Arachnoiditis: Trying to find a specialist

Posted by msaliceinpain @msaliceinpain, May 22, 2016

I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.

@christinasuit

@jelizabeth I am so sorry to hear your story and hear about your continued pain! I just continue to see my general practitioner. With the opioid crack down he is so limited now though and my pain seems to be getting worse (it seems) Every day.
Now on top of it I have been diagnosed with shingles. I never got the rash. The dr said we caught it early enough so I have been on the antibiotics but the pain is still there. I pray I don’t get the postherpetic neuralgia where the shingles nerve pain never goes away but with my luck…
Currently I am also having Major swelling in my joints which is Very painful. I had bloodwork done yesterday so I had them add esr and crp levels to see the inflammation going on. I have been bedridden for 8 weeks now. I try to do light stretches/movement but then I get muscle spasms. I am just so totally over it!!

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I am so very sorry to hear about your problems. I have been declining, as well, for the past five years. My problems did not begin with arachnoiditis, though. I had a cervical spine surgery that resulted in spinal sensitization, in 2003. That was nothing, however, to compare with the pain, weakness, and lower extremity atrophy that I have faced after a surgeon put a screw in my sacral nerve roots leading to cauda equina syndrome and arachnoiditis. Each day is a struggle for me and my spouse, as it is for you and your spouse. My heart aches for you, and I am in disbelief of how the evil doctor refused to change the radiology report after the other two doctors sent a letter stating that they saw arachnoiditis. If anyone deserves disability it is someone with arachnoiditis. I wish I lived near you. I would come and we could come up with a plan to make the radiologist's life a living hell like ours.

Liked by teetee7

REPLY
@jelizabeth

I am so very sorry to hear about your problems. I have been declining, as well, for the past five years. My problems did not begin with arachnoiditis, though. I had a cervical spine surgery that resulted in spinal sensitization, in 2003. That was nothing, however, to compare with the pain, weakness, and lower extremity atrophy that I have faced after a surgeon put a screw in my sacral nerve roots leading to cauda equina syndrome and arachnoiditis. Each day is a struggle for me and my spouse, as it is for you and your spouse. My heart aches for you, and I am in disbelief of how the evil doctor refused to change the radiology report after the other two doctors sent a letter stating that they saw arachnoiditis. If anyone deserves disability it is someone with arachnoiditis. I wish I lived near you. I would come and we could come up with a plan to make the radiologist's life a living hell like ours.

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What people like us have been through no one should have to go endure. My medication was once changed by a pain clinic from oxycodone to fentanyl patches. They gave me a saliva test the next month, instead of a urine test. I could see that something was going on, because the lady that gave the test acted abnormally happy. I had already seen enough out of this place that I knew this wasn't a good sign, but I always used the patches correctly and never took anything I wasn't supposed too. They waited almost a month to call and say the test showed no fentanyl. I think the entire situation happened because I had received a ganglion impar injection and it caused worse pain. I don't know if they thought I was trying to attempt legal action, which was ridiculous, but they had already made it clear that they did not like me coming there because I had so many problems, however, my diagnosis from this doctor was chronic back pain, if you can believe. I suppose after the injection they decided they would find a way to get rid of me. I was barely able to get around and when I first went there the surgeon would not operate on me for moderate to severe stenosis, because of my "previous surgeries". He sent me to the interventional pain mgmt. doctor at the facility, who ordered a CT myelogram that showed nerve root clumping. The radiologist didn't call it CES or AA and no one else had told me I had these conditions, so I didn't know what the myelogram meant. I didn't find out either, until last year, when I read it in my records from a neurosurgeon. Seven years is a long time to cave CES and AA and doctors all keep it hidden from you. After the drug test, three pharmacists said urine tests showed fentanyl much better than saliva tests, but that was all they would say. Fortunately my PCP referred me to another place. I didn't care for the new pain doctor because he was trying to put in a spinal cord stimulator. I didn't think this would help because my first pain doctor, that I trusted before he retired, said I had clumped nerve roots and I should get a pain pump. I went to another place six months later and I eventually told this doctor about the saliva test, because he is the only doctor that ever increased my medication in an effort to help me, and he treats patients more fairly than anywhere else I have been. He asked what strength the patch was. I told him it was a 50 mcg patch and he said he didn't think a saliva test would detect this small dose of a patch. I was glad to get that off my chest because it hurt me so deeply that the other place had done this to me when I have never abused my medications, and for them to try to make it look like I wasn't using, or maybe selling, the patches was very sh****!! Now that I am so much worse I am over it all too. I love my family very much, and they are the only reason I have been able to make it this long, but I wish so much that my life on earth would be over so that I would not have to live with terrible pain and suffering that will only get worse. I fear that I have a lot more suffering to endure, unfortunately, as I am not yet 60.

Liked by teetee7, kathrynd1

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@jelizabeth

What people like us have been through no one should have to go endure. My medication was once changed by a pain clinic from oxycodone to fentanyl patches. They gave me a saliva test the next month, instead of a urine test. I could see that something was going on, because the lady that gave the test acted abnormally happy. I had already seen enough out of this place that I knew this wasn't a good sign, but I always used the patches correctly and never took anything I wasn't supposed too. They waited almost a month to call and say the test showed no fentanyl. I think the entire situation happened because I had received a ganglion impar injection and it caused worse pain. I don't know if they thought I was trying to attempt legal action, which was ridiculous, but they had already made it clear that they did not like me coming there because I had so many problems, however, my diagnosis from this doctor was chronic back pain, if you can believe. I suppose after the injection they decided they would find a way to get rid of me. I was barely able to get around and when I first went there the surgeon would not operate on me for moderate to severe stenosis, because of my "previous surgeries". He sent me to the interventional pain mgmt. doctor at the facility, who ordered a CT myelogram that showed nerve root clumping. The radiologist didn't call it CES or AA and no one else had told me I had these conditions, so I didn't know what the myelogram meant. I didn't find out either, until last year, when I read it in my records from a neurosurgeon. Seven years is a long time to cave CES and AA and doctors all keep it hidden from you. After the drug test, three pharmacists said urine tests showed fentanyl much better than saliva tests, but that was all they would say. Fortunately my PCP referred me to another place. I didn't care for the new pain doctor because he was trying to put in a spinal cord stimulator. I didn't think this would help because my first pain doctor, that I trusted before he retired, said I had clumped nerve roots and I should get a pain pump. I went to another place six months later and I eventually told this doctor about the saliva test, because he is the only doctor that ever increased my medication in an effort to help me, and he treats patients more fairly than anywhere else I have been. He asked what strength the patch was. I told him it was a 50 mcg patch and he said he didn't think a saliva test would detect this small dose of a patch. I was glad to get that off my chest because it hurt me so deeply that the other place had done this to me when I have never abused my medications, and for them to try to make it look like I wasn't using, or maybe selling, the patches was very sh****!! Now that I am so much worse I am over it all too. I love my family very much, and they are the only reason I have been able to make it this long, but I wish so much that my life on earth would be over so that I would not have to live with terrible pain and suffering that will only get worse. I fear that I have a lot more suffering to endure, unfortunately, as I am not yet 60.

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@jelizabeth Hello! I am so sorry you are going through all that you are. I don’t know what else to say other than I am praying for you……..Karen

Liked by teetee7

REPLY
@jelizabeth

What people like us have been through no one should have to go endure. My medication was once changed by a pain clinic from oxycodone to fentanyl patches. They gave me a saliva test the next month, instead of a urine test. I could see that something was going on, because the lady that gave the test acted abnormally happy. I had already seen enough out of this place that I knew this wasn't a good sign, but I always used the patches correctly and never took anything I wasn't supposed too. They waited almost a month to call and say the test showed no fentanyl. I think the entire situation happened because I had received a ganglion impar injection and it caused worse pain. I don't know if they thought I was trying to attempt legal action, which was ridiculous, but they had already made it clear that they did not like me coming there because I had so many problems, however, my diagnosis from this doctor was chronic back pain, if you can believe. I suppose after the injection they decided they would find a way to get rid of me. I was barely able to get around and when I first went there the surgeon would not operate on me for moderate to severe stenosis, because of my "previous surgeries". He sent me to the interventional pain mgmt. doctor at the facility, who ordered a CT myelogram that showed nerve root clumping. The radiologist didn't call it CES or AA and no one else had told me I had these conditions, so I didn't know what the myelogram meant. I didn't find out either, until last year, when I read it in my records from a neurosurgeon. Seven years is a long time to cave CES and AA and doctors all keep it hidden from you. After the drug test, three pharmacists said urine tests showed fentanyl much better than saliva tests, but that was all they would say. Fortunately my PCP referred me to another place. I didn't care for the new pain doctor because he was trying to put in a spinal cord stimulator. I didn't think this would help because my first pain doctor, that I trusted before he retired, said I had clumped nerve roots and I should get a pain pump. I went to another place six months later and I eventually told this doctor about the saliva test, because he is the only doctor that ever increased my medication in an effort to help me, and he treats patients more fairly than anywhere else I have been. He asked what strength the patch was. I told him it was a 50 mcg patch and he said he didn't think a saliva test would detect this small dose of a patch. I was glad to get that off my chest because it hurt me so deeply that the other place had done this to me when I have never abused my medications, and for them to try to make it look like I wasn't using, or maybe selling, the patches was very sh****!! Now that I am so much worse I am over it all too. I love my family very much, and they are the only reason I have been able to make it this long, but I wish so much that my life on earth would be over so that I would not have to live with terrible pain and suffering that will only get worse. I fear that I have a lot more suffering to endure, unfortunately, as I am not yet 60.

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@jelizabeth I totally feel for you and I absolutely know what you're going through. Everything you mentioned has happened to me including the pain doctor fudging the drug test, doctors not listening to your needs and ignoring the problem, living only for your family while wishing it would all be over, etc.

I also had the fentanyl patches. I had them for a total of 15 years. My doctor did a urine test and then called me the next day and told me that the fentanyl didn't show up on the test so I must either be selling them or giving them away. Why would I pay almost $300 per month for them and then give them away? I'm no drug dealer either I also never misused any of my medications and he knew it. I called the lab that processed it and they told me that the doctor would have had to ask for a special test to detect the fentanyl. He did a simple 12 panel test. I never got to talk to the doctor again but I did talk to his nurse and I could tell that she knew what he did & she felt bad. I think he did it because they drained me of all the money I had and was no longer doing injections/procedures. I was just coming in to get my medications refilled. Acually, I think the big opioid scare played a part as well because this happened with me on August 17th, 2015 and I believe the warning about the opioids came out on August 15th. Pretty sad that they just screw people over like that and get a way with it. From that point on I carried a copy of my test results and gave it to each doctor I've seen since then to prove my case.

As far as the pain goes, trust me, I understand. I lay here every day wishing it would hurry up and kill me already. I don't want to die, I really would rather get better and live whatever life I have with my family. It gets so hard to be positive when you're in so much pain. All I can tell you is you're not alone and hang in there!!! Take care!

Liked by teetee7

REPLY
@qball2019

@jelizabeth I totally feel for you and I absolutely know what you're going through. Everything you mentioned has happened to me including the pain doctor fudging the drug test, doctors not listening to your needs and ignoring the problem, living only for your family while wishing it would all be over, etc.

I also had the fentanyl patches. I had them for a total of 15 years. My doctor did a urine test and then called me the next day and told me that the fentanyl didn't show up on the test so I must either be selling them or giving them away. Why would I pay almost $300 per month for them and then give them away? I'm no drug dealer either I also never misused any of my medications and he knew it. I called the lab that processed it and they told me that the doctor would have had to ask for a special test to detect the fentanyl. He did a simple 12 panel test. I never got to talk to the doctor again but I did talk to his nurse and I could tell that she knew what he did & she felt bad. I think he did it because they drained me of all the money I had and was no longer doing injections/procedures. I was just coming in to get my medications refilled. Acually, I think the big opioid scare played a part as well because this happened with me on August 17th, 2015 and I believe the warning about the opioids came out on August 15th. Pretty sad that they just screw people over like that and get a way with it. From that point on I carried a copy of my test results and gave it to each doctor I've seen since then to prove my case.

As far as the pain goes, trust me, I understand. I lay here every day wishing it would hurry up and kill me already. I don't want to die, I really would rather get better and live whatever life I have with my family. It gets so hard to be positive when you're in so much pain. All I can tell you is you're not alone and hang in there!!! Take care!

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Thanks for sharing!

Liked by teetee7

REPLY
@jelizabeth

What people like us have been through no one should have to go endure. My medication was once changed by a pain clinic from oxycodone to fentanyl patches. They gave me a saliva test the next month, instead of a urine test. I could see that something was going on, because the lady that gave the test acted abnormally happy. I had already seen enough out of this place that I knew this wasn't a good sign, but I always used the patches correctly and never took anything I wasn't supposed too. They waited almost a month to call and say the test showed no fentanyl. I think the entire situation happened because I had received a ganglion impar injection and it caused worse pain. I don't know if they thought I was trying to attempt legal action, which was ridiculous, but they had already made it clear that they did not like me coming there because I had so many problems, however, my diagnosis from this doctor was chronic back pain, if you can believe. I suppose after the injection they decided they would find a way to get rid of me. I was barely able to get around and when I first went there the surgeon would not operate on me for moderate to severe stenosis, because of my "previous surgeries". He sent me to the interventional pain mgmt. doctor at the facility, who ordered a CT myelogram that showed nerve root clumping. The radiologist didn't call it CES or AA and no one else had told me I had these conditions, so I didn't know what the myelogram meant. I didn't find out either, until last year, when I read it in my records from a neurosurgeon. Seven years is a long time to cave CES and AA and doctors all keep it hidden from you. After the drug test, three pharmacists said urine tests showed fentanyl much better than saliva tests, but that was all they would say. Fortunately my PCP referred me to another place. I didn't care for the new pain doctor because he was trying to put in a spinal cord stimulator. I didn't think this would help because my first pain doctor, that I trusted before he retired, said I had clumped nerve roots and I should get a pain pump. I went to another place six months later and I eventually told this doctor about the saliva test, because he is the only doctor that ever increased my medication in an effort to help me, and he treats patients more fairly than anywhere else I have been. He asked what strength the patch was. I told him it was a 50 mcg patch and he said he didn't think a saliva test would detect this small dose of a patch. I was glad to get that off my chest because it hurt me so deeply that the other place had done this to me when I have never abused my medications, and for them to try to make it look like I wasn't using, or maybe selling, the patches was very sh****!! Now that I am so much worse I am over it all too. I love my family very much, and they are the only reason I have been able to make it this long, but I wish so much that my life on earth would be over so that I would not have to live with terrible pain and suffering that will only get worse. I fear that I have a lot more suffering to endure, unfortunately, as I am not yet 60.

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@peggyella I also have Arachnoiditis with debilatating pain,I feel for everyone withth this condition. I just now joined this group and don't know where to go to post my own very long story. I would like to find a support group. From what I have read elsewhere doctors don't know, understand this condition, or know when a patient has this. It seems to me more awareness needs to be brought out to doctors and the goverment.

Liked by teetee7

REPLY
@bfsecurityguy

I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can’t find anyone who wants to help me..I’m so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.

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The Director of the FDA comments

9208A60F-D1CA-4D32-81F2-A08D00B3C21B

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@caklady

The Director of the FDA comments

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I have severe chronic pain in my knees and lower back. My Dr has weened me off all my opiod pain meds and started mega doses of gabapentin. Which has done nothing for my pain. Does anybody live in the Seattle area with a good pain Dr?

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@cherilynn

I have severe chronic pain in my knees and lower back. My Dr has weened me off all my opiod pain meds and started mega doses of gabapentin. Which has done nothing for my pain. Does anybody live in the Seattle area with a good pain Dr?

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Has your doctor determined the cause of the pain? Is this a case of "bone on bone" or "muscle" related? I had pain both in my knees, hips, and lower back. All three areas of pain turned out to be a result over tight muscles which placed more than normal pressure on these joints and therefore cause the nerve pain. A Physical Therapist resolved all of these issues with simple stretching exercises which loosened the muscular force on these joints. Note that the hip and knee pain was more at the annoying level of pain and something I could live with. However, the lower back pain was so bad I couldn't move at times. It was excruciating. Meds did nothing for this condition.

If you have bone on bone conditions that is another story. I've heard of artificial material being implanted to replace the worn out meniscus. However, I don't hear much about this so I'm not sure of the success rate. A relative of mine just went through the libation of the nerves in her knees and it appears to be working so far. But time will tell. A point to consider though is that a neurologist once told me that libation of a nerve can sometimes end up with more pain so research this before you engage in such a procedure. Good luck.

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@kathrynd1

@peggyella I also have Arachnoiditis with debilatating pain,I feel for everyone withth this condition. I just now joined this group and don't know where to go to post my own very long story. I would like to find a support group. From what I have read elsewhere doctors don't know, understand this condition, or know when a patient has this. It seems to me more awareness needs to be brought out to doctors and the goverment.

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Hi, @kathrynd1 – welcome to Mayo Clinic Connect. Sounds like you have a story to share with your journey with arachnoiditis with debilatating pain.

Please click View & Reply in your email notification so you can see the conversation in its entirety on the Connect site.

This would be a great place to explain some of your story, and I'm sure others in this conversation would benefit from hearing it. If it's very long, perhaps in brief to begin?

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@lisalucier

Hi, @kathrynd1 – welcome to Mayo Clinic Connect. Sounds like you have a story to share with your journey with arachnoiditis with debilatating pain.

Please click View & Reply in your email notification so you can see the conversation in its entirety on the Connect site.

This would be a great place to explain some of your story, and I'm sure others in this conversation would benefit from hearing it. If it's very long, perhaps in brief to begin?

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Hello to everyone! It sounds like we all have been on a journey to get here, I only wish it had been a fun journey. For those of us who have been diagnosed with arachnoiditis, it has been quite an experience. I knew there was something wrong with me but some doctors said there wasn't anything wrong with me and I walked right out of their office. I was not going to give up.

My husband and I relocated to Charlotte, NC from Boston in 2004 and the pain followed me down here! I have had a dozen back surgeries, way too many epidural cortisone shots, a spinal cord stimulator and a pain pump implanted and nothing helped, I kept on getting worse and worse. The last year has been crazy, I was hospitilized in October and the team of doctors on my case told me I had arachnoiditis. Just the sound of this word kind of sounds evil.

I spend most days on the couch with ice packs under my legs. When I do go out it seems that I pay for it later. Does anyone know of any good doctors in the Charlotte area?

Well that is enough for now, would love to hear from people in the same boat!
kathrynd1

Liked by Lisa Lucier

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@bfsecurityguy

I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can’t find anyone who wants to help me..I’m so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.

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@bfsecurityguy I would recommend you search your area for integrative pain specialists. Mine prescribes oxytocin troches & ketamine troches for me. They work together for all kinds of pain. I have to say, they do work better than any of the other medications I've had over the years and they are also affordable. Also, a good physical therapist will be able to provide a variety of treatments. Have you ever had laser therapy? Have you seen a neurologist for this?

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@bfsecurityguy

I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can’t find anyone who wants to help me..I’m so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.

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Hi, Nice to meet you. There are doctors out there. May I suggest checking out these support groups on facebook. Arachnoiditis, arachnoiditis everyday and arachnoiditis together we fight. They have been quite helpful to me. Sorry we had to meet by having this in common

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@jelizabeth

I am so very sorry to hear about your problems. I have been declining, as well, for the past five years. My problems did not begin with arachnoiditis, though. I had a cervical spine surgery that resulted in spinal sensitization, in 2003. That was nothing, however, to compare with the pain, weakness, and lower extremity atrophy that I have faced after a surgeon put a screw in my sacral nerve roots leading to cauda equina syndrome and arachnoiditis. Each day is a struggle for me and my spouse, as it is for you and your spouse. My heart aches for you, and I am in disbelief of how the evil doctor refused to change the radiology report after the other two doctors sent a letter stating that they saw arachnoiditis. If anyone deserves disability it is someone with arachnoiditis. I wish I lived near you. I would come and we could come up with a plan to make the radiologist's life a living hell like ours.

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@ @christinasuit My paperwork ALL said arachnoiditis and the disability judge said he didn't believe that is what my problem was. Dr ForestTennant will help read MRI so you can show the findings to your GP which should helpifyou do have arach

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@bfsecurityguy

I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can’t find anyone who wants to help me..I’m so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.

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I have been suffering from this problem for about 8 years now. My disability lawyer was fantastic. The judge we had was so understanding. But, to treat this condition is to say the least, hairpulling mad. But, I found an awesome pain management doctor that is god sent. I went through several before finding him. I wish you luck in finding relief and if you need to vent…please feel free to contact me via this website.

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