I am new here!

[trishj46]

I am new here also. Have been in excruciating pain for three years now after spinal cord surgery. I have all the symptoms of pn but can get no help that works for me. I am a prisoner in my body and my home. I cannot take anymore and have considered suicide many times! Have been everywhere and done everything! Cannot sit at all any more or stand, walk or lay. I live with donut pillow and ice pack 24/7. Have no real pain medication as I tolerate hardly anything! I increased neurontin only to make myself sicker. All I would like right now is a pain medication to help and to get me somewhat back in life! I have a double whammy with spinal cord problems mixed with PN. Everything I read seems that no one seems to really get well! I think people are beginning to think I'm nuts! I have no quality of life
and I cannot tell you how many Doctors, pain management, medications, visits to ER I have been thru. I was always active, traveled, and a nurse for 24 years! I have no life left! All I hear about is the same medications all the time! There must be something to stop this burning & pain in anal-rectal and vaginal area! What is a roho pillow! or a miracle pillow? I use to be at least able to sit in lounge chair on donut pillow with ice, but not any more. I lay in bed on my side with ice but remain in agony. I am getting more & more depressed and it scares me!!! Thanks for listening! Would welcome any help you could suggest!! My name is Pat! trishj46!

[janetm2]

Welcome Pat,
If you would be willing to give us your location maybe we can give you resourses in your area. Unfortunately there are many doctors that have no idea how to help people with PN or PNE. Not being able to tolerate meds certainly complicates things and we have others like you who may have ideas. Have you seen a PN aware Physical therapist or PN doctor as listed off the home page? The FAQs on the homepage list other medicines that help with this condition but it is a trial process to find what would work for you and not make you sicker. I have a Roho cushion customed designed that has air pocket "fingers" that stick up and they have lower highest for the fingers in the middle with more at lower levels in the back center section so may center is free floating above and my sit bones are on the raised fingers. Kinda hard to describe but it works well for me and a PT through a seating clinic worked with the Roho medical suplly person to customize and write up paperwork for my doctor to sign and insurance paid 80%. As I said in another post I may noy be 100% but post surgery and with cushions I avoided the 24/7 pain level 10 I was heading towards and still have my job with help of leave without pay Family Medical Leave Act to work reduced days max of 7.5 hours. This should allow me to finish my last 2 years and retire. I can sit to eat out and use the Roho in a wheelchair for vacations, museums, malls (I also have chronic foot pain). I can cook and do laundry but had alrready given up cleaning the house due to the foot pain prior to PNE. Wishing you better days ahead and hoping you find someone to help you. Some similar symptom problems and related issue are hernia, labral hip tear, tarvlov cysts and Sacroilliac Joint dysfunction (SIJD). Janet

[trishj46]

Thank you JanetM for your kind response! Many of the PT or PN Doctors are not in my area. I am looking into the roho cushion! I also have additional problems.
neuropathy in both feet, either burning up or freezing cold 24/7 neurogenic bladder and bowel. must self-cath. I just have a mixture of many things. Dealing with the spinal cord just turned my life upside down, and now for three years this problem. Getting medication is the biggest problem. I feel if I had something to take the edge off and that I tolerated, along with this roho pillow if it works, I would at least be able to go back to my lounge chair and have a bit of peace, go back to my reading, my poetry, and my art. I know I will probably never get outside much!
I live in Delaware County, Pa. Collingdale. Thank you for your suggestions and kindness. I wish you well too! I pray, as its my only hope, and I will pray for you!!!!!

trishj46 Pat

[trishj46]

Thank you JanetM for your kind response! Many of the PT or PN Doctors are not in my area. I am looking into the roho cushion! I also have additional problems.
neuropathy in both feet, either burning up or freezing cold 24/7 neurogenic bladder and bowel. must self-cath. I just have a mixture of many things. Dealing with the spinal cord just turned my life upside down, and now for three years this problem. Getting medication is the biggest problem. I feel if I had something to take the edge off and that I tolerated, along with this roho pillow if it works, I would at least be able to go back to my lounge chair and have a bit of peace, go back to my reading, my poetry, and my art. I know I will probably never get outside much!
I live in Delaware County, Pa. Collingdale. Thank you for your suggestions and kindness. I wish you well too! I pray, as its my only hope, and I will pray for you!!!!!

trishj46 Pat

[janetm2]

Pat,
Thanks for the prayers, we can all use them. The added problems are certainly worse than mine. I originally thought the chronic foot pain was bad (LOL) but pales in comparison to the PNE and now residual PN! I am able to handle most meds and now use tramadol and oxycodone to keep the pains down or lower when they flare. Glad for the snowstorm to keep me off work while I adjust to another new medicine (Linzess for constipation to offset the pain meds) that we doubled today. The rollar coaster just continues on and I hope you can get to the lounging stage.
P.S. edited to add:
not sure how far you might be from Bethlehem,PA but a Dr Echenberg runs an Institute for Woman and has given help to some people with pelvic pain, etc. He night be worth a try and more info and resources. I think he even tries to find a good PT local to the patient.
Janet

[trishj46]

Janet,
Thanks for your response! I am in a very bad way today! Between spinal cord, fibromyalgia, and pn, I am in excruciating pain! My back feels like a piece of concrete! I am very depressed.
I hurt everywhere. I was told to cut back on Neurontin because of side effects and not helping anyway. I live alone but my family come over thru the week to do what I can't. I try very hard not to let them see some of what's going on with me, as they worry so much. But days like today I need to vent and I guess I am using the forum to do it, I am sorry! I have always been a spiritual person, but don't understand why it is not sustaining me now! I need to accept the fact that this is my life! Right now I don't know how to do that, and can't tolerate increased pain on a daily basis.
I see a psychologist every Tuesday who comes to my home. She is a great friend! I got her after surgery and found myself paralyzed from waist down, and knew I would need help to adjust to my life.
With vigorous PT in rehab, they got me out of w/c and onto walker. They had said I would never walk again ( fooled them!) But balance is very poor and I fall a lot on my butt which is what they think caused PN. I was always able to absorb myself in reading, writing, poetry and art, along with computer. Right now I feel unable to do these things and makes me more depressed!
I am sorry for dumping on you, but its a big help right now to talk. You sound like the roho cushion is a big help, and I did check it out. Don't understand exactly about getting it to personally fit you!
I would like to try one. Its great that you can work! But I'm sure its difficult! Right now my feet are so bad and swollen I can barely walk with pain! I am going to stop bending your ear, LOL.
Thank you for listening! You have a gift from God! I think & pray for everyone on this forum & their many problems! I would like it if anyone else who has similar problems would post! Let me know how others deal!? Thanks Janet! God Bless! Pat

[HerMajesty]

Can you give more details about the spinal problem? I had many of you same symptoms (PN, leg & feet) and they all did arise from spinal pathology - none directly from the pudendal nerve itself. Pathology at S2 will cause PN and leg symptoms simultaneously - as will pathology above S2 if it impedes conduction to the S2 level. For that reason you might want to pause before considering diagnostics or treatments directed toward the pudendal nerve itself, and focus more on the original problem with your spinal cord.

[janetm2]

We sre here for the venting and listening. It sounds like you have great strength to get out of the wheelchair, good for you. See Her Majesty's post for a direction based on ypur symptoms. The customizing for the Roho is to lower the center area so I won't have pressure there when sitting and my pain will not go up. My best other life saving accommodation was this Nook reader my hubby bought me. I can not only download and read books but also have access to email and internet on a small handheld device instead of getting on the big computer. I do not think I can do writing like creating a file like you may want but otherwise it is great, maybe a tablet or laptop might work but could be more costly. Also I have a table with a tilt top that can slide under the sofa with the top over to sit the nook on so I can lay down. I have less pain today and am taking off the two hours they did not give us off for the snowstorm. The end of the driveway still has the plowed ice block. Sorry your feet are giving you such grief! Try to get the faith back to help you and I am thinking about you and sending pleasant thoughts your way (never got the faith myself). Take Care,
Janet

[HerMajesty]

Also falling a lot on your butt can cause SIJD (sacroiliac joint dysfunction) - as you can see from my signature I got partial relief from correction of SIJD and further relief from dealing with the spinal pathology. Have you been diagnosed with arachnoiditis and / or had it ruled out? It is a possible complication of anything invasive done to the spine, from surgery to injections. It can be diagnosed via MRI, but many doctors don't like to tell you that you have it because a procedure they did caused it, and because it is not curable, only dealt with through pain management. If you don't know if you have arachnoiditis, pressure your doctor for a clear answer on that. If you have it, your route is pain management. If you do not have it, you have hope to be able to chase down your pathology and get it corrected. I did, and I am much better, some mild discomfort still but I am working and getting on with life. I am also a person of faith and do not give up on it, it ABSOLUTELY sustained me through the worst moments!
edit: re cushions - people with true pudendal pathology do tend to get relief from seating that takes pressure off the pudendal nerve, such as sitting on a toilet seat. Those of us with spinal pathology, not so much. Sitting on a toilet seat always made me worse because my pathology was in the sacrum and that is where most of the weight is distributed when sitting on a doughnut-shaped thing.

[trishj46]

I looked up arachnoidtis, it also can develop from what spinal surgery was for-------I had staph infection in spinal cord! They say anything bacterial can do it!
I just had my most recent cat scan in the hospital about two weeks ago-----they say it is stable!!!??? I just know this rectal-anal and vaginal burning and pain began back at the time of surgery and no one could diagnose over the course of three years what is causing my agony! I also have never been without back pain and other neurological pains since surgery. Neuropathy in feet is from surgery.
Benigh bladder & bowel is from surgery! I always said they may have saved my life but they entirely destroyed it at the same time. I guess I am more confused then ever. I do know I only
get some relief from donut cushion and ice pack. I pretty much have pain everywhere but do have fibromyalgia also! In these past three years I cannot tell you how many Doctors, and tests and
medications, and ER I have been too. All I get is there is nothing wrong and your pains are all from spinal surgery! or its all in my head and I should learn to live with it!
You wonder why I am depressed? and feeling hopeless? My biggest problem too is I CANNOT tolerate medications! Thank you both for your input and time! I appreciate it!! I just wish they had let me die on the table!!! I and my family would have peace!!!

Pat