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.

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@debbilee

Thank You, I have been reading about him..You spelled it right..is name is Forest Tennant..I live in Florida am sure we have someone but I might try to get out there .His name is coming up alot..

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Hi. I have adhesive Arachnoiditis. I got it from a botched epidural 15 months ago. There is no treatment for this. Very hard to get meds for pain in Ca. Dr Tennant is not practicing anymore. He does have a foundation I hear. He had his license taken away for prescribing too many opiates. If you find a A Dr in So Cal I would be interested.

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I am looking for a pain specialist. I would not mind traveling outside of SC. I've had multiple back surgeries and my last back surgery in 2022 left me with cps, tingling numbness in both legs and feet. I've lost my quality of life and unable to care for my family. I live with chronic pain 24/7. I am homebound and not getting the right treatment for the root of my pain. I would like to be able to write an email to Dr. Tennant if possible. I have 8 screws and other metal in my spine. I also have lots of scar tissue from surgeries. One of my pain management doctor punctured my right lung during an epidural back injection and I ended up being hospitalized. Another doctor prescribed a pain medication and overlooked that I was taking gabapentin, I woke up gasping for air. I am afraid of seeing any pain management doctor's in my town. I want someone who will listen to my concerns and put me on the right treatment that would get me back on my feet again. Please, help!

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I forgot to mention that I have fluid in my spine and spine trauma. I was told that I should have not have my last surgery. I need a pain specialist that cares, someone that would listen and tell me why I am in so much pain. In 15 days I am going to have a hip replacement surgery. It looks like my hip got compromised from last surgery due to screws placement. Thank you.

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My daughter is in a wheelchair same surgery and symptoms she has had no relief. Please let me know if you have had any recommendations. She is getting ketamine infusions now, botox injections for headaches, and pain medicine that does not even touch the pain.

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@marlenew

Msaliceinpain so sorry this happened to you, you most definitely sound like you have Arachnoiditis and possibility a nipped nerve because it sounds so severe so fast. You need to get a Neurologist or Neurosurgeon to do that MRI on lumber with and without contrast so they can see and read it. My MRI's since my spinal surgery in 4/2015 all say Arachnoiditis can not be ruled out, will my highly respected Neurosurgeon put it on paper as a diagnose? Guess not, I also from surgery now have Cauda Equina. I am in pain everyday with allll types of new and horrible symptoms constantly popping up. The pain meds he gives me are a joke, I need to find a pain management Doctor that understands this disease and how debilitating it is and I just don't know, I'm so afraid they will only want to give me injections and I say h@ll no to that since they are one of the top causes of this disease. I so feel for you this takes your quality of life away and brings you to lows you never thought possible. I am on a Facebook support group called Arachnoiditis Everyday, it helps to at least learn more and not feel so alone. Everyone there talks about an expert on Arachnoiditis in California- Dr. Tennant I hope that's the correct spelling, I don't know if he's taking new patients but I guess it's worth a try looking him up. Best of luck to you.

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Does any one know if this Doctor is retired?

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Has anyone with Arach gotten the shingrix shots ? Reactions ? My Dr is telling me not do , but shingles is so bad. Don’t know which is worse - vaccine or shingles.

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@belsol

I am looking for a pain specialist. I would not mind traveling outside of SC. I've had multiple back surgeries and my last back surgery in 2022 left me with cps, tingling numbness in both legs and feet. I've lost my quality of life and unable to care for my family. I live with chronic pain 24/7. I am homebound and not getting the right treatment for the root of my pain. I would like to be able to write an email to Dr. Tennant if possible. I have 8 screws and other metal in my spine. I also have lots of scar tissue from surgeries. One of my pain management doctor punctured my right lung during an epidural back injection and I ended up being hospitalized. Another doctor prescribed a pain medication and overlooked that I was taking gabapentin, I woke up gasping for air. I am afraid of seeing any pain management doctor's in my town. I want someone who will listen to my concerns and put me on the right treatment that would get me back on my feet again. Please, help!

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You can email Dr Tennant and he will review your MRI’s.

Email:
tennantfoundation92@gmail.com

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Hi,

I am in my 20s and am concerned that I may have arachnoiditis. About 6 months ago, I started developing minor lower back pain with crawling sensations in the area of pain. It would flare up intermittently and my back pain would worsen slightly with each flare up. Now the pain is extremely bad. I am experiencing tingling/vibrating in my pelvis that worsens significantly any time I am sitting down. I also am having vibrating/twitches in both legs along with muscle spasms. I had a lumbar MRI w/o contrast which was read as normal. I don't have any medical history that would increase my likelihood of having the condition (no hx of back surgeries etc.). Do my symptoms sound like any of yours? I don't know what to do at this point.

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I am 59 years old and believe I may have Arachnoiditis but cannot find a doctor who listens. I have been suffering for over 5 years with mid and lower back pain. I do have scoliosis, spinal stenosis and at least 8 Tarlov cysts. I have now started to develop electric like shocks in my back, legs, arms, chest and face, primarily when I start walking on the treadmill or if I stand for too long on a hard surface. I also get high pitched ringing in my ears that lasts for hours and I get the feeling of water dripping down my lower leg/and or sensation of tiny ants crawling near my ankles. I've seen an orthopedist who referred me to a neurologist and both said they cannot help me and offer no real diagnosis and just try pushing pain medication which I do not want. The neurologist actually just stared at me when I asked if intense electrical shocks that make me feel like my skin was on fire was normal. I need answers as to what is causing these symptoms and a real solution on how to manage the pain. Anyone know of a doctor in Texas who specializes in diagnosing Arachnoiditis?

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@2muchpainintx

I am 59 years old and believe I may have Arachnoiditis but cannot find a doctor who listens. I have been suffering for over 5 years with mid and lower back pain. I do have scoliosis, spinal stenosis and at least 8 Tarlov cysts. I have now started to develop electric like shocks in my back, legs, arms, chest and face, primarily when I start walking on the treadmill or if I stand for too long on a hard surface. I also get high pitched ringing in my ears that lasts for hours and I get the feeling of water dripping down my lower leg/and or sensation of tiny ants crawling near my ankles. I've seen an orthopedist who referred me to a neurologist and both said they cannot help me and offer no real diagnosis and just try pushing pain medication which I do not want. The neurologist actually just stared at me when I asked if intense electrical shocks that make me feel like my skin was on fire was normal. I need answers as to what is causing these symptoms and a real solution on how to manage the pain. Anyone know of a doctor in Texas who specializes in diagnosing Arachnoiditis?

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I actually do get the same “electric shock” pains, but in my head. It’s sudden and extremely painful! I was told it’s caused by the cervical stenosis and there’s very little I can do about it.

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