Arachnoiditis - My Story-July 2021
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- เผยแพร่เมื่อ 1 ก.ย. 2021
- This is my story of how I became aware that I had Arachnoiditis and some of the symptoms that I have experienced from the onset. Please let me know if you have experienced any of these, especially the blurred vision. Thank you for watching my story and I wish you well.
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Please view my other videos on Arachnoiditis for what I am learning along the way. Hopefully, it will help you, too!
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I had the same condition for nearly 2 years. One pain doc couldn’t help me. Then second one ordered a mri. When it came back he told my wife we needed to get the spine doc involved. He ordered mri with contrast to be done on the same machine. When it came back, he ordered surgery. He cleaned out all the “crap” and a laminectomy on l4 and l5. I woke up a new man and I’m nearly 83. I’m great! No pain or movement restriction.
I’m glad that helped you but there is no cure for arachnoiditis. The nerves stick together like spaghetti and attract more nerves to stick to it. As they stick together you get more neuropathy and more numbness.
That's amazing! I read that it usually comes back, has yours? Who was the doctor that did your surgery, please?
@bonitabradley8213 dr told me with arachnoiditis if you a surgery with this I could be paralyzed not to have surgery....pain control is all you can do
I’m sorry but I have catastrophic AA. There is no “cleaning up all the crap”. A laminectomy is for repairing a ruptured disk. Your story is confusing and opposite of everyone I’ve talked to with this disease. I honestly don’t believe you had AA or you would add how much pain you were in. Extreme pain. Yeah…
You did not have adhesive arachnoiditis. Lucky you.
Hi Bonita, my name is John. I finally rc’d my AA diagnosis about 9 years ago. I’m trying to collect what meds everyone is on to see if we can’t find any doctors approaching this disease the same way. Dr. Forest Tennant is by far the leading doctor in America regarding AA. Unfortunately, he is now retired but you can find his materials on- line as well as on here.
As for vision I have “some” bluriness that I thought was from needing new glasses. I got new glasses but still I go blurry every now and again. Most of my pain is from my diaphragm and below except for the damage being done to my brain from this. Constant overworked and never at rest because it’s processing pain where there’s no injury (like the feeling of a twisted ankle). There’s nothing technically wrong with the ankle it’s the nerves telling the brain pain signals. Two minutes later your ankle is better but then your leg bones feel like they’re being crushed. Mine moves all over and is constant, horrific and I would not wish this on my worst enemy. I am always here to help with questions you may have. Maybe I can answer but I’m trying to collect “victims” of this disease so we can work together to see what works. In Michigan, I have not found one doctor who hasn’t said, “Mr. Thompson I’m sorry but you seem to know more about this disease than we do.” It sucks. As I once read on a med journal “this disease comes with the pain of cancer but without the relief of death.”
I know this sucks to hear but if you need answers, help or just someone with AA to talk to I’m available as I’m on disability.
Dr. Tennant is still available to look at your MRI's and consult by mail/email. I spoke to him personally. Contact info is in the description box.
I HATE the gaslighting and lying they do. They cause this most of the time and blame it on us or just act stupid about it as if they're dumbfounded.
The Dr. acted like it was something that happens once in a while like it was my body's reaction. I researched it and found out he caused it and was outraged.
@bonitabradley8213 I can't even imagine what you go through and the anger you must have not only towards the Dr but also for the grief of losing your old life. I have severe scoliosis and was fused at 15 years old. I'm now 27. Thankfully I'm protected from epidurals because my scar line from spinal fusion is too long so nobody will attempt it. However my surgery failed and I'm now in chronic pain 24/7 and cannot move my back. I'm sitting at a 7 - 8 of 10 on a pain scale daily. Flares are a 10. My surgeon lied to myself and my mum and said I'd be worse if I didn't get it.
I am 29 and had L5-S1 Discectomy and laminectomy 4 months ago because the herniated disc was very painful. After completing surgery I have had nothing but complications including a post operative bleed and fluid collection. My neuro surgeon keeps saying i am opioid shopping and nothing is wrong even when the radiologist pointed out that i am developing arachnoiditis.. My neuro surgeon and i have been going back and forth for a few months now and she just does not believe me. I took my images to the university hospital here where the neurologist confirmed that I indeed have arachnoiditis of the arachnoid and the left and right nerve roots. I am so sick of doctors being so conceded and not willing to admit some of the things they do don't work. This is giving me migraines, visual snow, lethargy, nausea, TERRIBLE pain, insomnia ect. I am sorry to hear what you are dealing with.. This healthcare system is a joke
I was able to finally get in to see a nerve specialist who at least acknowledged my pain. This upsets me so much that they cause this and then deny our pain.
Really sad. i had the same issue , an epidural gone bad with a leak as a result, received 2 bloodpatches 4 days later. I will share your story in the Arachnoiditis Belgium facebook page.
Thank you
I've just found you on here. It's good to find someone who has a similar story to my own. Most likely my event happened in January of 2022..a fusion surgery where the dura was nicked and caused a CSF. Several days later I had to go back into surgery to repair the leak.
Have you had an MRI since then? That is how mine was detected after the puncture. There isn't anything they can do for me but it helped for me to know what I was up against. Good luck to you.
@@bonitabradley8213 yes, I was found to have arachnoiditis two months later by MRI. For about 5 months I was bedridden in a lot of pain, even with meds. Then ketorolac/Toradol prescription injections were given to me and they've made all the difference.
Wow Im glad they were able to get you an MRI so quick. How did they treat you once you had a diagnosis? Also was the botched epidural done on your neck or low back?
It was done on my low back and I have yet to be treated. I’ve seen two neurologist, two pain specialist, and the only thing they want to do is put in the spine stimulator which I have heard horrible things about and have refused. So I just deal with daily pain
This is my story, almost to the tee. I am going on 5 years since , I am now treated through a pain clinic .
Thank you for your reply. I am so sorry this has happened to you. We need to build awareness that this can happen. I had no idea this type of thing could happen. I was only told how much better I would feel and that it would only hurt for a little bit and they be over.
I, too, have arachnoiditis. 7.5 yrs ago I had a benign tumor in between my dura mater and arachnoid mater that hemorrhaged, causing extreme pain. Went in for emergency surgery...L3 laminectomy and resection of tumor. Had occasional tingling in legs afterwards, nothing major. Now, 2 years ago i stated having constant burning pain from hips to toes, weakness in legs, issues with using the bathroom, and spasms. MRI done, then Neuro said "I'm sorry, but there's nothing we can do for you. You have arachnoiditis." I'm only in my early 40s. 😔
Also, I have occasional blurry vision. I'm very light-sensitive now. I can't stand or sit for too long... gotta keep moving. I'm tired all the time, but I suffer from insomnia due to the nerve pain and fighting with charlie horses. I get nauseous almost daily. I used to be very fit and played sports for decades... now this is my life.
I hate it when docs say that. This is a disease of inflammation. There are a lot of things that can’t be cured but they can be treated.
I have many of those same symptoms. I have had 4 pair of glasses in the past 2 years since this happened. I have the burning down the legs, numbness, spasms, cramps, trouble sleeping, etc. God Bless
I have vision problems blurred vision. I have all the stuff you have.
For me that has been the scariest part.
this is an old video, are you doing any better now? I'm going through it currently and it's so scary and I'm terrified of the future
I have had ups and downs through this process, and I had a fall in my living room in July 22 and since then I have had so much pain. When I was down with Covid for about a month it got better but I’m still working full-time and it just aggravates it so much. Everybody is different and I know I have had multiple injuries and I think they are all just playing off one another.
How sad. My story started when I had 2 knee replacements with spinal anesthesia a year apart. The first one I had some back pain and blazing fire down the inner thighs which my surgeon thought was spinal stenosis (unrelated to the surgery) because it happened several weeks after the surgery 2011. It eventually got better on its own but I still had some sensation issues in both legs. The second surgery (2012) with the spinal anesthesia several weeks after the same thing happened and the symptoms were worse, far more intensified. No one knew what it was. Not even my anesthesiologist who is a friend at work (I’m an RN) I was using lidocaine patches and had a pain MD give me a compounded cream that had to be applied 4 x daily. The symptoms still remain albeit not as severe but as I got older I am still having paraesthesia in both legs, feeling that bugs are crawling on my lower legs and gradual weakness/heaviness. I finally was diagnosed in 2015 by a neurologist and now know there is no cure. Maybe a spinal cord stimulator. No way will I ever have another procedure that involves my spinal cord unless absolutely necessary. I manage this by taking a Tramadol once maybe twice daily if I can’t blow off the symptoms. This seems to help the nerve transmission to help me walk better. It’s also been known to act as an antidepressant. And Motrin for the back pain (which may be arthritis also ). I know that there are others who are completely disabled by this and its treatments. I am grateful that I can function as well as I can at my Age (68). A big help was finding Dr Tennet and listening to his videos. Good luck to you on your journey to wellness.
Thank you so much for your comments. Yes, I am scared of the spinal stimulator as well. I am so frustrated that a dr. can do this to someone and then just go on with their life like nothing happened and here we are stuck.
The correct spelling is Dr. Tennant. Dr. Forest Tennant.
Don't do the simulator, it will NOT work. They just recently released a study showing it doesn't work for lower back pain, look it up.
Btw, you can get a lawyer and sue him...
There is no way I would sue him. This is a untoward side effect from spinal anesthesia. He did nothing wrong. Many people have successful spinal anesthesia without these side effects. I would not have a spinal cord stimulator for my degree of disability. (Sorry for the spelling error. )
This happened to me 21 years ago. I woke up from surgery to repair an injury to my back. I had the worst headache. They didn’t give me drugs but had me drink so much water. I drank so much water I blew out my bladder bc my cath and bag had not been emptied. I’m not sure the Dr punctured the spinal cord or a bone fragment from the injury had punctured it. I had horrendous pain down my legs, screaming neuropathy! My Dr said I’d never walk again and loose bowel and bladder function. I think it was my stubbornness that kept me walking and although I had some bladder problems, I kept going. Over the years I’ve had continued pain so I’ve been on meds for ever. I’ve had gastrointestinal, bowel and bladder problems but not constantly until the past 3-4 years. Past 2 years I’ve had to wear pads. My eyesight has gotten blurry like I’m having a migraine. Headaches all the time. I’ve lost my balance so I fall. The pain has really increased in my legs. I feel like I have dementia or Alzheimer’s. My legs and arms have lost strength. Arachnoiditis travels from the back to the brain. I’ve lost common sense and ability organize. That’s what you can look forward to. My legs and back hurt so much and I have more spasms. Next stop-wheel chair or scooter if I’m lucky. But I have had 21 years of not such constant fun. I’ve got 4 grandkids that I love so much and I’ve been able to do things with,especially laugh. I’ve had lots of dogs that have been my kids and enjoyment. Traveled around the southwest a lot and have lived in some nice places. Seen a lot of beauty.
Do you take Lyrica or Gabapentin? They will also cause incontinence. I worked for the Dept of Aging and every person on those meds had incontinence. It was starting to happen to me too and I got off of them and regained continence, thank God. But I never had a catheter or those other complications. It is so frustrating that we go to them for help and come out worse than we went in.
Hi Bonita, I have arachnoid it is 50 years . Yea, Fidty years. Now I am facing a Hip replacement.
God Bless. I hope the hip replacement goes smoothly.
So sorry. I had a Myelgram last Friday. I have multiple lumbar issues as usual. However there was something new on the report. Chronic Adhesive arachnoidiitis. I’m like what the hell is that. Apparently the leg weakness and bladder issues are being caused by AA. Monday my urologist was ruling out my bladder as the problem. He gets the scope is and what do we see? A blob of bladder cancer. So over two days I find out about my AA and bladder cancer. My brain is swimming. I’m not sure what to worry about first. I have surgery the 28th to remove the tumor. I still haven’t heard from my neurosurgeon about my spine issues. I’m so confused. Take care
I am so sorry for the news but glad the cancer was found. I am 2 1/2 years into my AA diagnosis. We can support each other through the changes. God Bless.
I'm T9 Spinal Cord Injury of 10 years. I was told by a leading spinal surgeon and a leading Pain specialist in Australia that Arachnoiditis can only be diagnosed unfortunately, when your dead as the test for it is analysing spinal fluid and marrow is extremely invasive and can kill. Doctors have been telling me that I have the Adhesive Arachnoiditis in my spine around C6 level but again, cannot be confirmed due to the test involved. It cannot be done on a live person!🇦🇺
That is not true. You need an mri with contrast.
@@joannewittenbrook8051 had three in the last 10 years. All inconclusive.
Yes, this is how mine was diagnosed and also confirmed by specialists and Dr. Tennant from the Tennant Foundation for Arachnoiditis.
MRI will show arachnoiditis....
@kathywhitaker1042 yes Arachnoiditis will as that's scarring but not the adhesive type. Had this confirmed again by a Rehab Medicine Specialist last week.
Hello I have recently been diagnosed with arachnoiditis four months ago by my MRI. I experience severe back pain, leg pain, and temporary paralysis I'm scheduled for a major spinal surgery next week and I scared
Please let us know how your surgery goes. God Bless.
I have tons of issues with my spine. I have 6 incomplete fractures. Bilateral L4 and L5 and the most recent spinal cord injury as an incomplete wedge fracture of the T11- T12 thoracic region. By the grace of God I am still vertical and I am still walking and I have not had to do therapy or anything my bones just broke I have osteoarthritis osteopenia and osteoporosis three different kinds I have rheumatoid arthritis I have spondylosis I have so much stuff wrong with my back I can't even begin to tell you but one thing you have to start doing is make your doctor listen to you. The Drs don't tell you anything, they just say you need this procedure and They don't tell you what could happen if you have the procedure, they just say we need to do this and people just go along with it.
If it's not an emergency I make the Dr explain why he wants to do it what it's supposed to accomplish and how often it has to be done. Anybody with a spinal cord injury it's so traumatic that you don't know what you're supposed to do and there's so much to learn about it that it's hard to even know if you're learning the right stuff you have to make sure that you write down every single thing that the doctor tells you that you are diagnosed with every single time you go to the doctor especially the ER if you go to the ER you can say you need to tell me what I'm diagnosed with like I need to understand what I'm being diagnosed with and I want to write it down and I want to have a paper with a confirmation date on it it's important and part of getting social security in the future too is the day that you are going to be diagnosed with it and if you don't have that paper you're not going to get social security going back to the day that you actually were diagnosed with a spinal cord injury I went through it I know you have to advocate for yourself no one else is going to you have to do your own research no one else will and you can go down a rabbit hole when you do that especially with spinal cord injuries you have to remain focused on what you're looking at and think of it as a lesson in school that's basically you're going to be teaching yourself how to become a spinal doctor the only thing I can tell you make sure that the people around you are supportive because you're going to need some assistance and the people that are around you they need to be able to explain what's wrong with you to somebody else in case you can't once your diagnosed with something you can call the national organization for rare diseases and disorders if you have a rare disease or disorder you can get some assistance from them and that's even if they have a program they can pay for medication but you need to contact them it's Nord national organization for rare diseases and disorders and if the doctor doesn't know what he's doing he can call genetic and rare disease information center and somebody that specializes in that genetic rare disease they can help the doctor to figure out how to treat you especially if the doctor has never treated somebody with that condition before and you live in a smaller town or can't travel to a bigger town or can't go to somewhere that you're going to have to have a specialized doctor that has seen a patient with this rare disease or genetic disease they can call the genetic and rare disease information center and the doctors can get assistance from other doctors that actually specialize in diseases
I have tried to get in Kansas City, the closest dr that has experience in Arachnoiditis and have been unsuccessful. It is so frustrating. Thank you so much for your thoughtful comments ❤️❤️
Hi, my name is Andre Bomjardim
I was diagnosed with arachnoiditis disease,
I would like to know if there is a cure or treatment with stem cells here in Brazil, or even abroad.
Thank you very much in advance.
I think they are doing some stem cell research on this but I am not knowledgeable on that
There is no cure. There is experimental treatment with step cells.
I feel so bad for you can you sue them for that?
No dr will speak against another dr especially when they still refer to him around here.
I take it you aren't in pain, at least? I have Adhesive Arachnoiditis and am in a lot of pain, 24/7. I do randomly get dizzy, blurry vision, groin buzzing or pain down my right leg.
Pain and symptoms depend on where you get clumping, btw.
I am in pain most days. Some days I have a good day depending on what I've done.
This pain is not normal pain.....if it's my back ...I have to lay down for alittle while ...if it's my legs feel like shin splints and the burning oh the burning and so painful ...I told the dr I just wanted to cut them off he made alittle laugh because he knows me and told me my luck I would have phantom pain....he's right I would....now let's jump up and down for joy when the feet start neuropathy oh yes rub rub fub... tried it all pain meds many different ones to pain patch oh those made me so off and sick...stimulator and pressure point shot in my lower pain...yes that hurt badly ......sleep what is that even with pain pill and sleeping pills...even tried depression meds because they said they helped with pain....nope not really.....but during the night when everything is keeping me I have to move around...I do get housework done ....oh and the headaches aren't they fun....nope....emgility shot 1 a month....I tried the botox in my head like 32 shots nope after number2 it just made me off and my eyebrow fell...oh to joy.....prayers over anyone with this ...I will keep doing and moving till I cant
@@kathywhitaker1042 So sorry to hear that, Kathy. My pain wakes me up sometimes, it really sucks.
When it happened to me it hurt so bad to sit and peee I was crying in pain.....it turn or move was like the need to scream.....the dr wouldnt even call back.....never again have another nerve block it will make it even more awful... this has no cure.....I had 85% of my large intestines removed last year it just quit working....a couple of years ago I got the stimulator for pain and it messes with my head...I have blurry vision and ringing in my ears all the time now.....cant find a proper dr that really knows about this is so hard....one dr said never let anyone do any surgery in my back that I would paralyze me ....nothing can be done but pain management ...ugh......clumping in what they call horses hair is what I have and it's attaching to the wall.....I'm so sorry you have this I believe with every person getting a nerve block they should tell you about arachnoiditis and the dangers if you get it.....sad they don't because the pain keeps getting worse
Yes it does. I am in a bad way right now. I have hardly been able to stand or sit for 2 days. They did not even tell me the risks of this procedure which is required but no one seems to want to do anything about them no following medical information requirements.
@Bonitabradley8213 are you taking ketorolac?
@@bonitabradley8213 prayers
@@debbiebaker5303 no I have not heard of that
@@bonitabradley8213 it's one of the meds that Dr. Tennant recommends ( also called Toradol) and it made a HUGE difference in my pain.
Look up Forest tennant. I believe west covina, California. To me he is the only one who understands the condition. He uses a treatment using cortosteriods, certain herbs and some pain medicines when needed. True Arachnoiditis is inflammation of the nerves inside of the spinal canal which can cause pain, burning, numbness, pins and needles in your legs feet and saddle are. Left untreated it can increase to adhesive arachnoiditis which is when the nerves start to stick together. I do not believe surgery could fix or cure arachnoiditis. You need neuro anti-inflammatory medication to suppress the inflammation. Those medications must be able to cross the blood brain barrier. Unfortunately this can be caused by an epidural injection given improperly that they went to far and possibly injected into your spinal canal. The cortosteroid some doctors use is depomedrol. I say some not all. Depomedrol is not intended to be used in the spinal canal area. Depomedrol is supposed to be used in joints such as knees, shoulder. You also should not have had an immediate reaction from the procedure. That is not supposed to happen and is not a great sign. It should be a relatively pain free procedure except when the needle first goes in. I unfortunately had two of these epidural injections given caudally in 2018 and 2019 with depomedrol. The first one was fine the second one i had a reaction but more in my legs, feet, they became extremely stiff and numb and after my lower back was extremely painful. I also felt numbness in my saddle area. Now this is not an easily diagnosed condition. It needs a proper MRI diagnosis. With thst said look up Forest Tennant, west covina California. He is an expert in this particular condition. Dont believe what everyone says. Technically we all have arachnoiditis in our backs its just some people shiw symptoms and others do not. Hope this helps
I watch Dr. Forrest Tennant as well. I believe I have adhesive arachnoditis and cauda equina syndrome. No formal diagnosis though in 7 years. I have pretty much all the symptoms Tennant describes.
I have his contact information in the description box of my videos and have spoken to him. He reviewed my MRI's and confirmed Adhesive Arachnoiditis. He is a very kind man.
@@elizabethferrari1346 Have you sent him your MRI's? He will review and diagnose for you.
@@bonitabradley8213 hello. I have not sent him my MRI'S. I knew he reviewed them prior I did not think he still reviewed MRI's. Maybe I should send him mine. I have had an increase in neurological issues since receiving the 2 epidural injections in 2018 and 2019.