1. < Spine Health
Profile picture for arannek72

Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

Interested in more discussions like this? Go to the Spine Health Support Group.

Profile picture for laurenseavertson789
laurenseavertson789 | @laurenseavertson789 | 5 days ago
In reply to @mdmo "Pam, I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that..." + (show)
Profile picture for mdmo @mdmo

Pam,
I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that punctured my dura space requiring spinal blood patches to stop the leaking spinal fluid.
In 2013. I had a Medtronic intrathecal morphine pain pump implanted. If you read about Arachnoditis/ Failed Back Syndrome/ Post Lamenectomy Syndrome the gold standard for treatment is a Intrathecal morphine pain pump. They can fill it with just morphine, or a combination of medications.
I'm currently detoxing from my pump after 5 years slowly 15% titration per week. Withdrawal symptoms are something j do not want. So slow goes the reduction.
You should read all you can get your hands on by a doctor, (Dr Forrest Tennant) He opened the eyes of many doctors about Arachnoditis and how to treat it. But.....due to the pressure of the DEA, (Drug Enforcement Agency)
He was forced to close his practice. He was an amazing doctor, he truly had mercy in his heart and soul for his patients
Hope this helps.

Jump to this post

@mdmo I am on Dilaudid 2 mg every 4 hours, plus valium for Adhesive Arachnoiditis. I have been on here before & guess u can see my entire whining situation. This doesn't help my pain too much ( but I've gone thru hell, just to get this. I have taken Dr Tennant's papers to doctors, none of them are interested. Am a retired RN, spine fused thru C3 thru sacrum. Pain clinics are a joke, have been to several. The one i have now seems to be a pill mill for really messed up people, like myself. I literally get 3 minutes with my pain Nurse. So do all the the others, as we have talked about limited help, outside after appointments. Arachnoiditis has ruined the last 25 yrs, plus of my life. I can't sit up or type, due to extreme pain in my neck & shoulders. Most of my pain is in my legs, feet toes. I have no lower back pain, probably due to my fusion.. Does pain pump help this type of pain? I had a trial with Dilaudid, but i get such extreme constipation, i didn't get the pump. besides my doctor doesn't want to put it in my neck... I have another stimulator in right side of spine (DRG), & hardware entire spine. So i am not exactly a great candidate. Plus my UTI's are drug resistant, due to suprapubic catheter. My name is lauren Seavertson. Sorry, can't sit up. Need to go to the hospital tomorrow AM, another UTI... i am really scared, as my kidneys aren't great & running out of antibiotics to take. Only good thing, is that i live in AZ & on ATLCS AZ, long term care & i am now so poor, i don't have to pay anything, for my lousy care. Can't sit up now, please write, if interested

REPLY
Profile picture for thoraciccyat
thoraciccyat | @thoraciccyat | 5 days ago
In reply to @laurenseavertson789 "@mdmo Lauren Seavertson. I've had Arachnoiditis for about 25 years. I now live in a suburb..." + (show)
Profile picture for laurenseavertson789 @laurenseavertson789

@mdmo Lauren Seavertson. I've had Arachnoiditis for about 25 years. I now live in a suburb of Phoenix, in the cheapest retirement home in the valley. I was taking Dr Tennant's papers to my doctor's. Not one was really interested. I'm former RN & can't believe the ignorance, or attitudes of most doctor's They say the health care system is broken & of course getting worse with our new administration. My current pain clinic is a joke. I went there because every one says a pump is only answer, I had a trial of pump with Dilaudid but 95% of my pain is in my butt & down legs, with very severe, bilateral sciatica & horrible pain down both legs & bilateral pain both feet, top & bottom, & in every toe now. This all simultaneous. Sorry, but think iv'e lost about 20 IQ points. Had a substitute pain doc, since mine on vacation. She's familiar with Arachnoiditis & gave me Dilaudid ( allergic to Morphine) I didn't even have to ask. I get 2mg pills, one every 4 hours. it's better than OXY, but it really doesn't help that much... I'm fused C3 thru sacrum & all my whining is somewhere on this site. No doc's in this valley want to treat me, as a PCP. The minute i talk about managing my steroids, when i get a flare, they say they don't do that. Takes 6 plus months to get a neuro appointment & most neuros i've contacted tell me it doesn't interest them, because it's not interesting & u only need steroids. They all sub specialize. I have what looks like a small pharmacy in my little kitchen. I also get valium for, when i get my horrible, awful pain. Nothing much helps & I'm afraid the feds will come in & cut my meds, because they are doing this in Phoenix. I used to go to the hospital & beg to be hooked up to stronger meds ( used to get Dilaudud or Fentanyl & some benzos) but i'm afraid, as the damn Opioid crisis ruined it for everyone one of us with legitimate, severe pain. Since I'm fused everywhere, my pain is from top of my neck down both legs, feet, all toes. I can only lay flat & typing on the computer, is absolutely impossible. Had trial of pump with Dilaudid but not sure if it helps, cause no real back pain, it's all horrendous nerve pain in lower extremities. & in my neck & upper back, from all my hardware. I was totally paralyzed with MRSA in my spinal cord. I recovered from that some what, because i was in Northern US & got fantastic care. Now have permanent suprapubic catheter, with drug resistant. & infections & get horrendous flares & no one will manage my steroids or wants to mess with me & they tell me just take steroids, not difficult etc Can't sleep, can't use my arms much... I'm depressed & have a PHD with remote therapy. She's great, but I'm so isolated as i can't go downstairs & go to senior fitness or go to the dining room etc... I try, but i also have a torn rotator cuff & need a new shoulder... feel like i have wasted last 25 yrs, & I'm thinking that I'm going to die soon. I'm on Medicare & Medicaid, so out of most money ( of course, this get's in the way of a lot of good doctors etc) Need help, but some god docs just say they feel sorry for me. Any suggestions? Would love to talk to other's with this horrible condition. Hate Arachnoiditis & i'm sorry for typos, but feel like i am going to pass out!!! Sorry i am whining again

Jump to this post

@laurenseavertson789
Hi Lauren,
I too have Arachnoiditis. I had 2 surgeries from T-3 to T-10 to repair an Arachnoid cyst and a Syrinx just at the end of the cyst.
The pain by itself causes suicide and the electrical issues are crazy. Im so looking forward to leaving my body

REPLY
Profile picture for cto
cto | @cto | 3 days ago
In reply to @toiolinger "Hi Rachel, I am so sorry what that doctor did to you. What an idiot. I..." + (show)
Profile picture for toiolinger @toiolinger

Hi Rachel, I am so sorry what that doctor did to you. What an idiot. I don’t know what caused all this pain. I have several steroid injections, three back surgeries, and cat scans. I am making an appointment tomorrow to an neurologist to
confirm that I have Arachnoiditis. People don’t understand how much pain this disease causes.
They would say but “you look good”. I read about the hormone imbalance from Dr. Forrest Tennant’s article. I contacted my
Primary Physician and she said the hormones are NOT recommended for someone over 65. The side affects are too risky. Thank you.

Jump to this post

@toiolinger find an integrative physician who does bioidentical hormones. I firmly disagree with your PCP. So so tired of hormone therapy misinformation. It can be transformative.

REPLY
Profile picture for sherij
sherij | @sherij | 2 days ago
In reply to @laurenseavertson789 "@mdmo Lauren Seavertson. I've had Arachnoiditis for about 25 years. I now live in a suburb..." + (show)
Profile picture for laurenseavertson789 @laurenseavertson789

@mdmo Lauren Seavertson. I've had Arachnoiditis for about 25 years. I now live in a suburb of Phoenix, in the cheapest retirement home in the valley. I was taking Dr Tennant's papers to my doctor's. Not one was really interested. I'm former RN & can't believe the ignorance, or attitudes of most doctor's They say the health care system is broken & of course getting worse with our new administration. My current pain clinic is a joke. I went there because every one says a pump is only answer, I had a trial of pump with Dilaudid but 95% of my pain is in my butt & down legs, with very severe, bilateral sciatica & horrible pain down both legs & bilateral pain both feet, top & bottom, & in every toe now. This all simultaneous. Sorry, but think iv'e lost about 20 IQ points. Had a substitute pain doc, since mine on vacation. She's familiar with Arachnoiditis & gave me Dilaudid ( allergic to Morphine) I didn't even have to ask. I get 2mg pills, one every 4 hours. it's better than OXY, but it really doesn't help that much... I'm fused C3 thru sacrum & all my whining is somewhere on this site. No doc's in this valley want to treat me, as a PCP. The minute i talk about managing my steroids, when i get a flare, they say they don't do that. Takes 6 plus months to get a neuro appointment & most neuros i've contacted tell me it doesn't interest them, because it's not interesting & u only need steroids. They all sub specialize. I have what looks like a small pharmacy in my little kitchen. I also get valium for, when i get my horrible, awful pain. Nothing much helps & I'm afraid the feds will come in & cut my meds, because they are doing this in Phoenix. I used to go to the hospital & beg to be hooked up to stronger meds ( used to get Dilaudud or Fentanyl & some benzos) but i'm afraid, as the damn Opioid crisis ruined it for everyone one of us with legitimate, severe pain. Since I'm fused everywhere, my pain is from top of my neck down both legs, feet, all toes. I can only lay flat & typing on the computer, is absolutely impossible. Had trial of pump with Dilaudid but not sure if it helps, cause no real back pain, it's all horrendous nerve pain in lower extremities. & in my neck & upper back, from all my hardware. I was totally paralyzed with MRSA in my spinal cord. I recovered from that some what, because i was in Northern US & got fantastic care. Now have permanent suprapubic catheter, with drug resistant. & infections & get horrendous flares & no one will manage my steroids or wants to mess with me & they tell me just take steroids, not difficult etc Can't sleep, can't use my arms much... I'm depressed & have a PHD with remote therapy. She's great, but I'm so isolated as i can't go downstairs & go to senior fitness or go to the dining room etc... I try, but i also have a torn rotator cuff & need a new shoulder... feel like i have wasted last 25 yrs, & I'm thinking that I'm going to die soon. I'm on Medicare & Medicaid, so out of most money ( of course, this get's in the way of a lot of good doctors etc) Need help, but some god docs just say they feel sorry for me. Any suggestions? Would love to talk to other's with this horrible condition. Hate Arachnoiditis & i'm sorry for typos, but feel like i am going to pass out!!! Sorry i am whining again

Jump to this post

@laurenseavertson789
I too have arachnoiditis . My symptoms sound very, very similar to yours. They are in the same location..
Sitting for any length of time is absolutely impossible, and then standing, becomes impossible.
I too was in the medical field for 40 years and I’m absolutely disgusted with the lack of understanding that there is regarding this horrible disease.
I feel that we are pushed into spinal cord stimulation far too soon as our only alternative.
I am also trying to get someone to work with me and follow Dr tenants protocol as much as possible, but I am finding that that’s almost impossible.
No one even wants to look at the papers that I bring in.
I have been doing most of my own research and following a protocol as best as I know how.
I have however, joined some wonderful, wonderful wonderful Support groups on Facebook. I don’t know if you’ve looked into any of these, but they truly have been godsends for me. I have gotten lots of helpful information from fellow sufferers..
It is helpful to connect with people that know what we’re talking about and experience what we experience.
I am so sorry you have to go through what you’re going through. This is something I never thought I would be experiencing.
Mine was probably caused from surgeries that I had on my spine last year that should have been simple and got me out of the pain I was having then, instead it launched me into a condition that is far worse than what I was previously experiencing. Multiple epidurals on top of it I’m sure did not make things better, only made things worse.
Living with this is going to be the challenge of my lifetime. I am just one year in…. Only two months post official diagnosis, although I’ve been bringing this up now for a year… so I’ve got a long road ahead as well.
Good luck to you once again if you are on Facebook (The only reason I got on Facebook was to get involved in the support groups that I mentioned.) I would highly recommend getting involved in some of the arachnoiditis support groups that are out there.!!
Best,
Sheri

REPLY
Please sign in or register to post a reply.