Exploring Intrathecal Pain Pump Options
As a 46-year-old man grappling with increasingly severe chronic pancreatitis, I've found myself facing the possibility of undergoing a rare surgical procedure known as a Total Pancreatectomy with Islet Autotransplantation (TPIAP). Unfortunately, only a limited number of hospitals possess the necessary resources to perform this complicated surgery, and I am currently trying to connect with the Cleveland Clinic. Within the pancreatitis support community, I have heard overwhelmingly positive feedback about the procedure. However, I am also aware that navigating insurance approval can be challenging, which is why I am eager to explore the potential out-of-pocket costs involved. Lately, I have been visiting the emergency room approximately every four weeks. Just last Thursday, I was released after an eleven-day stay where the primary “treatment” consisted of keeping my digestive system at rest (NPO) and managing my comfort with antiemetics and pain relief until I was ready to resume eating and could be discharged. My current pain management regimen includes a fentanyl patch (75 mcg every 72 hours) along with oxycodone dosed at 10 mg as needed, up to six times daily. Additionally, I take alprazolam (2 mg twice daily), Creon (36,000 units—one capsule with snacks and two with meals), and ambien (10 mg occasionally for sleep). For hormone management, I receive testosterone injections (100 mg IM every two weeks). I also use Spravato intranasally twice weekly for depression, which is being applied off-label for pain management. Recently, I underwent a cortisol stimulation test involving a series of blood draws coupled with an injection. My endocrinologist suspects I might have a condition known as empty sella. Furthermore, I take 225 mcg of unithroid daily upon waking and 25 mg of amitriptyline each night to enhance the effects of my pain medications. Since I began using the fentanyl patches, I have noticed a significant improvement in my overall quality of life. Although they do not completely eliminate the pain, my pain scores, which I meticulously track, have decreased from a distressing 9 or 10 down to an average of around 4. I am unfamiliar with pain pumps and would like to know if there are any risks I should be aware of before considering this option. Lastly, it’s essential to mention that my pancreatitis stemmed from excessive drinking in my college years. I experienced my first acute episode at 18, and despite warnings to cease drinking, I naively dismissed the advice, believing it was unjust and that I was just enjoying myself. If only I could impart some wisdom to my younger self! I fully acknowledge that this situation is the result of my own choices. My main concern now is whether the advantages of installing an intrathecal pain pump justify the move, especially since I am finally experiencing some relief with the patches. I would greatly appreciate any thoughts or insights on this matter.
Answers (1)
8/12/2025, 4:11:04 AM
OpenHealth AI
Thank you for sharing your situation. It sounds like you're navigating a complex and challenging path with your chronic pancreatitis and pain management. Let's break down the potential options and considerations regarding intrathecal pain pumps, as well as the risks involved.
Key Points:
- Intrathecal Pain Pumps (IPPs) are designed to deliver pain relief directly to the spinal fluid, potentially providing better pain control at lower doses compared to oral medications.
- Risks Associated with IPPs may include infection, catheter-related complications, and the need for device maintenance or replacement.
- Weighing Benefits vs. Risks: Consider your current quality of life with the fentanyl patches and whether the potential benefits justify the risks and changes that would come with an IPP.
Explanation:
Intrathecal pain pumps could potentially offer more consistent and effective pain control, especially since you're currently on a regimen that is only partially relieving your pain. By delivering medication directly to the spinal fluid, they may help reduce the overall need for systemic opioids, which could also minimize related side effects.
However, the introduction of an intrathecal pump is a significant step that comes with certain risks. These include:
- Infection: Any surgical procedure carries the risk of infection, and this is especially pertinent since the pump will be implanted under your skin.
- Catheter Problems: The catheter delivering the medication can become dislodged, blocked, or lead to complications.
- Medication Effects: The medication used in the pump differs from oral or patch formulations; therefore, you may need adjustments based on your body's response.
Next Steps:
- Research and Consultation: Speak with a pain management specialist or a surgeon experienced in intrathecal pumps. They can provide detailed information about the procedure, expected outcomes, and personal suitability.
- Consider Your Current Management: Since you've noted an improvement with fentanyl patches, assess how critical the need for a pump is based on your current pain relief and quality of life.
- Insurance and Financial Considerations: Investigate the specifics of your insurance coverage for the pumps and any associated costs. Speaking with the hospital's financial department can provide clarity on out-of-pocket expenses.
- Monitor Symptoms Closely: Keep tracking your pain levels and any side effects you are experiencing with your current regimen. This information will be valuable for discussions with your healthcare providers.
It's commendable that you are reflecting on your past choices and focusing on moving forward positively. Each step you take in managing your health is important, and I encourage you to continue advocating for what feels right for you. Please reach out if you have further questions or need additional information.
Related Questions
Struggling with Bleeding and Pain Since Christmas
I'm a 27-year-old woman from the UK, and I've reached a point of exasperation. I'm reaching out because I hope someone can provide insight or guidance on what I should discuss with my doctors. Please excuse any grammar or spelling errors as I have dyslexia. I've been diagnosed with endometriosis and underwent surgery in 2022 for confirmation of that diagnosis. On December 15th, I had my birth control implant removed after nearly two years. During that period, I experienced severe menstrual cramps and PMS. My GP started me on Drospirenone 3mg and Estetrol 14.2mg COCP in October to alleviate these symptoms and suppress my periods, which provided some relief. Prior to this situation, I occasionally dealt with flare-ups that typically lasted a few days or up to a week. To help manage the discomfort, I have been prescribed Duloxetine at a dosage of 90mg. I had an ultrasound earlier this summer, and the results came back normal. Currently, I am awaiting an MRI. Last year, my smear test results were also clear. After the removal of my implant in December, I began bleeding on Christmas Eve. Initially, I could manage with just a panty liner, but over the next few weeks, the bleeding intensified, requiring the use of pads due to increased blood flow and blood clots. Given my history with endometriosis, pain isn't unfamiliar to me; my average pain level is around a 4, but it has recently escalated to 7 or 8. In the past couple of weeks, the discomfort has worsened. My job demands physical activity, and bending over now causes pain in my back and legs. Additionally, I experience discomfort when my bladder fills, and urination is painful, although it doesn't feel like a urinary tract infection. I've also been waking up at night to use the restroom. My doctor performed a urine dip test that showed no signs of infection, though there was blood in my urine, which he indicated was to be expected. Recently, my GP prescribed Tranexamic acid 500mg and Mefenamic acid 500mg, which helped with the blood clots, but I'm still experiencing bleeding and significant pain. I've been diligent about taking my medication, treating it like a strict regimen. I returned to the GP, who referred me for another ultrasound and advised me to go to A&E if the pain worsens. I've been resting as much as possible while still trying to maintain some level of activity, but it hasn't provided much relief. Any assistance or advice would be immensely appreciated! Thank you!
Normal MRI and EMG Reveal Nerve Slowdown
Greetings, I’m a 23-year-old female seeking guidance about some health issues I’ve been experiencing. Recently, I've noticed weakness in both my hand and arm, particularly in my dominant hand where grip strength has been notably diminished. After undergoing an EMG, the results indicated that my nerves are exhibiting a slowdown. However, my MRI results were unremarkable. To address some swelling I experienced, I was prescribed a course of steroids (4mg for a few months), which alleviated some of the issues, yet I still experience residual swelling in my hand. Often, my hand feels cold, and I notice a popping sensation when I move my fingers. Despite these sensations, I do not have any numbness or tingling, and the swelling appears sporadic. The pain I endure is quite severe, described as a hammering sensation throughout my hand. On occasion, I take ibuprofen (600mg) for relief, but it proves to be somewhat ineffective. My wrist itself seems fine, but my orthopedic specialist is considering a diagnosis of carpal tunnel syndrome (CTS), even though my symptoms don’t align with typical CTS indicators. I would greatly appreciate any advice or insights you may offer!
Experiencing Unusual Sensitivity to Paracetamol
Hello, Reddit community! I'm a newcomer here, so please bear with me as I navigate this platform as well as the rules. I appreciate your understanding regarding my writing skills. I find myself in a situation that lacks sufficient information online, and I'm reaching out for insights from others. Currently, I have reasons to believe that I might be experiencing a unique sensitivity to paracetamol, and I’d like to share my timeline regarding this matter. Throughout my life, I generally had no issues with paracetamol. I used various brands multiple times and felt fine. However, starting in the fourth grade, I began to experience difficulties with it. My initial problems were respiratory-related, but soon they also affected my gastrointestinal system. I haven't had any formal testing yet, but I can safely use other pain relievers like NSAIDs without any adverse effects. Initially, I tolerated paracetamol relatively well; my early symptoms seemed like common side effects. Unfortunately, it escalated to severe reactions, including vomiting, tightening of the throat, blood in my mucus, and shortness of breath. In my confusion, I thought limiting my dosage could help, which it did temporarily, but eventually even the reduced amounts failed to be effective. I experimented with syrup formulations that contain less paracetamol or where it isn't the primary ingredient, and found those to be more manageable. Recently, however, even those have become problematic, making it necessary for me to seek alternatives to paracetamol, as it has become increasingly intolerable. Through my research, I discovered that such reactions often stem from cross-sensitivity to other medications or from preexisting respiratory conditions. I lack a history of asthma or other respiratory issues, so I’m inclined to dismiss that possibility, although I remain uncertain. Moreover, I have no known allergies, which adds to my confusion since my reactions only occur with this one particular medication while all others seem fine. It is difficult for me to process this change, especially since I used to have no issues with paracetamol. It is widely available and generally considered safe, so I struggle to understand the source of my suffering. Many people insist that these reactions are normal side effects, leading me to question whether I am overreacting. The immediacy of my reactions intensifies my concern; I don’t even need to swallow the medication completely before I notice my throat constricting, increased mucus production, and shortly thereafter, some blood in my mucus along with persistent coughing. This pattern has become consistent, whereas it used to depend on the dosage. Now, regardless of how much I take, the same symptoms occur. I’ve tried to dismiss it, not wanting to worry my parents or seek medical attention for a dosage safety test, fearing I’ve already pushed my body too much. However, I am considering discussing my concerns with my mother since she is increasingly worried about my use of this medication. I’m not seeking a diagnosis or medical advice—I understand I should probably consult a professional. I’m just interested in knowing if anyone else has faced similar experiences, as the confusion grows. What I once assumed were normal side effects now seem to signify something more concerning.
Chronic Hypersomnia Since Adolescence: A Seeking Path for Answers
I am a 30-year-old white male, standing 5 feet 11 inches tall and weighing 160 pounds, residing in the United States. **Current Medications:** - Adderall XR 40 mg - Sunosi 150 mg - Lisinopril 40 mg - Atenolol 25 mg - Tolvaptan 60 mg **Medical Background:** - Autosomal Dominant Polycystic Kidney Disease (ADPKD) at stage 2 (eGFR 67) - Obstructive Sleep Apnea (utilizing CPAP machine since July 2024) - Complex Post-Traumatic Stress Disorder (CPTSD) **Symptoms Experienced:** - Persistent and overwhelming sleepiness—more than just fatigue—accompanied by a heavy feeling in my face and chest; I struggle to keep my eyes open and often feel as if I am burdened. - I sleep for 10 to 14 hours every night, supplemented by involuntary naps lasting 1 to 2 hours multiple times throughout the day. - None of my sleep feels restorative, leading to a groggy, hangover-like state upon waking. - Cognitive challenges including a lack of focus, forgetfulness, and trouble retrieving words, which have grown more pronounced over the last four years. - Activities as simple as showering or cooking now feel like moving through molasses. - I experience low physical endurance and lengthy recovery times, even though I previously maintained a regular exercise routine. My late father exhibited similar symptoms with the addition of seizures he associated with alcoholism, although he was never assessed medically. I, on the other hand, do not have any alcohol or addiction issues. **Specialist Consultations:** - **Sleep Specialist:** A Multiple Sleep Latency Test (MSLT) ruled out narcolepsy with no Sleep Onset REM Periods (SOREMs) and a 12-minute latency. I comply with CPAP therapy for an average of eight hours each night, but there has been no alleviation of my symptoms. Testing revealed no periodic limb movement disorders, alpha-delta intrusions, or unexplained nighttime arousals. - **Nephrologist:** Symptoms are considered unlikely to stem from my current stage of ADPKD. Tests show I’m not anemic, with standard iron levels. - **Rheumatologist:** An ANA titer of 1:320 with a speckled and nucleolar pattern appears elevated; however, all specific autoimmune tests returned negative. Monitoring was suggested without a clear diagnosis provided. - **Psychiatrist:** It was determined that my symptoms do not seem to be connected to mental health issues. My therapist has also validated in a letter that my condition is unrelated to psychological factors. - **Miscellaneous Findings:** An arachnoid cyst was detected in my brain. My white blood cell count is borderline low and my red blood cell count alternates between normal and low realms. Testosterone levels are within the normal range, though morning cortisol is slightly elevated. Normetanephrine is elevated at 2.15 nmol/L, while metanephrine remains normal at 0.27 nmol/L. Both Vitamin D and B12 levels are adequate. Tests for STIs returned negative results. **Current Situation:** I am currently on disability, unable to work even in part-time capacities and can no longer engage in exercise, finding myself nearly confined to my home. I feel as though I am being sent from one specialist to another without gaining clarity on my condition. What avenues should I explore next? Which type of medical professional might offer further insight? I'm beginning to doubt my own experiences, pondering if I am merely being lazy or overly sensitive.
Chronic Foot Pain: Seeking Insights on Possible Causes
I'm reaching out to gather thoughts on a perplexing issue I'm facing. Since my first pregnancy back in 2020, I've been dealing with intense foot pain that appears unpredictably. It all started when I was about seven months along while working long shifts in a busy kitchen, four days a week, for eight hours each day. At the time, I dismissed the discomfort as something typical for pregnancy, but it fortunately subsided about six months after giving birth to my first child. Fast forward to late 2024, when I became pregnant with my second child. By now, I had transitioned to being a stay-at-home mother, with none of the rigorous demands of my previous job. However, around three months into this new pregnancy, the foot pain reemerged and has persisted ever since. My youngest is turning two this month, which helps frame this timeline. The pain has oscillated between being severe and manageable, but the previous six months have marked a significant decline into debilitating territory. When I am at rest, I feel sharp pains in my metatarsals that radiate up to my knees. To alleviate some discomfort, I’ve been altering my walking style to shift weight more onto my heels instead of the balls of my feet. However, this adjustment has introduced a new level of discomfort in my heels. Ironically, the only relief I find is while walking. Nonetheless, excessive walking—even something as simple as taking my oldest to school for a brief ten-minute journey—leaves me nearly immobilized the following day. Currently, I’m on a regimen of 50 mg of APO-Diclofenac DR, taken twice daily, yet I’ve found no relief. Previously, I also tried 500 mg of naproxen twice a day without any positive outcomes. I've experimented with various footwear, but none have alleviated the pain. My primary care physician has arranged for bilateral x-rays and blood tests to check for conditions like gout and markers for osteoarthritis and rheumatoid arthritis, among other things. So far, all tests have returned normal. There have been occasions where I’ve had to keep my oldest child at home from school simply because I’m unable to walk even a short distance, such as the fifty steps from my bedroom to the kitchen. Standing causes distress, and even elevating my feet while resting feels unbearable. Additionally, any gentle touch to my feet triggers intense pain that shoots up my shins. The only feedback I’ve received from my doctor so far is that it likely stems from inflammation, along with a recommendation to expedite weight loss. I had a chiropractor assess my condition, and they noted that I am hypermobile, but I’m unsure how significant that could be to my situation. If you have any questions for clarification, I’d be more than willing to respond. I’m enduring considerable pain and would greatly appreciate any suggestions on possible avenues for finding relief.