B hy are you on strict bedrest Carl? Just because of the implant ? It is good for us to take some advice from Amanda .It sounds as though you have a wonderful Dr.
. The gabentin . I asked for some diazapan the other day and they refused it. Drats, it help settle down the pain . The gabapentine and Tylenol are not helping. Keep up the hope Carl, I will be going to need you.
Sacral Stimulator Implant for PN updated 3/6/15
Re: Sacral Stimulator Implant for PN updated 10/23
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
Re: Sacral Stimulator Implant for PN updated 10/23
Why are you on strict bedrest Carl? Just because of the implant ? It is good for us to take some advice from Amanda .It sounds as though you have a wonderful Dr.
. I I asked for some diazapan the other day and they refused it. Drats, it help settle down the pain . The gabapentine a Tylenol are not helping. Keep up the hope Carl, I will be needing your encouragment.
. I I asked for some diazapan the other day and they refused it. Drats, it help settle down the pain . The gabapentine a Tylenol are not helping. Keep up the hope Carl, I will be needing your encouragment.
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
Re: Sacral Stimulator Implant for PN updated 10/23
I have never been able to sit for any amount of time since about 2010. If I try, the pain escalates immediately, Even in bed lying down the pain can still get bad.
When Dr. Conway placed me out of work in October 2013, he wanted to see if not working and trying to do everything possible to allow the nerve to heal.
He hoped that in time this would be helpful. But now after 18 months post surgery and 12 months out of work I am in the same place I was before, but with better tools to control the pain.
I simply have not "recovered" from the surgeries. The damage to the PN was done, and now after officially one solid year out of work and strict bed rest there is essentially no change.
In short I am crippled permanently due to PN. The nerve was damaged by the SS ligament and has not responded to any therapy. I have never moved away from the post operative restrictions due to pain.
Our goal now is to:
1. Try to control and manage the pain.
2. Get the disability battle finished.
3. Move on from there.
I cannot say enough how much my wife and family have supported me.
The disability WAR is in full battle mode right now and Friday I was denied again. It is very upsetting to see the insurance company disregard medical information and fabricate lies. They destroy lives and don't care.
I am emotionally spent right now, I have made my assessment of the denial and sent it back to my lawyers.
I am sorry to go off topic right now... hopefully latter I can be more supportive once I have had some time to rebound.
Carl
When Dr. Conway placed me out of work in October 2013, he wanted to see if not working and trying to do everything possible to allow the nerve to heal.
He hoped that in time this would be helpful. But now after 18 months post surgery and 12 months out of work I am in the same place I was before, but with better tools to control the pain.
I simply have not "recovered" from the surgeries. The damage to the PN was done, and now after officially one solid year out of work and strict bed rest there is essentially no change.
In short I am crippled permanently due to PN. The nerve was damaged by the SS ligament and has not responded to any therapy. I have never moved away from the post operative restrictions due to pain.
Our goal now is to:
1. Try to control and manage the pain.
2. Get the disability battle finished.
3. Move on from there.
I cannot say enough how much my wife and family have supported me.
The disability WAR is in full battle mode right now and Friday I was denied again. It is very upsetting to see the insurance company disregard medical information and fabricate lies. They destroy lives and don't care.
I am emotionally spent right now, I have made my assessment of the denial and sent it back to my lawyers.
I am sorry to go off topic right now... hopefully latter I can be more supportive once I have had some time to rebound.
Carl
PN by sedentary job and commute
Treated for IlioInguinal pain 2008-10
PT by Dr. Conway's team | 3 PN blocks @ Elliott in Manchester USA
TIR 2010 and TG by Dr. Conway in May of 2012 uncovered nerve damage, declared surgical failure in May of 2014
PT and bed rest continues
Employer refused accommodations in 8/13, now in the disability war.
Sacrial Stimulator 9/14 by Dr. Ross Boston MA
Anesthetic pain pump trial 3/16/15 by Dr. Ross
Treated for IlioInguinal pain 2008-10
PT by Dr. Conway's team | 3 PN blocks @ Elliott in Manchester USA
TIR 2010 and TG by Dr. Conway in May of 2012 uncovered nerve damage, declared surgical failure in May of 2014
PT and bed rest continues
Employer refused accommodations in 8/13, now in the disability war.
Sacrial Stimulator 9/14 by Dr. Ross Boston MA
Anesthetic pain pump trial 3/16/15 by Dr. Ross
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stephanies
- Posts: 732
- Joined: Mon Oct 25, 2010 3:07 am
Re: Sacral Stimulator Implant for PN updated 10/23
Carl,
I am so sorry that you are now having to deal with this disability denial on top of everything else. I hope that you are able to win this war soon for you and your family.
Sincerely,
Stephanies
I am so sorry that you are now having to deal with this disability denial on top of everything else. I hope that you are able to win this war soon for you and your family.
Sincerely,
Stephanies
PN started 2004 from fall. Surgery in 2006 and 2007. Pain decreased by 85% in 2009, pain returned worse in 12/13. Pain reduced again in 2023.
Re: Sacral Stimulator Implant for PN updated 10/23
Hang in there Carl. Sounds like you are worse off then I am.
Ray
Ray
Re: Sacral Stimulator Implant for PN updated 10/23
Carl, we have had to climb mountains with this dreadful disease. I totally understand the hell you are going through. I know how hard it is to lie around, the pain is exasperating. .Now you are dealing with the darn insurance.
Today ! Our daughter wanted us to go out to dinner, I told her no. She said why is your pain worse today? Told her it is the same, I just pretend better other days. I also have pain on contact Carl. It is hell lying down in the back seat of the car and when we go out to eat, we find high tables. Standing can be just as bad because the nreves press against the pelvis.. I also have chronic gluteal pain, feels like sciatic, but emg says no. Horrible pain down my leg. Well enough of my whining. Just want you to know that you are very strong. This disease has made us tough. When we get our pain pumps, we will have a life again. I just hope that I will be able to skip the stim and go right to the pain pump. Hope is all we have Carl. Ellie.
Today ! Our daughter wanted us to go out to dinner, I told her no. She said why is your pain worse today? Told her it is the same, I just pretend better other days. I also have pain on contact Carl. It is hell lying down in the back seat of the car and when we go out to eat, we find high tables. Standing can be just as bad because the nreves press against the pelvis.. I also have chronic gluteal pain, feels like sciatic, but emg says no. Horrible pain down my leg. Well enough of my whining. Just want you to know that you are very strong. This disease has made us tough. When we get our pain pumps, we will have a life again. I just hope that I will be able to skip the stim and go right to the pain pump. Hope is all we have Carl. Ellie.
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
Re: Sacral Stimulator Implant for PN updated 10/23
Ray, we all have to deal with this affliction, no one is worse off than the other.How can we even begin to compare.
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
Re: Sacral Stimulator Implant for PN updated 10/23
I am so discouraged with the pain clinic. I saw Dr.Schultz Oct. 16th . They said they would call because they were not finished with the Dec. schedule. So it has been a month, when I call and leave messsges, I never get a return call. I have no idea when to expect this. It could be Jan.for all I kmow. I asked the nurse when I had my consult if Dr. Schultz if he had done many pudendal. . She said. Yes only a few. They gave me a steroid epideral for sciatic. I dont believe I have Sciatic. Emg says normalMy Dr.also sent reviews of the MRI saying pudendal shows normal. Crap. So Dr Schultz comes in snd says, you could or coult not have PN or Sciatic problems, I asked him if he knew of the decompression surgeries. Said, the surgeries should have helped. Damn, here I am again defending myself, I told himDr.Antalok diagnosed me.as did a Physiatrist after she checked me that she also has Pudendal nuerlgia..
My husband and I discussed getting a different Dr. I spoke with an anesthesiologist that I know well. She works for a paii. Clinic about half an hour from here, She suggested I see Dr Algore, because he has been there the longest and felt he is the best Dr there, He is in St.Cloud mn. . I called my GP today to refer me to him and set up a consult. So that will happen tomorrow. All I know for sure about both of them that they have done a few pudrndal. I am scared half to death. I do not know if I trust either one of them. My pain seems to start where the inscion from Dr. Antaloks . Pain down my leg , it is weakening my leg. I also have horrible rectal burning. I DO NOT SIT, SOMETIMES I JUST DEFY IT AND SIT ON MY CUSHION AND I ALWAYS PAY FOR IT. Karyn told me that there are all of the nerves nfrom the sacrum are involved. .You have no idea how I felt, when he comes in and says I may not have this condition because the surgeries should have helped. I dont trust him. How will he know where to put the leads, He did say later that he was not here to diagnose but to help the pain. He knew I wss angry.
I
My husband and I discussed getting a different Dr. I spoke with an anesthesiologist that I know well. She works for a paii. Clinic about half an hour from here, She suggested I see Dr Algore, because he has been there the longest and felt he is the best Dr there, He is in St.Cloud mn. . I called my GP today to refer me to him and set up a consult. So that will happen tomorrow. All I know for sure about both of them that they have done a few pudrndal. I am scared half to death. I do not know if I trust either one of them. My pain seems to start where the inscion from Dr. Antaloks . Pain down my leg , it is weakening my leg. I also have horrible rectal burning. I DO NOT SIT, SOMETIMES I JUST DEFY IT AND SIT ON MY CUSHION AND I ALWAYS PAY FOR IT. Karyn told me that there are all of the nerves nfrom the sacrum are involved. .You have no idea how I felt, when he comes in and says I may not have this condition because the surgeries should have helped. I dont trust him. How will he know where to put the leads, He did say later that he was not here to diagnose but to help the pain. He knew I wss angry.
I
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
Re: Sacral Stimulator Implant for PN updated 10/23
I was not able to finish. Please , if any one has suggestions I would welcome them.
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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stephanies
- Posts: 732
- Joined: Mon Oct 25, 2010 3:07 am
Re: Sacral Stimulator Implant for PN updated 10/23
River,
I understand your frustration. As PN patients, we hope that when we see someone new (a doctor, a physical therapist, a counselor, etc.) that that person will be able to help us see a light at the end of this long, dark tunnel and it is devastating when it ends in disappointment and frustration. It seems like your doctor is not that familiar with PN decompression surgery as there are, unfortunately, many patients who do not find adequate pain relief after the surgery. Maybe you can have this doctor get in contact with Dr. Anotlak? I do understand, however, that your doctor wants to verify where your pain is coming from prior to implanting a stimulator. Are there other ways he can do this, such as through a nerve block? As Blight and others have kindly shared in their experiences, this is not a procedure to be undertaken without careful consideration and it is not without risk. Is there another doctor who implants stimulators for PN who this doctor can possibly discuss your situation with so you can be sure your doctor is experienced enough for you to be comfortable? We are all different in our pain -- the duration, the severity, the challenges we each face are unique to each of us, yet we keep going, we keep trying. Please keep us posted.
Sincerely,
Stephanies
I understand your frustration. As PN patients, we hope that when we see someone new (a doctor, a physical therapist, a counselor, etc.) that that person will be able to help us see a light at the end of this long, dark tunnel and it is devastating when it ends in disappointment and frustration. It seems like your doctor is not that familiar with PN decompression surgery as there are, unfortunately, many patients who do not find adequate pain relief after the surgery. Maybe you can have this doctor get in contact with Dr. Anotlak? I do understand, however, that your doctor wants to verify where your pain is coming from prior to implanting a stimulator. Are there other ways he can do this, such as through a nerve block? As Blight and others have kindly shared in their experiences, this is not a procedure to be undertaken without careful consideration and it is not without risk. Is there another doctor who implants stimulators for PN who this doctor can possibly discuss your situation with so you can be sure your doctor is experienced enough for you to be comfortable? We are all different in our pain -- the duration, the severity, the challenges we each face are unique to each of us, yet we keep going, we keep trying. Please keep us posted.
Sincerely,
Stephanies
PN started 2004 from fall. Surgery in 2006 and 2007. Pain decreased by 85% in 2009, pain returned worse in 12/13. Pain reduced again in 2023.