u/FunnyAd3946

I have spina bifida occulta, a right-displaced tethered spinal cord at L1-L2, 16p11.2 deletion syndrome, dystonia possible, most likely, muscular dystrophy hypotonia, which is low muscle tone and a COL6A3 variant
My symptoms include severe back and neck pain,
thoracolumbar rotoscoliosis, leg weakness and spasms, bowel and bladder dysfunction with leakage and catheter use, and complete motor paralysis with severe bilateral CRPS in my hands. I have also had urinary infections
I'm scheduled for tethered-cord release on September 4, 2026, with L1-L2 laminectomies, filum section, and arachnoid-web lysis. The current plan is scoliosis fusion afterward, likely in December 2026 or March
2027. The goal is to treat the cord problem first, then the spinal deformity

So mine is September 4th is definitely complex. They just don’t know how complex depending on how severely tethered it is especially if there’s lesions and stuff like that and I wouldn’t be surprised there’s adhesions. And then not to mention, it’s already displaced to the right because the stupid neuromuscular Scoliosis and stupid spina Bifida Occulta ❤️❤️❤️❤️❤️❤️. Also, how much damage is permanent and will hopefully gain function back in my left hand or is that pretty much gone for good?

the cat account is also me. I’m Alex and I have two accounts because I didn’t know how to make my normal account but my main one is this one but I call it Who Dey21
Hi everyone. I’m looking for real recovery by that if you didn’t know already experiences from people who have had a tethered cord release, a long spinal fusion, or both. I’m not asking anyone to diagnose me. I’m trying to understand what recovery is actually like and what I should prepare for at home.

I have dystonia, hypotonia, muscle weakness and atrophy, neuromuscular scoliosis, kyphosis, and a confirmed tethered spinal cord. I’ve also had bladder and bowel problems, urinary retention, a Foley catheter, bladder spasms, UTIs, and pyelonephritis. I have major hand problems with paralysis, numbness, tingling, and pain, so I can’t grip or use my hands normally.

I had been having urinary retention, bowel leakage, spasms, pain, sensory changes, leg symptoms, and worsening function. After imaging, urodynamics, and specialist evaluations, the doctors found that the tethered cord and the spinal deformity are both contributing to the problems. They’ve told me both need to be addressed, but the tethered cord has to be released first.

This is not something I’m making up or trying to self-diagnose from the internet. I have the MRI reports, urodynamics results, medical records, diagnoses, and surgical plan. I’m leaving out private identifying information, but I can verify the details if needed. I’m mentioning that because this is a complicated situation and I don’t want people to think I’m just listing random symptoms.

My current plan is:

• September 4, 2026: tethered cord release with L1-L2 laminectomies and sectioning of the filum terminale
• Later: a long spinal fusion to treat the progressive scoliosis and kyphosis, hopefully around December 2026 or possibly March 2027 depending on how I recover

I know nobody can tell me exactly how my recovery will go, and I know surgery may not reverse every symptom. I’m mainly trying to get a realistic idea of what the process might be like, especially because I already have weakness, limited hand use, catheter care, and mobility issues.

For the tethered cord release:

• How long were you in the hospital?
• What was the first week at home like?
• Were you told to lie flat or limit sitting, bending, lifting, or twisting?
• How bad were the pain, headaches, spasms, or nerve symptoms?
• How soon could you walk, transfer, shower, use the bathroom, and get in and out of bed?
• Did your bladder or bowel symptoms change afterward?
• How long did it take before you felt somewhat normal again?

For the spinal fusion:

• How many levels were fused, and how long were you in the hospital?
• How much help did you need during the first few weeks?
• What helped with sleeping, bathing, toileting, dressing, and getting in and out of a car?
• Did you use a hospital bed, walker, shower chair, bedside commode, raised toilet seat, or other equipment?
• Did you go to inpatient rehab, use home health, or start PT and OT at home or as an outpatient?
• How long did the pain, fatigue, spasms, and nerve symptoms last?
• When could you sit comfortably and start doing normal activities again?
• Did you have a brace, and if so, how long did you wear it?

For anyone with bladder problems or a Foley catheter:

• How did you manage catheter care during recovery?
• Did you have more bladder spasms or leakage after surgery?
• What helped with hygiene, transfers, and preventing infections?
• What changes did your doctors want you to call about right away?

For anyone with weak or paralyzed hands:

• How did you handle medications, eating, phone use, dressing, and other daily tasks?
• Did you need someone with you full-time?
• What adaptive equipment or setup made the biggest difference?

For people who had both surgeries:

• How much time did you have between the tethered cord release and the fusion?
• What determined when you were ready for the second surgery?
• Was the recovery from one much different from the other?
• Did anything from the first surgery change the plan for the fusion?

What did you wish you had asked before surgery? What did you pack for the hospital? What did you wish you had waiting at home on the first day? And what part of recovery surprised you the most?

I’m nervous because I honestly don’t know what to expect, and I’m trying to prepare ahead of time instead of being blindsided. I’d really appreciate practical advice from anyone who has been through something similar.

tethered cord release followed by spinal fusion, what should i expect during recovery?

the cat account is also me. I’m Alex and I have two accounts because I didn’t know how to make my normal account but my main one is this one but I call it Who Dey21
Hi everyone. I’m looking for real recovery by that if you didn’t know already experiences from people who have had a tethered cord release, a long spinal fusion, or both. I’m not asking anyone to diagnose me. I’m trying to understand what recovery is actually like and what I should prepare for at home.

I have dystonia, hypotonia, muscle weakness and atrophy, neuromuscular scoliosis, kyphosis, and a confirmed tethered spinal cord. I’ve also had bladder and bowel problems, urinary retention, a Foley catheter, bladder spasms, UTIs, and pyelonephritis. I have major hand problems with paralysis, numbness, tingling, and pain, so I can’t grip or use my hands normally.

I had been having urinary retention, bowel leakage, spasms, pain, sensory changes, leg symptoms, and worsening function. After imaging, urodynamics, and specialist evaluations, the doctors found that the tethered cord and the spinal deformity are both contributing to the problems. They’ve told me both need to be addressed, but the tethered cord has to be released first.

This is not something I’m making up or trying to self-diagnose from the internet. I have the MRI reports, urodynamics results, medical records, diagnoses, and surgical plan. I’m leaving out private identifying information, but I can verify the details if needed. I’m mentioning that because this is a complicated situation and I don’t want people to think I’m just listing random symptoms.

My current plan is:

• September 4, 2026: tethered cord release with L1-L2 laminectomies and sectioning of the filum terminale
• Later: a long spinal fusion to treat the progressive scoliosis and kyphosis, hopefully around December 2026 or possibly March 2027 depending on how I recover

I know nobody can tell me exactly how my recovery will go, and I know surgery may not reverse every symptom. I’m mainly trying to get a realistic idea of what the process might be like, especially because I already have weakness, limited hand use, catheter care, and mobility issues.

For the tethered cord release:

• How long were you in the hospital?
• What was the first week at home like?
• Were you told to lie flat or limit sitting, bending, lifting, or twisting?
• How bad were the pain, headaches, spasms, or nerve symptoms?
• How soon could you walk, transfer, shower, use the bathroom, and get in and out of bed?
• Did your bladder or bowel symptoms change afterward?
• How long did it take before you felt somewhat normal again?

For the spinal fusion:

• How many levels were fused, and how long were you in the hospital?
• How much help did you need during the first few weeks?
• What helped with sleeping, bathing, toileting, dressing, and getting in and out of a car?
• Did you use a hospital bed, walker, shower chair, bedside commode, raised toilet seat, or other equipment?
• Did you go to inpatient rehab, use home health, or start PT and OT at home or as an outpatient?
• How long did the pain, fatigue, spasms, and nerve symptoms last?
• When could you sit comfortably and start doing normal activities again?
• Did you have a brace, and if so, how long did you wear it?

For anyone with bladder problems or a Foley catheter:

• How did you manage catheter care during recovery?
• Did you have more bladder spasms or leakage after surgery?
• What helped with hygiene, transfers, and preventing infections?
• What changes did your doctors want you to call about right away?

For anyone with weak or paralyzed hands:

• How did you handle medications, eating, phone use, dressing, and other daily tasks?
• Did you need someone with you full-time?
• What adaptive equipment or setup made the biggest difference?

For people who had both surgeries:

• How much time did you have between the tethered cord release and the fusion?
• What determined when you were ready for the second surgery?
• Was the recovery from one much different from the other?
• Did anything from the first surgery change the plan for the fusion?

What did you wish you had asked before surgery? What did you pack for the hospital? What did you wish you had waiting at home on the first day? And what part of recovery surprised you the most?

I’m nervous because I honestly don’t know what to expect, and I’m trying to prepare ahead of time instead of being blindsided. I’d really appreciate practical advice from anyone who has been through something similar.

the cat account is also me. I’m Alex and I have two accounts because I didn’t know how to make my normal account but my main one is this one but I call it Who Dey21
Hi everyone. I’m looking for real recovery by that if you didn’t know already experiences from people who have had a tethered cord release, a long spinal fusion, or both. I’m not asking anyone to diagnose me. I’m trying to understand what recovery is actually like and what I should prepare for at home.

I have dystonia, hypotonia, muscle weakness and atrophy, neuromuscular scoliosis, kyphosis, and a confirmed tethered spinal cord. I’ve also had bladder and bowel problems, urinary retention, a Foley catheter, bladder spasms, UTIs, and pyelonephritis. I have major hand problems with paralysis, numbness, tingling, and pain, so I can’t grip or use my hands normally.

I had been having urinary retention, bowel leakage, spasms, pain, sensory changes, leg symptoms, and worsening function. After imaging, urodynamics, and specialist evaluations, the doctors found that the tethered cord and the spinal deformity are both contributing to the problems. They’ve told me both need to be addressed, but the tethered cord has to be released first.

This is not something I’m making up or trying to self-diagnose from the internet. I have the MRI reports, urodynamics results, medical records, diagnoses, and surgical plan. I’m leaving out private identifying information, but I can verify the details if needed. I’m mentioning that because this is a complicated situation and I don’t want people to think I’m just listing random symptoms.

My current plan is:

• September 4, 2026: tethered cord release with L1-L2 laminectomies and sectioning of the filum terminale
• Later: a long spinal fusion to treat the progressive scoliosis and kyphosis, hopefully around December 2026 or possibly March 2027 depending on how I recover

I know nobody can tell me exactly how my recovery will go, and I know surgery may not reverse every symptom. I’m mainly trying to get a realistic idea of what the process might be like, especially because I already have weakness, limited hand use, catheter care, and mobility issues.

For the tethered cord release:

• How long were you in the hospital?
• What was the first week at home like?
• Were you told to lie flat or limit sitting, bending, lifting, or twisting?
• How bad were the pain, headaches, spasms, or nerve symptoms?
• How soon could you walk, transfer, shower, use the bathroom, and get in and out of bed?
• Did your bladder or bowel symptoms change afterward?
• How long did it take before you felt somewhat normal again?

For the spinal fusion:

• How many levels were fused, and how long were you in the hospital?
• How much help did you need during the first few weeks?
• What helped with sleeping, bathing, toileting, dressing, and getting in and out of a car?
• Did you use a hospital bed, walker, shower chair, bedside commode, raised toilet seat, or other equipment?
• Did you go to inpatient rehab, use home health, or start PT and OT at home or as an outpatient?
• How long did the pain, fatigue, spasms, and nerve symptoms last?
• When could you sit comfortably and start doing normal activities again?
• Did you have a brace, and if so, how long did you wear it?

For anyone with bladder problems or a Foley catheter:

• How did you manage catheter care during recovery?
• Did you have more bladder spasms or leakage after surgery?
• What helped with hygiene, transfers, and preventing infections?
• What changes did your doctors want you to call about right away?

For anyone with weak or paralyzed hands:

• How did you handle medications, eating, phone use, dressing, and other daily tasks?
• Did you need someone with you full-time?
• What adaptive equipment or setup made the biggest difference?

For people who had both surgeries:

• How much time did you have between the tethered cord release and the fusion?
• What determined when you were ready for the second surgery?
• Was the recovery from one much different from the other?
• Did anything from the first surgery change the plan for the fusion?

What did you wish you had asked before surgery? What did you pack for the hospital? What did you wish you had waiting at home on the first day? And what part of recovery surprised you the most?

I’m nervous because I honestly don’t know what to expect, and I’m trying to prepare ahead of time instead of being blindsided. I’d really appreciate practical advice from anyone who has been through something similar.

Surgery will be September 4 for tethered and the Web as well if there is a web the MRI confirmed in the scoliosis fusion will happen right after the tether cord is unreleased and they’ll fuse me from my stomach to my pelvis because that much rotation is only gonna cause more problems down the line which is already caused problems, but it’s gonna get even progressively worse in the curve. Will definitely even will definitely grow even more after everything is untethered and the fix the scoliosis 3 months after
The rotation quickly got out of control what is everything? I’m gonna need all that kind of stuff so I’m ready to start this journey.

Surgery will be September 4 for tethered and the Web as well if there is a web the MRI confirmed in the scoliosis fusion will happen right after the tether cord is unreleased and they’ll fuse me from my stomach to my pelvis because that much rotation is only gonna cause more problems down the line which is already caused problems, but it’s gonna get even progressively worse in the curve. Will definitely even will definitely grow even more after everything is untethered and the fix the scoliosis 3 months after

One of my biggest concerns is a possible tethered cord. I want this evaluated first with the right MRI imaging and any other testing the team thinks I need. I want to know whether it is actually present, whether it is pulling on or affecting my nerves, and what can be done if the MRI confirms it.

I’m 21 and have 16p11.2 deletion syndrome, neuromuscular scoliosis, a lumbarized S1, low muscle tone, and dystonia. My spine problems were missed for years and have gotten much worse in 2026.

My hand can become nearly paralyzed with severe burning pain, color changes, numbness, and trouble moving my fingers. I have videos of these episodes. I also have loss of temperature sensation in my pelvic area, bladder loss requiring a catheter, bowel incontinence, severe bladder spasms, and bleeding around the catheter during one episode.

I’m also dealing with worsening leg weakness, trouble walking, inability to turn my foot outward, severe chest and rib pain, dropping oxygen, and two bouts of pneumonia this year.

I’m concerned that a possible tethered cord, my cervical spine, lumbosacral area, and scoliosis may be contributing to nerve problems at multiple levels. I know the exact causes still need to be confirmed by reviewing all of my MRIs, standing x-rays, and other imaging and tests.

I’m seeing Dr. Virojanpa at UC and need a clear plan for what should be addressed first, what testing is needed, whether surgery should be staged, and how urgent it is. I want the tethered cord possibility, hand symptoms, bladder and bowel problems, breathing, and scoliosis evaluated together. I’m exhausted from living like this and need these symptoms taken seriously

I’m getting them out to 26th of May 4 teeth

Fainting (Syncope): This is the most critical symptom to report. Tell them you have fainted from the physical distress, which shows your body is under extreme strain [1, 2].
Acholous (Clay-Colored) Stool: This is physical proof that bile was blocked and not reaching your gut [1, 2].
Dark Orange/Brown Urine: This signals that bilirubin is backing up into your bloodstream [1, 2].
Severe "Stabbing" Pain: Describe the intense pain that goes from your abdomen straight through to your back and shoulder blades.
Bowel Movement Issues: Mention the cycle of chronic diarrhea followed by your bowels shutting down (no pooping).
Confirmed Gallstones: Remind them that your CT scan already verified the presence of stones [1].
Systemic "Sick" Feeling: Tell them you feel "terrible" with cold-like congestion and a cough, which can happen when the gallbladder is infected or inflamed.
Extreme Tenderness: Mention that your upper right side is "tender as hell" to the touch (especially after the puppy incident).
CRPS & Hardware: Tell them you have CRPS and staples/wedges in your foot so they can plan for a safe surgery and pain management. I’m pretty much wanting to evict this thing right now, but I can’t till June 3. Where they will take a look and decide what to do.

-
My Gallstones Are Ruining My Life and I Want This Gallbladder OUT”
I had 13 attacks in one day never knew that was possible
I’m at the point where I don’t even recognize my own body anymore. What started as “you have gallstones” has turned into a full‑blown nightmare that’s wrecking my stomach, my weight, my appetite, and honestly my sanity.

I’ve had multiple gallbladder attacks — the kind that make you freeze, curl up, and pray for it to stop. The pain hits in waves, the nausea comes out of nowhere, and every meal feels like a gamble I’m guaranteed to lose. I can’t eat normally. I can’t trust food. I can’t even predict what’s going to set it off anymore.

The weight loss has been brutal. I was already underweight, and now I’m dropping pounds like crazy. Last time I checked, I was twelve pounds under, and I’m pretty sure I’ve lost even more since then. I can’t keep anything in. I can’t absorb anything. My appetite is basically gone because eating feels like playing with fire.

And then there’s the diarrhea. Not normal diarrhea — I mean bile‑powered, explosive, zero‑warning liquid chaos. I’ve had to run to the bathroom six times in a single day. I’ve had accidents. I’ve had it leak into the front of my underwear. I’ve had moments where I’m scared to sit on the couch because I don’t trust my own body not to betray me. I’ve even avoided showering because I’m afraid I’ll have another wave mid‑shower and create a disaster I don’t have the strength to deal with.

My mom is watching all of this happen and she’s furious — not at me, but at the situation. She’s talking about calling the ER and telling them to evaluate me now because waiting until June 3 for a surgeon feels impossible. She sees me losing weight, running to the bathroom constantly, barely eating, and looking weaker every day. She’s right to be worried. I’m worried too.

I’m trying to laugh about it because humor is the only thing keeping me sane, but the truth is I’m miserable. I feel like I have to check myself every five minutes just to make sure I haven’t had another accident. My stomach feels like a bomb that could go off at any moment. I’m exhausted, hungry, scared, and so tired of living in the bathroom.

At this point, I just want this gallbladder OUT. I don’t care how. I don’t care when. I just want my life back. I want to eat again. I want to stop losing weight. I want to stop being afraid of my own digestive system. I want to stop having gallstones ruin every single day.

If anyone else has been through this level of chaos before getting their gallbladder removed, I’d love to hear how you handled it. Right now, I’m just trying to survive without turning my house into a crime scene.

There’s is some advice I need before surgery So basically, I’m a huge Cincinnati Bengals fan. I’ve been a Cincinnati Bengals fan my entire life. I’m a resident of Kentucky and for the first time ever I was able to get season tickets to my favorite team. I’ve been on the waitlist for 2 1/2 years yes and after my dad passed, I really know I need to make the best of it so my uncle wrote me a check to buy some tickets so now me and him can enjoy the game whenever we want. I know the Bengals are gonna be accommodating stuff, but do you think it’s doable anyway I have to get another surgery after I got the first reconstruction done because I was severe disability so I needed it done and I have to get the other one done next by July or August in the season starts in September which means I’m non-weight bearing all that time through the entire season is this doable or not❤️ because anyway the sports team means the world to me anyway the pillow is that you seen in that picture is the only thing I have left of my dad but yeah so I was looking for any advice if you guys I’m hoping you don’t say cancel because I wanted to do this my entire life❤️ basically any more tips to let me enjoy my season tickets like anything I should bring or am I pretty much set. That will be me again Ty for any help or advice since you been through so much

Ty so much for being in here with for me knee injures and problems led to mutiple surgeries ❤️❤️❤️❤️❤️ after i lost my dad you guys been the best support group by the way im Alex and im 21 and on the spectrum so if you noticed my post don’t make sense I was born with tons of disabilities and deformties ❤️❤️❤️❤️I love this community so much you helped me so much 🥹🥹🥹🥰 my mental health has never been better because of you

So basically, I’m a huge Cincinnati Bengals fan. I’ve been a Cincinnati Bengals fan my entire life. I’m a resident of Kentucky and for the first time ever I was able to get season tickets to my favorite team. I’ve been on the waitlist for 2 1/2 years yes and after my dad passed, I really know I need to make the best of it so my uncle wrote me a check to buy some tickets so now me and him can enjoy the game whenever we want. I know the Bengals are gonna be accommodating stuff, but do you think it’s doable anyway I have to get another surgery after I got the first reconstruction done because I was severe disability so I needed it done and I have to get the other one done next by July or August in the season starts in September which means I’m non-weight bearing all that time through the entire season ❤️ is this doable or not❤️ because anyway the sports team means the world to me anyway the pillow is that you seen in that picture is the only thing I have left of my dad but yeah so I was looking for any advice if you guys I’m hoping you don’t say cancel because I wanted to do this my entire life❤️ basically any more tips to let me enjoy my season tickets like anything I should bring or am I pretty much Been throught it once and I’m ready to get through it again

Another foot reconstruction surgery July or August for flat feet. What do you guys recommend tips wise? Already been through it one time.❤️