in that department.
Oh and regarding my braces, the phatbraces were going to cost me an 1,800 copay with Medicare. My new braces (from the same company as the ones I currently wear) that they just ordered today is $242 copay with Medicare. There is no doubt Hanger was committing fraud by trying to charge over $13,000.
I feel so aggravated and I am just tired of fighting. I have been at this for four going on five months..... I have such trust issues with medical providers.
acrobatinmydreams,this scar tissue is so frustrating in the problems it causes, im sorry too that the braces did not work.
jeff1967,if this is sciatic pain, you should feel the pain from the buttock central area, the pain then radiates down the leg.
To me it sounds like neuropathic pain which presents itself in various ways.
If someone touches me directly on the skin of my lower legs it feels like my legs have 3 degree burns..Putting socks on is painful and leggings etc. I have recently started with awful pain in my toes that makes me shout out its so painful, it literally feels like someone is axing my toes!
Lara Google Central Pain syndrome. I am hyper-sensitive on parts of my legs to the point I can't even take a shower some days because I just can't stand it. Some nights I can lay in bed and the ceiling fan causes excruciating pain. Lαrα, Like Jeff, I lost my ability to focus. If narcotics will give me that back then I will take them. I am just tired of suffering.
acrobatinmydreams, Central Pain Syndrome is horrible. My doctors are not sure if that is my situation, or Small Fiber Neuropathy. CPS fits better, but I cannot tolerate opioids--for me, pain is better than nausea and even more distress in B&B function. I hope you find relief soon. Your situation with Hanger was infuriating to me when I fist read about it, and I am glad you are no longer dealing with them. Really want these new braces will work out for you. That co-pay sounds about the same as for my AFOs (http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-composite-afo/matrix-max-1), which I love because they do not impinge on muscle action in calf, and are very lightweight, durable, and comfortable. They allow for ankle flexion, which makes for a natural gait. Good orthotist is essential, as custom orthotic insoles go along with this brace.
I am hoping and praying that I get some answers today. Pain management seems to want to spend as little time with me as possible so this appt may be just to get a referral to someone that actually knows what they are doing. I have never been so frustrated in my life as I am right now with the health care system.
I am hoping and praying that I get some answers today. Pain management seems to want to spend as little time with me as possible so this appt may be just to get a referral to someone that actually knows what they are doing. I have never been so frustrated in my life as I am right now with the health care system.
Post by kilg0retr0ut on Jun 25, 2015 7:24:01 GMT -8
Those shocks sound real familiar Jeff. I had them for a long time. Lyrica is the only thing I've found that helps, knocks out 90% of them. My Phatbraces still rock, but walking on the outside edges of my feet has taken it's toll. I'm trying to make the summer and have started the process of having a tendon transfer surgery. Yippeee
Good luck Jeff, I hope they can stop those shocks, torture sucks.
I am hoping and praying that I get some answers today. Pain management seems to want to spend as little time with me as possible so this appt may be just to get a referral to someone that actually knows what they are doing. I have never been so frustrated in my life as I am right now with the health care system.
Me too@jeff1967, in 26 years, I have never been treated like this. One appointment after another and they wonder why there is so much Medicare fraud??? These doctors are maxing the payments out to get the most they can.
I have made 15 calls today and several to Craig hospital. They have over 200 doctors on their referral list and none of them will treat pain. I did call and found one in Golden Colorado and another in Denver. So I am going to try both....why not?
wavewolf, I have never ever had a doctor brave enough to say I have central pain but that is what it is.
Those shocks sound real familiar Jeff. I had them for a long time. Lyrica is the only thing I've found that helps, knocks out 90% of them. My Phatbraces still rock, but walking on the outside edges of my feet has taken it's toll. I'm trying to make the summer and have started the process of having a tendon transfer surgery. Yippeee
Good luck Jeff, I hope they can stop those shocks, torture sucks.
Good luck. Lyrica never worked for me except made me loopy and I don't need help with that lol