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.

@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.

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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

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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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@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.

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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.

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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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@donfeld

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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@donfeld MRI, yes, with contrast, no. I'll talk to my doctor. I don't think I want to smoke Marijuana. I haven't done that since high school and I didn't really like it then, but if it works for some folks then go for it.

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Please join the Facebook Group, "Arachnoiditis: Together We Fight". Then you will need to get an MRI of your Lower Lumbar with/without contrast. Then have a copy of that CD, mailed to: Dr. Forest Tennant, Tennant Foundation, 334-338 Glendora Avenue, West Covina, CA 91790-3043. He will take a look at your images, and give you his diagnosis of your condition. Like you, I had an ESI injection in L5-S1 that went horribly wrong, and it caused my AA. I have been suffering in ecruciating pain for more than 19-months, now, and just got my diagnosis, from Dr. Tennant, tonight. Please join this FB Group, listed above. You will learn so much and will have access to a lot of information. Go to: arachnoiditishope.com and print out the most important information for AA Sufferers, that Dr. Tennant has researched for us. I live in VA., and there are just 1-2 dr.'s, in this state, who know anything about AA. Print out those AA Handbooks, and take them to your dr. appts., as you will need to educate your PCP. PM Doc, and any other spine doctors. It's quite a painful journey, but once you get started on the Dr. Tennant's Treatment Plan, you will begin to get better and feel so much better.

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I was repeatedly told that I did not have AA, too. Once you get your CD with MRI Lower Lumbar images to Dr. Tennant, you will find out, otherwise. Good luck and follow my advice, above, so you won't feel alone in this, msaliceinpain.

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