Hi Several years ago, I had the same situation. My doctor did the same back surgery. I complained about pain after the surgery but my arrogant doctor kept saying you need time to heal. My story is also long so I will just say that Doctor Arrogant handed me a piece of paper and told me to go see a pain doctor. I asked what the problem was and he told me that the pain doctor would explain. It was arachnoiditis. Went to a neurosurgeon and had a milogram which confirmed diagnose. Since then have been seeing a pain doctor. Had a neurostimulator put in and after many years it is doing absolutely nothing. Pain getting much worse and anxious that my pain doctor will not be increasing my pain meds. I take 1 5 mg oxycodone 2x/day and 1 5 mg methadone 2x/day. I think my pain doctor is hesitant to increase meds and I don't know what to do now. I understand what your going through.
Im so sorry. My story is the same as yours. Had the surgery. Then diagnosed with aracnoiditis. Been going to a pain management doctor for several years. Had a neurostimulator implanted. Stimulator has not worked for several years and planning to have it taken out. I pray for you. I have contacted several physicians but everyone tells me the same thing, you will have to live with it. Its frustrating. I find after several years the pain only gets worse. Due to the fact that doctors are hesitant to increase medication we don't have a bright outlook.
Im so sorry. My story is the same as yours. Had the surgery. Then diagnosed with aracnoiditis. Been going to a pain management doctor for several years. Had a neurostimulator implanted. Stimulator has not worked for several years and planning to have it taken out. I pray for you. I have contacted several physicians but everyone tells me the same thing, you will have to live with it. Its frustrating. I find after several years the pain only gets worse. Due to the fact that doctors are hesitant to increase medication we don't have a bright outlook.
I was diagnosed with arachnoiditis several years ago. As I have seen in many ofyour group discussions there is nothing other than pain management for my problem. I take 1 10 oxycodone and 1 Methadone 5 megs twice a day. They don't do much but I have no other choices. I must ask the group, do any of you sweat constantly during the day and night. It is so uncomfortable and I have to shower and wash my hair often during the day. I have seen different types of physicians and only one of them its because of my medication. Others have told me its menopause, Im 74. Does anyone have this problem. I would appreciate any advice. Thank you
Hello @pjf. I can see you are eager to connect with members regarding your arachnoiditis and see if anyone can relate to your story. For that reason, you will notice that I have moved your post back into the existing discussion on "arachnoiditis" that you have posted in previously. I did this to reconnect you with members who have already joined this discussion.
You mentioned having no other choices for treatment outside of pain management. I found an article that talks about some other ideas for treatment that you may or may not have considered, so wanted to share.
-Medical News Today: Arachnoiditis Treatment and Diagnosis: https://www.medicalnewstoday.com/articles/320811#treatment-and-diagnosis
As for the constant sweating, do you feel this is in some way connected to your Arachnoiditis? If not, I would invite you to consider sharing that aspect of your health story in our Women's Health group to see if members can help provide some support.
Thank you Amanda. Unfortunately I already have a neurostimulator, had acupuncture, exercise and a few other treatments. But thank you so much for any assistance you or the group can give me. Its so comforting that you are so quick to help.
Hello. I was diagnosed about 2 years ago. I had surgery for my back, everything was ok. Then...the pain came back worse than the surgery! Found a wonderful doctor on Hilton Head, SC. I've been trying to find someone that knows the pain i am experiencing. I know there is no cure. What I would like to chat with someone that has this rare disease. I hope that you will find relief. My doctor has me on Fentayl patch along with hydrocodone.
Hi Jellizabeth I had the same problem several years ago. I had the surgery and the pain was actually worse. After many tests I was diagnosed with arachnoiditis. I am now on oxycodone and methadone. I also have a stimulator. Neither medication or the stimulator do any good. The burning and pins and needles seem to be getting worse. I don't know what I will do either. Im so sorry you are going through all of this. I had nerve burning on my knee because after knee surgery I had swelling and pain and had nerve buring. I get this done every few months. It helps a little bit for a short time. I pray for you and hope you find someone to help you
Hello everyone!
I am Anma. I was diagnosed with arachnouditis and pelvic floor pain related to it at the Mayo Clinic many years ago.
My nightmare is walking mostly. It causes shooting pain in the pelvic floor, I now have sciatic pain in both sides and coccyx pain. My left leg feels short
I have a pain pump for trigeminal neuralgia but does not help the pain of the arachnoiditis
I would like to know if there is anyone with the sane ?
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Hi Several years ago, I had the same situation. My doctor did the same back surgery. I complained about pain after the surgery but my arrogant doctor kept saying you need time to heal. My story is also long so I will just say that Doctor Arrogant handed me a piece of paper and told me to go see a pain doctor. I asked what the problem was and he told me that the pain doctor would explain. It was arachnoiditis. Went to a neurosurgeon and had a milogram which confirmed diagnose. Since then have been seeing a pain doctor. Had a neurostimulator put in and after many years it is doing absolutely nothing. Pain getting much worse and anxious that my pain doctor will not be increasing my pain meds. I take 1 5 mg oxycodone 2x/day and 1 5 mg methadone 2x/day. I think my pain doctor is hesitant to increase meds and I don't know what to do now. I understand what your going through.
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1 ReactionIm so sorry. My story is the same as yours. Had the surgery. Then diagnosed with aracnoiditis. Been going to a pain management doctor for several years. Had a neurostimulator implanted. Stimulator has not worked for several years and planning to have it taken out. I pray for you. I have contacted several physicians but everyone tells me the same thing, you will have to live with it. Its frustrating. I find after several years the pain only gets worse. Due to the fact that doctors are hesitant to increase medication we don't have a bright outlook.
Thanks for your kind reply. Yes, the outlook is quite bleak. I'm considering umbilical cord stem cells at Bioxcellerator. Have to try something.
I was diagnosed with arachnoiditis several years ago. As I have seen in many ofyour group discussions there is nothing other than pain management for my problem. I take 1 10 oxycodone and 1 Methadone 5 megs twice a day. They don't do much but I have no other choices. I must ask the group, do any of you sweat constantly during the day and night. It is so uncomfortable and I have to shower and wash my hair often during the day. I have seen different types of physicians and only one of them its because of my medication. Others have told me its menopause, Im 74. Does anyone have this problem. I would appreciate any advice. Thank you
Hello @pjf. I can see you are eager to connect with members regarding your arachnoiditis and see if anyone can relate to your story. For that reason, you will notice that I have moved your post back into the existing discussion on "arachnoiditis" that you have posted in previously. I did this to reconnect you with members who have already joined this discussion.
You mentioned having no other choices for treatment outside of pain management. I found an article that talks about some other ideas for treatment that you may or may not have considered, so wanted to share.
-Medical News Today: Arachnoiditis Treatment and Diagnosis:
https://www.medicalnewstoday.com/articles/320811#treatment-and-diagnosis
As for the constant sweating, do you feel this is in some way connected to your Arachnoiditis? If not, I would invite you to consider sharing that aspect of your health story in our Women's Health group to see if members can help provide some support.
Women's Health Group: https://connect.mayoclinic.org/group/womens-health/
Have you tried any of the other Arachnoiditis treatment options mentioned in the article above?
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1 ReactionThank you so much. I appreciate any information on arachnoiditis. Have a wonderful day
Thank you Amanda. Unfortunately I already have a neurostimulator, had acupuncture, exercise and a few other treatments. But thank you so much for any assistance you or the group can give me. Its so comforting that you are so quick to help.
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Helpful -
Hug
1 ReactionHello. I was diagnosed about 2 years ago. I had surgery for my back, everything was ok. Then...the pain came back worse than the surgery! Found a wonderful doctor on Hilton Head, SC. I've been trying to find someone that knows the pain i am experiencing. I know there is no cure. What I would like to chat with someone that has this rare disease. I hope that you will find relief. My doctor has me on Fentayl patch along with hydrocodone.
Hi Jellizabeth I had the same problem several years ago. I had the surgery and the pain was actually worse. After many tests I was diagnosed with arachnoiditis. I am now on oxycodone and methadone. I also have a stimulator. Neither medication or the stimulator do any good. The burning and pins and needles seem to be getting worse. I don't know what I will do either. Im so sorry you are going through all of this. I had nerve burning on my knee because after knee surgery I had swelling and pain and had nerve buring. I get this done every few months. It helps a little bit for a short time. I pray for you and hope you find someone to help you
Hello everyone!
I am Anma. I was diagnosed with arachnouditis and pelvic floor pain related to it at the Mayo Clinic many years ago.
My nightmare is walking mostly. It causes shooting pain in the pelvic floor, I now have sciatic pain in both sides and coccyx pain. My left leg feels short
I have a pain pump for trigeminal neuralgia but does not help the pain of the arachnoiditis
I would like to know if there is anyone with the sane ?