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.

@JustinMcClanahan

Hello @titan26. By posting to this discussion, you have joined your support group. Mayo Clinic Connect is an online community where members share their experiences, frustrations, successes, and even failures along their health journey. Here is another discussion focusing specifically on arachnoiditis you may find worth your time to read through and participate in where you feel comfortable, https://connect.mayoclinic.org/discussion/arachnoiditis/.

@titan26, how are you doing with your diagnosis? Are you experiencing any symptoms or undergoing any treatments?

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It has been an emotional roller coaster that I would love to get off anytime soon. Symptoms include dizziness headache constant throb and pressure in head vision problems speech problems memory tingling in hands
There is no support for mentally what this all does that is frustrating and that it keeps being blamed as depression

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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've have AA n have been to the pain clinic. My legs go into uncontrollable muscle spasms. Pain clinic would like to put a HF10 spinal stimulation device in me. Has anyone had success with this? There is only "hope" that it will control spasms. I've had several gun shot wound (vietnam) and 7 back n neck surgeries, so why should I allow them to cut me again which they say caused the AA to begin with? Any suggestions beside pain pills?

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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 too have many of the same debilitating side effects that were brought on after epidural that was supposed to help relieve pain. I am at my wits and the pain is constant 24/7. Is there any help that can be had? I am certainly willing to do just about anything but I will not do cervical spine surgery that will be more debilitating. Because I am already a quadriplegic and all I have is above the shoulders. Please recommend help Help! Anyone!! Pain in my head, neck, and shoulder, fatigue, vision impairment, memory problems, mood swings, depression, etc…

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@davelt1033

I too have many of the same debilitating side effects that were brought on after epidural that was supposed to help relieve pain. I am at my wits and the pain is constant 24/7. Is there any help that can be had? I am certainly willing to do just about anything but I will not do cervical spine surgery that will be more debilitating. Because I am already a quadriplegic and all I have is above the shoulders. Please recommend help Help! Anyone!! Pain in my head, neck, and shoulder, fatigue, vision impairment, memory problems, mood swings, depression, etc…

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@davelt1033 @jarhead

I had a Burst DR spinal cord stimulator implant two years ago for sfn burning pain in my feet and numbness and tingling up to my knees. It initially gave me 80% pain relief. After 18 months it gradually decreased its effectiveness, and now it's still helping with the pain at night time but it's doing very little during the day. Morphine, Klonopin, Imipramine, Meloxicam and Tylenol do most of the work. It would be really nice if the stimulator would maintain its efficacy for a longer time. Now I'm pursuing the option to switch to a dorsal root ganglion stimulator implant. Trouble is it's kind of the last resort treatment. The DRG specialist wants me to hold off as long as possible, and she's working with the man who makes the adjustments to the SCS. Meanwhile, the pain continues to mount. Frustrating, isn't it?

Jim

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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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Thanks for sharing Jim, unfortunately my symptoms are getting increasingly more serious and difficult for me to maintain any kind of normal daily life. My head hurts from sun up to sun down every day I have pain in my neck & shoulder also as well as vision problems, memory loss, concentration problem, mood swings, irritability x10, etc… and I have unfortunately been medicated to the max n the past so much the narcs stopped working, so I quit ALL pain meds, :(now i wis I was a junkie again) the pain is getting to be out of control!! Sometimes has to be done!!

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@jarhead

I've have AA n have been to the pain clinic. My legs go into uncontrollable muscle spasms. Pain clinic would like to put a HF10 spinal stimulation device in me. Has anyone had success with this? There is only "hope" that it will control spasms. I've had several gun shot wound (vietnam) and 7 back n neck surgeries, so why should I allow them to cut me again which they say caused the AA to begin with? Any suggestions beside pain pills?

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I have a friend that it did not work on and I am on a facebook arachnoiditis page and from what I see, for those that it DOES work on it is only their leg pain. I read too much negative stuff so I am to scared to get one afraid it will be worse. I would take the pills if they offered them.

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@davelt103

Thanks for sharing Jim, unfortunately my symptoms are getting increasingly more serious and difficult for me to maintain any kind of normal daily life. My head hurts from sun up to sun down every day I have pain in my neck & shoulder also as well as vision problems, memory loss, concentration problem, mood swings, irritability x10, etc… and I have unfortunately been medicated to the max n the past so much the narcs stopped working, so I quit ALL pain meds, :(now i wis I was a junkie again) the pain is getting to be out of control!! Sometimes has to be done!!

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I found kratom works well. Look up dr forest tennant . He has good pain relief info on ARACHNOIDITISHOPE.COM I tried acetazalomide and it helps with the pressure of the spinal fluid that is blocked by arach. It helps me more than pain pills.

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@kimspr3

I can not find a doctor who will read any of Doctor Tennant Medical information especially the Harmone information for pain.

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i have had aa for 21 years. I finally found a doc that would read tennants info in 2018 BUT he still wont prescribe the necessary meds, much less pain meds. govt scaring all the doctors into letting us die.

Liked by ILoveDoodie

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@davelt1033

I too have many of the same debilitating side effects that were brought on after epidural that was supposed to help relieve pain. I am at my wits and the pain is constant 24/7. Is there any help that can be had? I am certainly willing to do just about anything but I will not do cervical spine surgery that will be more debilitating. Because I am already a quadriplegic and all I have is above the shoulders. Please recommend help Help! Anyone!! Pain in my head, neck, and shoulder, fatigue, vision impairment, memory problems, mood swings, depression, etc…

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Please research taking Kratom. It is a powdered leaf coming from SE Asian trees. Buy the slow strains of it at Happyhippoherbals.com Add it to water, and swig down as fast possible, because it is lousy tasting. However, it is the one thing that does help nerve damage pain. It makes you feel mellow, and takes away all pain for about 4 hours or so. Not all Kratom is alike. The wrong strain may not work, and there is lousy stuff on the market. So shop Happyhippo. The stuff is addictive, so take it every other day. I will tell you more about it if you are interested. True pain relief. That is why people fight for Kratom. Lori Renee

Liked by ILoveDoodie

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@davelt103

Thanks for sharing Jim, unfortunately my symptoms are getting increasingly more serious and difficult for me to maintain any kind of normal daily life. My head hurts from sun up to sun down every day I have pain in my neck & shoulder also as well as vision problems, memory loss, concentration problem, mood swings, irritability x10, etc… and I have unfortunately been medicated to the max n the past so much the narcs stopped working, so I quit ALL pain meds, :(now i wis I was a junkie again) the pain is getting to be out of control!! Sometimes has to be done!!

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Look into Prialt. It's a non-opiod delivered through an implanted device. Not all doctors have worked with it, so find one who does.

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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.

REPLY
@jarhead

I've have AA n have been to the pain clinic. My legs go into uncontrollable muscle spasms. Pain clinic would like to put a HF10 spinal stimulation device in me. Has anyone had success with this? There is only "hope" that it will control spasms. I've had several gun shot wound (vietnam) and 7 back n neck surgeries, so why should I allow them to cut me again which they say caused the AA to begin with? Any suggestions beside pain pills?

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Do NOT allow them to implant a SCS in your spine. it will only makes more pain, in areas where you never had pain. It is a SCAM. Say "No" to it. there are FB Groups for Failed Spinal Cord Stimulators, and you should check them out. Try making a solution of "Sea Salt and Water" and that will STOP your muscle spasms. within TWO minutes. Over the Counter Magnesium Tablets will also help you, but is slower to react. You may have to tale 2-3 tablets, at a time, to stop the cramps–400 mg. NO SCS.

Liked by lioness

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Google Dr. Forrest Tennant as he is the expert on AA

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@danispiderspine

i have had aa for 21 years. I finally found a doc that would read tennants info in 2018 BUT he still wont prescribe the necessary meds, much less pain meds. govt scaring all the doctors into letting us die.

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I do not know if I have AA but I am experiencing much pain, burning pain, and numbness and tingling. I am replying to your post because I agree and am furious that the government and most pharmacies have caved to special interest groups and lobbyists, therefore denying or limiting pain medications for those who really need them. Yes, doctors are scared and with good reason. Even insurance companies have been denying or limiting coverage for opioids and certain other pain meds. I am currently taking several medications that have worse side effects than these pain meds. I have strong feelings on this subject, but I will get off my pedestal. I hope you are hanging in and doing as well as possible or have found a doc who will treat you.

Liked by wisco50

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@ilovedoodie

I do not know if I have AA but I am experiencing much pain, burning pain, and numbness and tingling. I am replying to your post because I agree and am furious that the government and most pharmacies have caved to special interest groups and lobbyists, therefore denying or limiting pain medications for those who really need them. Yes, doctors are scared and with good reason. Even insurance companies have been denying or limiting coverage for opioids and certain other pain meds. I am currently taking several medications that have worse side effects than these pain meds. I have strong feelings on this subject, but I will get off my pedestal. I hope you are hanging in and doing as well as possible or have found a doc who will treat you.

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Did you get an MRI with contrast on your pelvic area because that will show whether you have it or not.? I am not a fan of opioids because when I was on it I never felt right and when I came off it the withdrawal was terrible. It is a terrible drug and all pharmaceutical drugs are terrible with side effects which are sometimes worse than they cure. Thank God I smoke marijuana because that's the only thing that calms me down with my pain and relieves it and the THC does work for pain and calmness. Try it you'll like it!

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