Case study 85 - Adhesive Arachnoiditis diagnosis & treatment EXPLAINED by a neurosurgeon

[@justice4bailey]

Funny how I was never cautioned about this prior to my spinal fusion surgery.

[@TheWheelchairDad]

Thank you so much for being educated about this and spreading awareness! There are so many people suffering with no answers and no help. We appreciate you!

[@BobMitchell-h8p]

Thank you for taking the time to help us understand our situation. Multiple tears by students at a university hospital handed me 2o years of..... well not good at all. I wasn't told they were going to do the surgery. I am giving the spinal cord stimulator a try and going through the process. The last flair up included a cramp in my calf that lasted 8 weeks in addition to thigh/knee/back pain and the typical pain shooting down the leg. Walking is becoming much more of a challenge with the progressive flair-ups. Thank God a married the greatest women in the world!

[@mimidavis2686]

I had a CSF leak after my fourth back surgery. I was fine until I had to sit up of stand. It was an immediate intense headache that would last until I laid back down. The worst part is the physical therapist was pissed because I refused to get up out of bed to walk. Once my neurosurgeon came in and explained why my head hurt so bad and prescribed something to help with it, I was up and walking shortly. Thank goodness!

[@hiltonvg]

I hope you got sealed. 😊

[@ImmaFrogRibbit]

I had a leak after a lumbar puncture. I had to live with that headache for 3 whole months. No standing, no sitting up. I got down to just under 80lbs because any food I ate, I threw up. I wish I knew what I know now back then. I would have asked for a blood patch right away. But I was only 21 at the time. I thought I was dying.

[@MICHELLE-gu2qc]

Thank you for this video. We really need awareness of AA. I developed AA after a missed placed spinal injection. It is so hard to find any specialist to help us, monitor it.

[@SweetTreat-wl2yl]

Pain? Oh yes, pain. But that's not all... there's the large and varied array of symptoms including phantom sensations, such as feeling bugs crawling, biting or stinging. And when you look, there are no bugs there... yet you can feel them, crawling along. Warm or cold water running down the arms or legs. Needles of all sizes, jabbed into the flesh deeply. Knives stabbing, spears jabbing. Those are constant. _Constant_. One that impresses me is the sensation of a large knife or blade, but not stabbing; rather, it feels like a Star Trek transporter is used to materialize the blade right inside the muscle itself, pinching and cutting. Similarly there's the feeling of a steel cable, like a bicycle brake cable, running right from the Atlas, down the shoulder, the arm, and connected to the fingertips. It's tight, and gets tighter, and it's joined by a loss of sensation. That'll get your attention, and that limb is useless for a while. Then there's the invisible 'demon' that stands behind me while washing dishes, who places its large hands on each side of my ribcage, and squeezes... just enough to cause gasping. Passing a hand over a cold oven and feeling it radiating heat. Then there's 'zombie limbs', where an arm, or both, or a leg, or both... don't feel like they belong to me. Heavy, sensation-less, dead. If walking, you trip. If holding something, you drop it. And if you've ever stepped on a nail, the kind that comes out the top of your foot, you'll know what I've felt for the last dozen years, and it's not alone, there's also the sensation that someone has doused the legs from the knees down with rubbing alcohol and then applied a match. 30 years now, and still little is known, little advice is available. When I finally got a diagnosis, after scores of doctors and tests, I was told, "There is no cure. There is no treatment. Learn to live with it." While I appreciate that doctor's honesty, there's no advice on how anyone should do that. I can tell you this... your life is changed.

[@chrism1966]

If you don’t suffer chronic back pain you have much to be thankful for

[@opforsoldier8527]

Adhesive Arachnoiditis sucks. I was diagnosed in '04 after L5/S1 Spondylolysthesis/Spondylolysis surgery. I was also diagnosed with auda equina syndrome. As for what brought about the arachnoidits for me, there could be any number of things as i had multiple ESI's, a myelogram, surgery with instrumentation etc...

[@splovelace]

Dr. Grunch describes this very well. Great details. And you gotta love the compassion she shows, you don't always find that. I've got a double whammy with CES and adhesive arachnoiditis. The combo has been slowly paralyzing me below the waist for years. Though, I have managed to rid myself of all the medications. Thank goodness, I was a mess with everything they had me on. Unfortunately, I recently developed a CSF leak and pseudomeningeocele. It's my second leak since my accident in 1982. This one seems to hurt more then the last one. I've got a wicked ringing in my left ear and a raging headache within hours of waking up. Sadly, my MRI is not scheduled until July due to needing general anesthesia because I'm in so much pain from the arachnoiditis when lying down. SO I guess I have 5 months of headaches, backaches and ringing in the ears before they outline a treatment plan. Bummer!

[@LadyPashta]

Dr, Please see Dr. Tennant's books on Adhesive Arachnoiditis! He shows how they adhere to the walls instead of hang in the middle.

[@lululove6175]

Hi Dr. Betsy: I have Tarlov cysts and Dr. Tennant diagnosed me with arach. I also have a spondy at L4/5 and dont want a fusion. TY for recognizing this awful disease because every doc at Mayo gaslit me and said my Tarlov cysts dont cause pain and are incidental findings. Coded me with pelvic floor dysfunction, Shame on Mayo.

[@jamesmcconnell2473]

Incidentally they're jackass's

[@joycemannion6396]

Well explained for such a misunderstood affliction.

[@joellabrie-ki9bk]

Can you do video about tarlov cyst

[@x7slim8x]

Adhesive Arachnoiditis diagnosis here. Now make a video on how the world is attacking LEGITIMATE PAIN PATIENTS.

[@badgermacleod5588]

Attacked is a good term. It's non stop & you're blamed for the affliction that's usually caused by a doc in the first place. They're not trained to alleviate pain, but they sure love scrutinizing you for OUD all the time. The average person is as bad, if not worse. You're on your own.

[@A.Girl.Has.No.Name.]

Amen!

[@jamesmcconnell2473]

They only attack us due us being monetized by these same freaks we elect. My suggestion is get even by getting better. Can you abide injections ?

[@x7slim8x]

​​@@badgermacleod5588Yeah my Arachnoiditis pain is UNDOUBTEDLY caused by a fusion surgery I had nearly 12 years ago. I had pain before surgery but nothing like this..... daily struggle to keep pushing forward as I am still young. 41 year old man with a wife and kids that can't do anything or go anywhere. Unfortunately pain medications are my only option after a decade of trying everything else. They act like we want to be dependent on a substance, it is literally hell daily....

[@SacredOwl]

I aksed my doctor if he wanted me to be under his care for pain or someone on the street.

[@A.Girl.Has.No.Name.]

This is what I have, as the result of a congenital spinal tumor. I've had an intrathecal pump for pain, and am on my 5th spinal cord stimulator, neither of which help much. Basically, it SUCKSSSS.

[@mimidavis2686]

Oh I’m so sorry that you have to deal with all of this. ❤

[@hiltonvg]

😓

[@susanlicon1353]

I have adhesive Arachnoiditis. It’s horrible.

[@LadyPashta]

Same here. 😢

[@karenatkinson6757]

same here

[@LuckyKat89TV]

Fantastic educator

[@sweetds1]

Thank you so much for your explanation of what this is.

[@hiltonvg]

Great explanation.

[@joellabrie-ki9bk]

What do you think about tarlov cyst.

[@pawelpawel8892]

Tarlov cyst is curable.It puts pressure on nerve roots so once the pressure is taken away pain is gone.

[@joannar.3334]

Looking for exercises specially for arachnoiditis and came across your video, I was diagnosed with adhesive arachnoiditis, caused by transforaminal epidural injection, it is the worst pain you can endure. And not many physicians believe this dx. Or understand it. 😢

[@geetikatibrewal1381]

I have AA with syringomyelia.. have syrinx in multiple level in spine which causes my right body in pain stiffness n spasm all the time.. m walk with Walker.. what is ur suggestion here.. as I have gone through 2 cervical and 2 dorsal shunt placement surgeries

[@TeaBowDuckz]

Can arachnoiditis occur post-NA PmSAH 2/2 the irritating presence of blood in the CSF?

[@suzio9317]

Poor lady, that's very sad for her

[@lindaarmstrongjackman9788]

Rather scary prognosis 👍👍

[@Annuitygoddess]

How can I see or talk to you

[@mohammedfaiq3671]

Nice video

[@joellabrie-ki9bk]

The review concluded that spinal cord stimulation is no better than a placebo for treating low back pain, with probably little to no benefit for people with low back pain or improvement in their quality of life. There was little to no clinical data regarding the long-term effectiveness of spinal cord stimulation.

[@MICHELLE-gu2qc]

SCS can be opening a can of worms. I know a fair amount of people who have nothing but trouble with them. Some have AA and it was ok at first but implanting near the area that's damaged caused more scar tissue, causing more pain as AA progressed

[@adredsox79]

See this is where most drs don’t know there is treatment and surgery that can be done to make people pain free. The problem that the drs are not educated on it. Bonati spine institute does do surgery and successfully.

[@asmith4078]

How do they treat it?

[@philakhoza3281]

I saw that too …. It’s expensive that’s the problem people can’t afford it 23k 😮

[@LadyPashta]

That is incorrect. There IS surgery for it, but it will just re-attach again in a couple of months. That is what happened to those that did get the surgery.

[@Annuitygoddess]

Outstanding explanation... how can i get an appointment with you? I am in florida and am in leval 10 pain

[@LadyPashta]

Level 10 you would not be typing here. Do not exaggerate!!!!!

[@debbysouthwell7631]

@@LadyPashtapeople with chronic pain often do things with pain at level 10 than ordinary people can’t do. I often go weeks or months with a single migraine episode that many of my non-chronic pain friends don’t understand how I still function with. Maybe it would have been better said, that you’d not have been typing that comment if you were having pain at a level 10?

[@LadyPashta]

@@debbysouthwell7631 NO. That is NOT level 10 pain, period.

[@annap1191]

Can it happen after a cervical fusion?

[@00michelle86]

Yes!

[@thatguybri6383]

Help me..please..

[@rn87mom94]

This must be so difficult to live with.

[@LadyPashta]

It is. 😞

[@debbysouthwell7631]

Very difficult

[@lizslilcorneroftheinstitution]

This may come across as one of the dumbest things to ask… but I’ll explain. For whatever reason, a high percentage of my family, from both sides, have disorders/diseases involving the CNS. Including mental health issues. A worryingly high number. So I’ve seen a great deal of these diseases up close and personal. I’ve watched too many times where the negative impact of their disease becomes ridiculously obnoxious. In these situations, more times than not, healthcare providers wouldn’t even consider ‘out of the box’ options. Even at the point where everyone knows and agrees the progression of the disease cannot be stopped, cured or even slow progression. So back to the disease in the video… If a patient has this diagnosis, and has developed paralysis, is it possible to ‘kill’ the nerve from the level of paralysis and down? Or to even have a ‘semi-permanent’ or permanent epidural in place? I’ve seen several creators discussing this disease… and I can’t help but think it’s the biggest bit€h-slap from nature/our bodies to be paralyzed yet endure pain even involving areas paralyzed, that regularly makes them want to remove themselves from the population.

[@Girlwithfusedskull]

Actually the scar tissue could be treated and dissolved by intrathecal hyaluronidase and chondroitinase

[@mpulling44]

How do you know this ?

[@Diane-nr3xj]

My daughter is being helped by a homeopath. I think looking into alternative treatment is something to do, someone told me that acupuncture helped them, no idea if Chinese medicine can help! When you’re in so much pain, I think you’ll try anything!

[@joellabrie-ki9bk]

Empty sack. .

[@Sucheta211]

Got it! 🎉