When you are disabled surgery is often required to keep your body healthy and to prevent any serious medical issues for some people. Not disabled people will need tons of surgeries but for some disabilities, there may be little to no surgeries that can be done to help improve your quality of life so you may need to stick to lifestyle changes. If you have Spina Bifida it will depend on what form you have because some of the milder forms will require less surgery than some of the more severe cases. I don’t know exactly how many surgeries I have had but I am guessing it’s around thirty because it gets to a point you stop counting! One thing I have observed through the many surgeries I have had is there is always something your doctor doesn’t tell you beforehand or downplays so you don’t worry get too anxious. I don’t think physicians intentionally are trying to give misleading information by not telling you certain things or downplaying how serious it is but genuinely don’t know because they only do the surgery and have never personally experienced what you are going through. Before you have surgery there are many things that could happen during your recovery that your doctor won’t warn you about so I am going to talk about what I have observed through the many surgeries I have had that my doctor told me anything about.
Physical therapy is truly a horrible experience- I did physical therapy a couple of years ago to strengthen my knee and didn’t mind it but actually looked forward to talking to my therapist. I had tons of great conversations with my therapist and considered her as a friend but physical therapy in a hospital not so much. Physical therapy after some surgeries like brain surgeries isn’t so bad whereas after abdominal ones it’s the absolute worst! I know it seems strange that brain surgeries are easier than abdominal ones because it seems like brain surgeries should be much harder but they truly cause more pain and are much worse! It might be slow when recovering from brain surgery but you can still move where with abdominal ones you can’t move as freely without help from your caregiver and being in extreme pain. When you are admitted into the hospital and had any surgery of significance before they will let you go home doctors often send physical therapy in, to make sure you can transfer safely but it doesn’t make this experience any less horrible. Whenever I am doing transfer for physical therapy after an abdominal I am almost always balling my eyes out even after taking some extra strength pain killers because it just hurts so much but I know if I refuse I will never be discharged. I never take visitors when I am doing physical therapy after surgery with the exception of my mom because it can get too overwhelming and not everyone can handle how I am but my mom is my voice for when I halfway shutdown and need someone to speak up for me.
You probably won’t be given enough pain meds- After a major surgery, you often will need pain medication like opioids to treat your pain because over the counter medication won’t be nearly as effective if at all. Doctors don’t like to prescribe opioids because they are afraid everyone will get addicted so hospital staff either tries to convince you natural remedies and/or Tylenol does miracles for pain or under prescribes pain medication if you absolutely insist that you need them as part of your pain management plan. I am all for natural remedies and as a matter of fact, I used them regularly to manage migraine pain but Tylenol isn’t going to cut it for severe pain after surgery and natural remedies often have little to no effect. The opioid crisis ties the hands of many great doctors preventing them from effectively treating their patient’s pain because they are only allowed to prescribe so much medication which is usually nowhere near close to what they would need. You will always have that one person that does get addicted to their medication and ruins it for the hundreds of thousands of people who don’t and take it responsibly but need it to manage their pain. When I had my last major surgery I was so lucky my pain didn’t get out of control because I don’t know what I would have done if around the clock ibuprofen didn’t work since I was only given two days of pain meds. I could have been prescribed such a low dose because my blood pressure dropped too low while I was in the hospital or that was all they were allowed to prescribe.
Doctors are often very wrong about hospital stays- My doctor occasionally nails the time frame of my hospital stay right on the head but not usually and I often am in the hospital much longer than I had anticipated. The last surgery I had my doctor told me I was going to be in the hospital overnight but since I have been through this before I knew that was probably wrong and it was because what do you know a seven-inch incision keeps you there a few extra days! Doctors’ expertise is performing the surgery and helping you heal from it but as far as knowing how long your hospital stay will be not so much because it’s not something you can accurately teach in medical school without having a personal experience since everyone will react so differently to pain. I always plan for a longer hospital stay because the time frame that my doctor tells me is usually totally wrong and much longer than I would have hoped. It’s always better to be overprepared than not prepared at all and have to send someone home to get more supplies.
They often downplay surgery recovery- If you are having a major surgery your doctor will not lie to you about what to expect and how the long recovery is expected to be but they certainly do downplay it by saying things like “it won’t be that bad and it’s nothing like you haven’t experienced before” so you’ll be fine. When your doctor is always telling everything is going to work out it can be difficult to tell when you should and shouldn’t worry about what your doctor is telling you. They do this not be misleading but because they want you to feel calm so you don’t make rash decisions like canceling a surgery at the last minute because you convinced yourself you don’t need it when you know in the back of your mind that you do. Minor procedures doctors are pretty accurate because there aren’t as many risks as there will be for an eight-hour procedure. There will always be anxiety before surgery and as long as you are reassuring while giving patients the facts so they take what you say seriously then they will be less inclined to cancel important medical procedures at the last minute because they can trust that you’ll take care of them.
You will go crazy or become depressed- If it only takes a few days to recover from surgery then you will probably be fine and won’t go crazy or become depressed but may benefit from the much-needed downtime that we often take for granted. Imagine having a surgery that required weeks of bed rest and all you could do during that time was watch tv because you didn’t have the strength to sit up or do much of anything else. That is what an abdominal surgery is like and until you have something like that you will never truly understand that watching TV 24/7 is not what it’s cracked up to be but actually can get kind of boring rather quickly and you run out of things to watch faster than you ever would have imagined when that’s all your doing. Within days you will want to jump out of bed and do anything except watch tv but it’s not always wise to do that if the pain is too high because you could risk adding extra stress to something that is trying to heal. When you are recovering from surgery you often have some visitors but the majority of the time you are sitting alone unable to do anything which in my experience a week in starts to drive you crazy and make you sad so make sure you are connecting with your friends and family to avoid depression.
Showering days afterward is unrealistic– It cracks me up every time I am discharged from the hospital after having major abdominal surgery and my doctor tells me by the way you should shower and do your bathroom routine tonight. Your kidding right? Sitting up after abdominal surgery is possible days after surgery but extremely painful and just sitting up to do a transfer to get into my car and then driving home is enough pain for one day so you pretty much dream on about me adding to that pain by showering or sitting on the toilet for an hour. I do take note of my physician’s instructions and do plan on following them but not that same day and it will probably be at least a day or two before I even entertain showering or doing my bathroom routine. Some more minor surgeries you might able to shower right afterward but for many of the abdominal surgeries, I have had I don’t shower as quickly as my physician thinks I do.
Bring your own supplies- Hospitals will always have the medical supplies you need but not always will they be as good as what you are used to. You can get supplies like catheters from the hospital but it will take twice as long and sometimes you have to keep calling to continue to get them. The catheters they bring often are not as good as my usual and are smaller than what I am used to which means my bladder will drainer much slower and take a lot longer to empty my bladder than it normally would. Bring your own supplies so you don’t have to deal with Central Supply in the hospital because it can be a pain to have to be stuck with supplies that don’t work as well.
A doctor’s expertise is performing the surgery and helping you heal from it but everything else not so much because many of these procedures are not ones they do but have not personally experienced so how could they have knowledge in these other areas? You can have all this knowledge from what you learn in medical school but some things you can’t learn from a textbook and have to be experienced to have knowledge in these areas. Doctors don’t intentionally try to give you misleading information but sometimes genuinely thought your hospital stay was only going to be overnight and it turned out to be a week but when it counts they are right! Sometimes doctors downplay a procedure so patients don’t get anxious or feel the urge to cancel an urgent medical procedure because they convinced themselves it wasn’t necessary when they knew in the back of their mind it was. Many people don’t do well with the thought of surgery so they will put something off as long as they possibly can and sometimes even if they know it’s urgent still won’t follow through. If doctors helped patients control their anxiety while also making sure they understand the facts then more people would feel more at ease before a medical procedure and less inclined to cancel because they will know everything is going to be okay and feel more relaxed. If you have had surgery what have you learned that your doctor hasn’t told you?