I have had total loss of bowel control with my Severe Adhesive Arachno

@laurenseavertson
I am so sorry to hear of your suffering and struggles! I deal with chronic spine pain (had 3 prior surgeries) and some permanent spinal cord injury.

Are you working with a pain management clinic for treatment options? Are you regularly seeing a neurosurgeon and neurologist to keep an eye on your spine/central and peripheral nervous systems? I’m not sure how much a neurologist will help other than test for peripheral neuropathy (EMG/nerve conduction studies), small fiber neuropathy (skin punch biopsy), do brain MRI to rule out certain conditions, prescribe medications (many with terrible side effects), etc. I haven’t had much success with neurologists beyond testing, testing and more testing with no real treatment options that help.

Have you ever taken Cymbalta/duloxetine for nerve pain? Have you taken gabapentin or Lyrica? What other medications have you tried? Are you seeing a psychologist specializing in patients with chronic pain? Are you doing regular physical therapy?

Did you do anything in particular that caused the loss of bowel control? Is your cauda equina affected by adhesions and have you had any recommendations for surgery to deal with the adhesions?

Hi. I have arachnoiditis but not to the degree of bowel/bladder incontinence. I take Indomethacin and it does help. I would encourage you to ask your doctor for this drug. It is part of Dr Forrest Tenant's protocol.

Thanks for reply. I ama retired RN, over 40 years. I am Medicare & Medicaid. I have not been able to get anyone to even look at Dr Tennant's protocols. You have no idea, the lengths i've gone. I am broke....cannot pay cash & inflammation so severe, cant sit up, barely move. With hardware from C3 thru sacrum. I'm not able to do most everything...Feels like all my hardware is inflamed, i don't bend...( used to be an avid gym rat. Tried to avoid getting this bad. They just want to dump me into a nursing home.. Hospital told me pain is not their problem. Tried to get off the Decadron, but pain so severe. Only thing hospital cared about, was removing my order for IV pain control. They were basically horrible. I did not keep asking for stuff and told them this temporary... See a neurology PA this AM, Not optimistic a

Impossible to get appointments here. Current neurologist, very nice. But he keeps saying there is no treatment except steroids. I was bringing Dr Tennant's hand outs Most sleep i've gotten is 3 hours & can't nap I am not a surgical candidate,..was at the Barrows. I have gabapentin & have been on other drugs, for neuropathy. I am disoriented from lack sleep. I am all alone. Have part time caregiver...but i asked for more. Can't even sit up. Cauda equina not affected. I don't drive & am now basically total mess. I asked for 5 valiums. DO not respond to regular muscle relaxants Barrows is worlds renowned. All they did was prescribe more & more of the wrong type of steroids. PT is coming, but the spasticity is so severe. I know not much they can do. Think i've got to address the severe inflammation. Don't mean to sound argumentative, but so exhausted....just trying to keep clean & avoid another drug resistant infection. I have a permanent suprapubic catheter, which keeps getting colonized. Medical situation, horrible here in AZ. been told that taking out hardware, is not going happen. Plus, CT myleogram, did not show much of anything. Hospital treated the UTI & got me an ambulatory referral for 6 months away. Pain management doesn't have much to offer, at my advanced state. Spending hours just trying to keep clean and not make UTI worse with contamination. Just wanted input on specifics to try control horrible inflammation. I have no life & am very depressed. Basically have lie on my back. Unable to even turn on my side, or sit up to do anything on the computer.... Not sure if PT can treat, unless this spasticity decreases. Lack of sleep is compounding things. PT in the hospital, said i need .to get where they can even try to move me I am kind of a pariah with all my hardware & a DX that no one will deal with Can't get an IV in, no veings left & looking at a pic line.

I will ask. I now think i'm one of the total bed bound messes, that Dr tennant described.. I don't want to live anymore. Disease is terrible, but the medical communities total lack of responsiveness. Sure if i cam into the hospital with cardiac disease or something , they wouldn't said That too complicated. Repeated requests for tapering from the Decadron, were denied. Told me to see the neurologist. Will look up Indomethacin Thank you

How long have you been continuously taking steroids? I have moderate arachnoiditis, not adhesive, but from what I know, steroids are a short term fix, not to be taken forever (correct me if I’m wrong). Taking long term steroids causes adrenal insufficiency, increases your risk of infection (especially with chronic colonization of your bladder and Supra-pubic catheter), behavior changes, weight gain, increased blood sugar and diabetes risk, atherosclerosis, osteoporosis, muscle wasting and weakness, stomach ulcers, cataracts, thinning of the skin, and insomnia Prednisone doses as low as 5-10 mg per day can cause all these things.

If you’ve been taking long term steroids, you shouldn’t stop them abruptly. It sounds like you know this.

Thanks for responding. I have seen multiple doctors. My PCP is now managing the steroids. No neuro appointments in AZ, 6 month wait. Have had at least 6 different PCP & not one willing to look at Dr Tennant's protocols. Over & over, just tell me nothing but Steroids. I even printed up Dr Tennent's information & asked them to please read . I have had adhesive Arachnoiditis for long time. Was in a wheelchair for 6 years. I wanted to walk again, so they put hardware (cages, screws etc) fused cervical thru sacrum ( have 4 levels that are not fused, total. I cannot sleep with my current Decadron usage. getting 3 hours a night & not able to nap. Very jittery. As of now, still having severe inflammation. Can feel every level of my hardware, feels on fire. While in the hospital, pain mgt was basically refused. Have taken Gabapentin, cannot handle Lyrica & my kidney function is squat. I am to sick to go anywhere. Yesterday, i did go see a different pain doctor, who read me the riot act. I had been with same pain management for over 12 years. They offer nothing, but pain pills. So i went to a different pain place & was basically accused of every illegal thing that one can do with prescription narcotics. I have never once, caused a problem with my narcotics. I was put in my place. Have been in & out of hospital for drug resistant UTI. Have permanent suprapubic, as i was paralyzed with MRSA & destroyed my bladder. So i have a neurogenic bladder Been told by Barrows, that i am not a surgical candidate & nothing but steroids for me. Another CT Myleogram last week, and nothing wrong with my spine, nothing to fix I am a senior & cannot take a lot of medications, as my kidney function (creatinine clearance is poor) Sorry for all the typos etc... I can't see straight, from lack of sleep Will try & find some psych help. I now poor & on Medicare & Medicaid. I am too sick to go anywhere, can't drive, so i take Uber. No one willing to help with pain issue. I am worried about getting C Diff, from antibiotics. I was begging for some IV pain relief, while hospitalized. An order was written & then rescinded over 8 times. They seem to think that pain Mgt was going to solve my problem. New pain doc, said maybe a caudal epidural (after some of this inflammation goes away). Arachnoiditis is all the way up to my arm pits & i am very Leary of any more needles in my spine. I am so depressed about the treatment i've received & the lousy attitudes from all the docs. Not one drop of empathy & kept telling me No IV pain meds. Started hallucinating from sleep deprivation. As a former RN, i am not naive about current state of health care today. I have never been part of the opioid crisis & no abuse what's' so ever. Please, as a warning, be careful about what you take. I was never informed that i could get so sick & end up totally disabled. All my education, has not helped me. Current PCP, is very nice & responsive I should clarify, that i've been on oral pain meds, for so long, that they don't work, any more & was begging for some Dilaudid while in the hospital. The pain was extreme. Doctors only concern, was no pain relief I didn't bring it up, but every hospitalist, but one, took order for the Dilaudid away. The Opioid crisis has destroyed pain treatment for some one like me I know there are others, receiving adequate pain management. The pain has only gotten so severe, with my recent flare. Had a hospitalist walk in & no introduction. He just informed me that he was taking order away for IV pain meds. He told me i had no reason to be in pain. He admitted to knowing nothing about AA & having never even treated it before.

@laurenseavertson
Have you had lidocaine IVs? Have they helped any?

This is what I learned about lidocaine IVs:

Lidocaine, particularly in intravenous (IV) form, is sometimes used in the management of chronic pain conditions, including adhesive arachnoiditis. Here’s a detailed look at its application, benefits, and considerations:

IV Lidocaine for Adhesive Arachnoiditis

ASPECT DETAILS
Mechanism of Action Lidocaine is a local anesthetic that works by blocking nerve signals in the body, providing pain relief.
Administration Administered intravenously, often in a controlled medical setting.
Indications Used for neuropathic pain, chronic pain syndromes, and sometimes for acute pain management.
Benefits - Rapid onset of action- Can provide significant pain relief- May reduce the need for opioids- Can improve overall function and quality of life.
Duration of Effect Effects can vary; some patients may experience relief for hours to days after administration.
Side Effects - Dizziness- Nausea- Allergic reactions- Cardiac issues (rare but serious).
Considerations - Requires monitoring during administration due to potential side effects.- Not all patients may respond positively.- May not be suitable for those with certain medical conditions (e.g., heart issues).

Can't take Indomethacin. Senior with poor Creatinine clearance. So not able to take most drugs My PCP managing steroids. Not responding well. Too much inflammation. Up to my arm pits, feel like i am being knifed in my spine...all the way up my thoracic hardware. Can't sit up, unable to turn in bed & stay. Yes, former RN, aware of pitfalls with them. Unable to take much else, due to poor kidney function Just started 2 weeks ago. I hate steroids, but feel like i am being knifed in my spine. Inflammation goes up to top of my thoracic spine (top of my thoracic hardware) I have severe insomnia & can't even rest. Know short term fix, but unable to take many drugs, due to poor Creatinine clearance. I am not responding to methyl prednisone & severe inflammation, is up to my arm pits ( thoracic hardware. Very depressed & unable to do most everything. I would like input from Dr Tennant, but unable to see straight, in so much pain. have Percocet 10 mg TID. Been on oral pain meds, for so long, i don't respond much. No one willing to work with me, No one who can help.. have a caregiver, but not enough hours. I am working on getting more. Pay, thru the state, is not too great. I am now pretty broke & on medicare & medicaid

Lauren
I am so sorry you are going through so much. I will pray for answers and your comfort.