I am new here!

[trishj46]

TO STEPHANIE P.

I tried to respond to your PM and was unable to figure it out ( stupidity) Thank you for your kind note. My family s involved very much but feel helpless too. My brother and sister have taken me to over 150 appointments in last 1-2 years. I guess I should just take meds with side effects rather then put up with this! How can I not sit???? I lay on bed on my side with ice. I cannot walk or stand much as it feels like something is going to fall out of my rectum. I have my spinal injury to contend with on top of this. I usually go to ER when I am like this, but they give me about six different shots of dilaudid over a period of time to calm it down. They do not know how to treat problem, so just send me back to my hell again.
On the pm they wanted your user name, all I have is Stephanie P. and was not accepted. All I ever had was prayer, but am losing that now! Blessings!!!
Pat

[Violet M]

Trish, I'm sorry you are going through so much. I understand to some extent -- I have awakened in the middle of the night with intense burning and I have gone through many nights where I barely slept. But now that I have received the proper treatment, I have a decent life. So don't give up hope. It's a matter of calmly fighting and advocating for yourself until you get the treatment that works for you. But first you need a proper diagnosis and you have to go to the right people to get that. There are many doctors who have never heard of PNE and some who don't believe in arachnoiditis. My friend who had transverse myelitis had to travel to another state to get diagnosed. I don't necessarily blame the docs for this. There is so much to know in medicine, it is impossible to know absolutely everything and some of these conditions are rare.

For rectal pain/discomfort, you could try a ganglion impar block and if that helps you can have a more permanent procedure using phenol or cryoablation of the ganglion impar. This is just one of the options to try.

Are there no physicians in Delware who do intrathecal pain pumps or if not Delaware, in a nearby state? I've known people who traveled lying down in the back of a car (including myself) to get where they needed to go. Maybe your family would be willing to help you in that way. One woman I know rented a vehicle that would fit a mattress in the back and traveled clear from the east coast to Arizona for treatment. I know it's not easy. I had to lie down on the airplane to get to France for surgery and it was a very difficulty trip. On the way back I was so drugged up I hardly remember the trip. So, no, it's not easy, I understand that; but it is worth trying.

Violet

[trishj46]

It has been days now and night with no relief. Thank you for your note Violet, but have tried and tried with doing research. I cannot stand the pain any longer. This whole weekend since last Thursday has been horrific. In bed and chair and pacing, with ice and vicodin, Percocet, 800mg of advil do not even touch me. I can't wait till April 1st for help------I'll be dead.
There is no sleep, no eating. Am going to try calling my primary tomorrow and ask for 10mg of amitriptoline (sorry about spelling) even though I could not take it before. He may not order.
my neuropathy in both feet excruciating and swollen. Pain going up both my legs. painful to sit here and write even with ice. Did you find when you had this that every part of your body felt in pain??????? I can't get away from it, not even for a moment. Its like a shadow that just follows me no matter where I go. Its 2:45am and I long for sleep. I do not live in Delaware.
I am in Collingdale, Delaware county, Pa. I am so jealous, but happy for you.!!!!!! Lots of love!!!!!
Pat

[Violet M]

Pat, I remember feeling like I was in a prison of pain but I didn't have swelling in my feet. I think with your spinal injury you have more going on than just PN. You could try contacting Dr. Echenberg in Bethlehem PA but he primarily treats pelvic pain, not spinal issues so I don't know if he would be able to help you but he might know someone who could. http://www.pudendalhope.info/node/58#PA

Violet

[trishj46]

With the way I am feeling, I am afraid of ending up on the spiritual forum, where the people are remembered for not being able to live with pudental neuralgia.

Remember me!!!!!!
Pat

[Violet M]

Pat, you haven't tried all of your options yet, girl. I am sorry you are feeling so rotten but please hang in there and at least give everything a try before you throw in the towel! There are docs who treat patient with spinal injuries. Try Stanton-Hicks in Cleveland, OH. I've heard he treats patients with chronic pain. http://my.clevelandclinic.org/staff_dir ... torID=1175

Violet

[trishj46]

I can travel about 5miles to get to my doctor laying on the back seat of the car!!!


Thanks for the info, but its time to give it up. I can learn to live with pain & suffering, been doing it a long time!


If I sound bitter or depressed, that's just the way it is!!!!! Cleveland might as well be a million miles way!

Pat

[Laramarie]

Dear Pat
We all feel your pain.... But there is hope!!!! I also have been in excruciating pain and wanted to end it all!!!! I traveled from Toronto Canada to Phoenix to get the help I needed!!!!! I took pain meds and fentanyl patches and did what I had to do to get relief. There is help out there, you have to be strong and get to the appointments that you have to get to. Don't give up..... I know it's hard. The pain is horrible, you can't sleep, you can't sit, you can't stand, you hate your life.. But it does get better! I have to take 6 to 7 hot baths a day to try to bring my pain levels down! Please stay positive and trust me, you will get better!

Prayers for you....

[Kathleen]

Dear Pat: I am so very sorry that you are having so much pain, and feel that you are at the end of your rope. I have been there as well. I went to Toronto Canada to Dr. Gordon and Dr. Peng and they disagreed on their diagnosis of me. Dr. Gordon said I had PNE with a bunch of other stuff with the q-tip test. Dr. Peng had told me he never had a patient with only one symptom (foreign object in rectum) and had PNE. So he gave me three blocks for different nerves. None of them worked, they irritated the nerves. He didn't want to do a PN block, and as I couldn't ever see myself having surgery I felt there was no point. That was last May.....since then things have dramatically changed for the worse. I had an opportunity to email Dr. Gordon to relate my experiences. I told him about my constant pain, how I am in bed now 99% of the time. I have pain lying in bed. My PN symptoms are much worse. Groin pain, buttock pain, sharp nerve pain. I am allergic to morphine so am unable to take any powerful pain medication. Dr. Gordon replies to my email and asked if he could send it on to Dr. Peng, and I said yes. That was over two weeks ago and I have never heard anything. For years whenever I am in the car for more then ten minutes I lie on a foam mattress in the back of the van. I can only sleep on my right side now at night because my badly affected side gets worse if I try to lie on it even for a short time. If I sit in my foam special chair I can sit for only 5 minutes. I have no options now, no plans for any help. My family doctor is very sympathic to my condition, but knows nothing about it. I have done pelvic floor therapy, trigger points, and skin rolling. I had to drive four hours away to get that treatment. At the time it helped, but now if I try to do any of those things my pain increases and now it doesn't improve at all from lying in bed. I'm 67 years old. I have had two back surgeries, my spinal fusion was in 2004 and it made the pain worse, that will be ten years in June. So I feel your pain, your despair, your desperation, and depression. I just don't want you to give up. As others say (and they know a lot about it) maybe there is something out there for you. I am a Christian and find my faith in Christ helps me, but even then every day is a struggle, and I see no improvement any time soon. This is a terrible condition to have.

Kathleen

[RichB]

Hello Pat, I am new here as well. Although I do not have the extensive symptoms that you speak of I definately can relate.

Rich