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Misconceptions about recovery

I’m on day two of my teathered spinal cord surgery recovery, and it’s completely different from what I expected. I’ve never had surgery before this, and I assumed that the medication given in the hospital was supposed to completely eliminate the pain. I’m finding out now that it doesn’t. I also believed that it would only take two weeks for the incision to heal, and then I would be back at work. Again, wrong. The neurosurgeon said that with any spinal surgery, all your usual symptoms (my EDS, Mast cells, POTS, etc) flare up and nerve pain travels through your body to create new pathways. I am my own worst enemy here, I want to push myself, make my own meals, but I know future me will appreciate me taking it slow. A combination of strong pain killers, kombucha and ice packs is what’s keeping me going now, as I’m still waiting for those stool softeners to work. Who knew that you needed your back muscles to toilet yourself effectively? Or that walking would make you nauseous? I didn’t sign up for any of this…. My fellow zebras are being so kind with recovery advice, distractions, and support, and I couldn’t thank you guys enough. ❤️🙏 #EhlersDanlosSyndrome #SpinalSurgery #teatheredcord #Recovery #Surgery

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In Recovery From Surgery

I finally had my occult teathered spinal cord removed yesterday! After years of waiting for a diagnosis, and seemingly endless hoops to jump through before the operation, it’s finally over. They said it went really well, and said the cord was very tight, so it’s a good thing they removed it. Dr. Pang did an amazing job and really explained the whole process very well. No medical gaslighting here! When I got to the PACU I had to stay there for five hours because there was no bed for me, and that was my only complaint since it’s like pergatory down there. Spent one night in the hospital laying completely flat, not allowed to lift my head. This morning they rose the bed fifteen inches at a time every hour until I was upright, and then I practiced walking. On my way home now. Thank you all for your well wishes before surgery! Love my new Mighty community. #teatheredcord #SpinalSurgery #Surgery #Recovery

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Prescription anxiety

I had spine surgery on 3/3 (5 days ago) and I’m in a lot of pain. I expected this as I just had spine surgery 6/22/22 as well. I prepared for the worst and I hoped for the best. Here’s my question….I got a prescription for pain medication the day of my procedure which contained enough for 8 tabs a day spaced at every 4-6 hours, just like the prescription says. Here I am on day 5 with 8 tablets and I’m anxious…is the surgeon going to give me a refill , there’s no way people come off pain meds 5 days after spine surgery right?, am I crazy that I’ve calculated my dose’s exactly because I don’t want to experience the crazy pain that follows?.
Seriously, is there something wrong with that/me? I’ve never been an addict, but if pain was involved and pain medication was needed, I didn’t let anyone help me with that part. I’m the child of an addict, could be something there.
My bruising has only just begun and the swelling is horrific (ice is my friend). So my anxiety has kicked in because I’m scared to call the surgeons office and ask for a refill (to be called in tonight preferably so I don’t have to drive), docs don’t like to refill pain medication even for surgery relief. I’m so afraid to be in pain, but the anxiety of actually calling is getting the best of me right now. Ugh. Why? Just why? Why does my brain do this? I’m certainly not actively thinking these thoughts. I don’t understand why this has to be an issue for me. 😤😩🥴😵‍💫🙄🤥🫥🫤😳😔 #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #Anxiety #PanicDisorder #MoodDisorder #ObsessiveCompulsiveDisorder #AnxietyMedication #SpinalStenosis #MightyTogether #CheckInWithMe #CrohnsDisease #Fibromyalgia #BrainFog #BackPain #SpinalSurgery #ChronicPain

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Thoracic Spine Surgery

A little over a week ago, I had emergency surgery on my thoracic spine. I had a fusion and lamenectomy on T5-T9 and one disc removed. Prior to surgery, I lost the ability to walk and I had urinary/bowel issues.

Surgery on the thoracic spine is more rare than other areas and more complicated and risky. There wasn’t much choice in my case. I had posterior surgery.

It’s probably the toughest surgery I’ve ever had. My blood pressure dropped during surgery and my recovery has been good, but slow. I’m walking again with the aid of a walker and I still deal with neurogenic bowel and bladder issues, but there is hope that those will go away as nerves heal.

I’m hoping others who have had or are facing this surgery will find this post. I’m glad I had my surgery, but I never would have had it if I hadn’t gotten to the point of hearing paralysis. #SpinalCordInjury #SpinalFusion #SpinalSurgery #SpinalStenosis #spinal

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spinal surgery

not only did spinal surgery in some ways make me worse I woke up paralyzed in the knee down in my left leg they called it foot drop or drop foot whoops
#SpinalSurgery

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Is there an “unspoken code” in the Disability world not to complain abt disability? Is there pressure to conform To the social identity & empowerment

#Disability #PainAcceptance #Depression #SpinalSurgery #SpinalStenosis

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Need help! Friend is going to dr.  She had back surgery and is now having complications  What questions should she ask dr? Return to work/disability?

#SpinalSurgery

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If you suffer from daily chronic pain and do not use any form of prescribed medication, would you help me by participating on a short survey ?

I am writing a book “Joy in the Midst of Pain” about the different non-prescription methods some of us are using to cope with pain. So I would like to ask anyone in this group who suffers from daily chronic pain (of any form) and do not use any form of prescribed medication (does not include the occasional Advil, Tylenol etc) to help me by participating on a short survey questionnaire. Please note all participants will remain anonymous. If you or someone you know would be interested in being part of this book, or have questions, please contact me via message. I believe this book could be very helpful to many of us who suffer from pain or know someone who does. Thank you in advance for your willingness to be part of my book. #SpinalStenosis #chonicpain #SpinalFusion #SpinalSurgery #BackPain #Pain

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Does anyone else have problems with a doctor not wanting to refer you to a surgeon because they think you're too young for surgery?


#SpinalSurgery
I am 39 and I have two herniated discs. I started with just 1 herniation seven years ago and I have gotten steadily worse. I am in constant pain. I have had many spinal injections in both discs and other non-surgical treatments that do not help. My doctor tells me that I am too young to have surgery and that it would limit my mobility and that surgery is not guaranteed to stop the pain. He wants to try yet another spinal injection before going over surgical options ( like a SCS ).I am very frustrated as I am desperate for relief I would like to pursue othe surgical options and I do not care If I am less flexible. I am aware that it might not be a cure, but I would like to try. I feel like I'm getting the run around. He is not a surgeon and I feel like he just wants me to keep coming to him instead if referring me to a surgeon who might possibly be able to fix the problem or give me relief.

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