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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Hello, Happy Aqua Therapy worked for you. For me he pressure walking against the water put too much pressure on my spine. I had PT after my fusion 2016 I was sent to Kessler Institute where Superman Steves Reeves was. They were so good. They are in West Orange and Chatham. NJ. I was there for 3 weeks. Dr. Tennant told me that no more can be done. He emailed information to give to my Pain Management Dr..medications I should be on. He is also an Anesthesiologist, It is depressing being told "nothing more can be done for me" Why was I not told of the 90% of the true meaning of Failed back Syndrome? When the Dr's told me my Diag. They closed the door. If I knew I would not have gone on and on and on trying to find Drs to find out what was wrong me and I was getting worse. No more surgeries, Ablations, nerve blocks and more. The trust I had in their decisions changed my life. I find it disparaging that no one is interested in the in AA and how to make patients aware than, make a decision. I think about that a lot,For me, I can't find any answers? Question, Patients with AA have they seen a change in brain activity. I do't know how to word it. Thank You Joan, my best to you also

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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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In reply to Bforman, I no longer see or look for Neurosurgeons, spine surgeons. The more is done chances of getting worse. There is a Dr. In Calif. Dr. Forrest Tennant. Interest includes AA, he started a Foundation. Some of us are in touch with him. If you live near the NJ areas I have a very Well know Pain Management/Anesthesiologist. Anesthesiologist is a big plus in care. His name is Doctor S. Datta, Pain Management, Hackensack NJ. His practice also includes CancerCare, MS and more. Easy to find him on the Internet. Also can find him, Dr. S, Datta Naltrexone. non-opiate pain medication. He put me on it starting on a very low liquid dose given in an eye dropper. I just started. I hope I can help at least a little for all of you in pain.

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@pinkslw

Are you a part of any of the support groups thru Facebook?
I know and understand what you are dealing with as I too have been dealing with this for just a little over a year. The feeling of despair tends to rule my day more than anything other than the pain. I understand and hope you look into the groups, I'm not much help right now because I don't know how I keep going to bed and waking up, but there's a ton of support. Arachnoiditis and Arachnoiditis Everyday are in the search on Facebook. I have been told there is no fixing, just learning to manage.

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Has anybody tried PEMF (Pulsed Electromagnetic Field Therpy? I have a neighbor that swears by it and it'll really help some relaxing sleeping definitely controls his pain but I wonder if anybody has it for AA?

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@lisalucier

Hi, @toiolinger – Mayo Clinic does not host any facebook groups on arachnoiditis, but others may know of some. However, I'd really hope you'd stay here on Mayo Clinic Connect to talk with some of the many members posting about arachnoiditis, like @JeyLei @lconroy @ginpain @meatmouth1 @cj1010 @galady @caklady @geezappeal1 @annmaria @tepping8382 and others here in this discussion in the Connect Brain & Nervous System group who've talked about arachnoiditis, or in this discussion in the Connect Chronic Pain group, https://connect.mayoclinic.org/discussion/arachnoiditis/.

I noted you mentioned you will be going to see a doctor about symptoms similar to arachnoiditis to get a confirmation of your diagnosis. When will you be going? How is your pain today?

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Has anybody tried Pursed electromagnetic field therapy? PEMF. Male wants me to do a stimulator and some doctors I saw said don't do it. Has anybody had any success?

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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 A.A. curious what is PEMF?

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@kimspr3

I have A.A. curious what is PEMF?

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Kim, I am scared and frustrated like you and I am having a conference call tomorrow with Dr. Pawluck who says he can help with our condition. I have a neighbor who's been suffering with back problems and disc problems for some time and he tried this apparatus and he can't believe how much better he's feeling with 80% less pain and sleeping at night. Increase blood circulation which promotes healing an inflammation reduction. Google his name and you might get some more information and pemf stands for Pulsed Electro Magnectic Field and been around for years as well as NASA USES it for astronauts who have been weightless for a long time and cannot stand the gravity coming back to Earth. Is all kinds of good stories about it and course we're desperate so will try anything especially if we can rent the machine to start off with and some manufacturers say though you can try it for 45 days and it doesn't work you can return it with no obligation. I have that information to. Very frustrating from the Mayo as I sent Dr tenants information to doctors with no response. No research no formula all they want to do is give me a stimulator in my spine which is not recommended at least not now. If you're at the beginning stages now is the time to act. Hope this helps. Don

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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 don, I'm sorry it took me so long to respond! I hope I you waited on your procedure? May I suggest to wait until you hear from Tennant. I have learned the hard way jumping to have procedures done do to pain. What state are you in to look up Dr. Pawluck so I can look him up. I know you went to the dr. but did you have the procedure or waited?

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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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