What to expect after CSF leak repair surgery
I have posted the following information about what to expect after surgery on a couple of threads, but wanted to make a stand alone post so that it might be easier for people to find.
First, a disclaimer. I'm not a doctor and you need to follow your doctor's advice if it differs from these recommendations. However, I struggled to find good information about what to expect before I went into surgery and I gleaned this info from a number of different sources: doctors, other patients, websites, etc.
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Mobility & self-care: Depending on the location of your surgery, it may be difficult to lift your arms to comb or wash your hair for several weeks after surgery. Assistance when bathing or the use of a removable shower head and shower seat might be helpful. Bring clothing to the hospital that is loose-fitting and easy to slip on without lifting your arms over your head in order to protect the surgical site. Slip-on shoes are recommended. An automatic toothbrush is helpful for the first few days after surgery. You might find it useful to purchase a grabber tool for use at home to pick up items without bending. Before surgery, it is a good idea to move frequently used items to waist level (kitchen items, clothing, etc.) to keep bending to a minimum.
Lifting & Activity Restrictions: Do not lift more than 5 pounds for the first month after surgery. Keep bending and twisting to a minimum and avoid any movements that cause stretching of the dura (see Cedars-Sinai link below). Activity should be restricted to walking only for the first month, followed by the addition of gentle aerobic exercise during the second month. As you increase your activity, It is normal for the muscles in your torso and back to be fatigued from compensating for those that were involved in the surgical site.
Pain: While each patient’s experience of pain is unique, you can expect to require narcotic pain medication during your hospital stay (2-4 nights or more). Similarly, after discharge, you may find that you require narcotic pain relief for an additional 1-2 weeks before tapering off to over-the-counter pain medications only. It is normal to experience pain getting in and out of bed and while rolling over in bed for several weeks after surgery.
Emotions and fatigue: It is normal to experience some emotional instability after surgery due to surgical trauma and the effects of general anesthesia, steroids and narcotic pain medications. You should also expect to be fatigued during the first few weeks after surgery as your body heals.
Returning to work: Depending on the occupation, some patients feel ready to return to work in two to three weeks. It is not unusual for patients to require up to six weeks of leave.
Residual leak symptoms: Expect to have residual symptoms for weeks or months post-surgery, with gradual improvement over time.
Physical Therapy Recommendations: Patients should be educated before discharge about movements and positions that cause stretching of the dura and should be avoided during the immediate post-surgical period. A visit with physical therapy staff prior to discharge should ensure that patients understand how to carry out self-care at home (including how to safely get into and out of bed, put on clothes and shoes, etc.) without compromising surgical healing. If your facility does not provide this information, you can find general guidelines in the Cedars-Sinai Physical Therapy presentation on sensible restrictions after surgery or patching: https://spinalcsfleak.org/wp-content/uploads/2017/10/2017-SIH-Freed-Sensible-physical-restrictions-after-patching-or-surgery.pdf
After initial healing has taken place (approximately six weeks after surgery), patients should begin rehabilitation with the guidance of a physical therapist who is familiar with spinal fluid leak repair surgeries. If your facility does not provide guidance for physical therapy, contact me and I can give you a copy as a sample.
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I hope this helps those of you who are facing surgery. I am happy to say that my surgery in August 2018 seems to have been successful (so far) and I'm thrilled to be working my way back up to full activity (even started running a couple weeks ago). Surgery has given me my life back and I'm so glad I took the leap and did it. I was so uncertain and scared beforehand, not knowing if they'd actually find the leak and be able to repair it. I hope I can help even one person face this with a little less fear.
Shared experience, not medical advice.