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patient education : 04115--Post-Operative Pituitary Surgery Discharge Instructions

Discharge instructions for care and follow-up after pituitary surgery.

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    POST-OPERATIVE PITUITARY DISCHARGE INSTRUCTIONS

     THE BASICS         

    • Most patients with pituitary tumors can have their tumor removed from inside their nose through an air-filled chamber called the sphenoid sinus. 
    • Because the surgery is done through the sphenoid sinus, it is referred to as a transsphenoidal approach.

    Due to the approach of the surgery, the sensitivity of the pituitary gland and  potential for opening of the membrane containing cerebrospinal fluid (CSF), there are many special things to know about your recovery after surgery:

    AFTER YOU GO HOME

    Questions/Concerns? CALL: 

    • Monday-Friday 8 am – 4:30 pm – call the Neuro-Endocrine office Dawn) at 434.982.3591 or 1.800.650.2650.
    • On nights and weekends:
      • Surgery questions - call 434.924.0000 and ask for the neurosurgery resident on call.
      • Hormone replacement questions - call 434.924.0000 and ask for the endocrine fellow on call (pager #1263). 

    General instructions:

    • It is normal to have blood-tinged or yellowish drainage from your nose for a few weeks.   
    • If the drainage is thick and green, associated with facial pain and fever, you may have a sinus infection.  Please call Dawn during the week or the neurosurgery resident on-call on nights, weekends and holidays.
    • If you had a spinal fluid leak during surgery, it was repaired during surgery. Even though the CSF leak was repaired during surgery, you are still at risk of developing a cerebrospinal fluid (CSF) leak after surgery. Most often, the CSF leak is apparent within the first 48 hours after surgery and is fixed before you go home. However, some patients will experience a CSF leak after going home. It is not uncommon for patients to have clear nasal drainage after using the Nasal Rinse.  However, this clear drainage should stop on its own.  A CSF leak generally continues.
      • If the nasal drainage is clear and thin and dripping like a faucet, please call Dawn during the week or the neurosurgery resident on call on nights, weekends and holidays. 
    • It is important to diagnose and treat a CSF leak after surgery to prevent you from developing a serious infection called meningitis. Patients with meningitis often will have a headache, sensitivity to bright lights, and neck stiffness (call meningismus).
    • Cerebrospinal fluid (or spinal fluid) looks like tap water; it is as thin and clear as water.
    • Do not lift anything greater than 10 lbs for the first 2 weeks after surgery and then nothing greater than 25 lbs for the following 4 weeks.
    • Allow 6 weeks to recover from this surgery. You will have restrictions for 6 weeks after surgery but may return to work earlier with restrictions if you would like.
    • Do not blow your nose for 6 weeks after surgery. Wiping is ok. 
    • If you develop the signs of a cold (sneezing and coughing), open your mouth when you cough or sneeze.  This reduces the pressure on your head.
    • You cannot submerge your head for 8 weeks (i.e. swimming). You can take a shower and put your head under the stream of water.
    • If you have a stiff neck (unable to touch your chin to your chest without severe pain), fever for any reason, clear dripping from your nose, nausea or vomiting, new visual problems (double vision, blurred vision), changing or worsening headaches, severe fatigue, or any other worsening symptoms, please call Dawn Monday – Friday 8:00 – 4:30 and the resident on call on nights, weekends and holidays at 434-924-0000.  You can ask for the Neurosurgery resident or the Neuroendocrine Fellow (pager 1263).

    Follow-up appointments:

    • We will set up a follow-up appointment for you where we will do a new MRI test, full blood work, and a visit with both the endocrinologist and the neurosurgeon all on the same day.
    • The results of your post-operative MRI will be discussed with you.  Your endocrinologist will follow-up with you to discuss the results of your blood work and any changes in medications if needed.
    • We will set up your next follow up visit at the time of your first follow-up.
    • You may need to see the ENT before your 8 week follow up appointments and will be given that appointment at discharge.

    ¨  If you were started on hydrocortisone during your hospital stay, do not take any for 48 hours before your follow-up appointment and none the morning of the appointment.  Bring the medication with you to the appointment and we will check your cortisol without the hydrocortisone in your system to see if you can stop taking this medicine.   Please call your endocrinologist with any questions.  

    ¨  If you had visual problems before surgery, please see your ophthalmologist 1 to 2 weeks before your return to our clinic to have formal visual field testing completed.  Bring these results with you to your appointment or have them faxed to our office at 434.924.5894.

    Fluid:

    If you did not develop diabetes insipidus while you were an inpatient, you will go home on a fluid restriction.  If you were diagnosed with diabetes insipidus or had diabetes insipidus before surgery and have been prescribed desmopressin, do not follow the fluid restriction. If you develop signs of diabetes insipidus (frequent urinating large amounts of urine) after you go home, stop the fluid restriction and call the pituitary office or the Endocrine Fellow on call.

    • For the first week after discharge (7 days), you should restrict your daily fluid intake to 1 liter or 34 ounces per 24 hour day.  This includes all fluids including jello, ice, soup, etc.
    • Please take your plastic cup you used to measure fluid intake while in the hospital home with you to use for measuring your fluids at home.

    Medications: (We do not endorse any specific products.)

    • Saline spray: This is an over-the-counter spray to help decrease nasal crusting.  Use this every hour you are awake for the first 2 weeks and then every 3-4 hours for the next 6 weeks.  Lean forward with your head bent down and spray into each nostril.  Let the spray fall back out.
    • NeilMed® Sinus Rinse: Follow the instructions on the package (mix packet with water and shake well) with the exception of blowing your nose.  You cannot blow your nose for 6 weeks following surgery.  Use the Neil Med Sinus Rinse three times per day for 2 weeks and then 2 times per day for 3 months.  This is in addition to your saline nasal spray. Please use sterile or distilled water.  You can also boil your home water for 5 minutes and then let it cool to body temperature.  For more information visit www.neilmed.com  Please clean your irrigation bottle one to two times per week.  You can run it through the dishwasher on the top rack or wash it in hot soapy water.
    • Afrin®: This is an over-the-counter spray to help decrease nasal congestion.  Use this twice a day for a total of 3 days starting with the day after surgery as day 1.  This medication can lead to excessive congestion if used for greater than 3 days so please throw this away after the 3rd day.  Lean forward with your head bent down and spray into each nostril and let the spray fall back out.
    • Ibuprofen (Motrin)/Acetaminophen (Tylenol):  These over-the-counter medications should be used to control mild to moderate pain.  Please follow instructions on the bottle for dosing.
    • Oxycodone:  This is a narcotic we give for a short usage after surgery for severe pain only.  Do not drive while using this medication.  You may take acetaminophen with this medication. If you have sleep apnea, we will not send you home with a narcotic prescription.
    • Colace:  This is an over-the-counter medication that helps soften bowel movements and is used once or twice a day.  If you are using narcotics please use this medication.  It is important not to strain while allowing the surgery site to heal, so if you are having issues with constipation please use this medication.

    Hormones and your pituitary operation:

    Your doctor may have told you that you were deficient in one or more pituitary hormones prior to your surgery.  You may already be taking replacement hormones.  These might include:

    • thyroid hormone
    • testosterone (men)
    • growth hormone
    • estrogen and/or progesterone (women)
    • hydrocortisone or prednisone
    • desmopressin/DDAVP (anti-diuretic hormone)
    • After pituitary surgery, some people will require hormone replacement with one or more of the above hormones.  We will discuss it with you.  

    There are three specific conditions that you need to know about before your follow up appointment:

    Diabetes insipidus (DI) - The pituitary gland does not make enough anti-diuretic hormone.  This hormone helps control your urination.  If you do not have enough, you will urinate excessively, including at night, and have a great thirst.  If you are getting up frequently at night to urinate (every hour or so), you may need anti-diuretic hormone replacement, in the form of desmopressin or DDAVP. 

    • NOTE:   patients who have had pituitary surgery frequently breathe through their mouths because of nasal congestion.  This leads to a dry mouth, and as you drink more, you will urinate more as well.  However, this does not mean that you have diabetes insipidus (where patients usually urinate almost every hour, including at night). 

    You will be given a “rescue” prescription for desmopressin at discharge.  Do not take this medication without talking to Dawn or one of the physicians.  Taking desmopressin when you do not have diabetes insipidus can cause your sodium level to drop which can be dangerous.

    Syndrome of Inappropriate Anti-Diuretic Hormone (SIADH) release. - The pituitary gland releases too much anti-diuretic hormone, typically 8-10 days after surgery.  Symptoms include feeling ill, headaches, feeling nauseated, and/or decreased appetite.  If you have any of these symptoms, call Dawn at 434-982-3591 or the Fellow on-call after hours, 434-924-0000, pager 1263 (Neuroendocrine Fellow).  

    • NOTE:  You will need to have your blood sodium level checked 7-10 days after surgery, as this can become dangerously low.  This condition is an emergency. Low sodium can be serious.

    Adrenal insufficiency - During your hospitalization at UVA you were evaluated for adrenal insufficiency.  This occurs when the pituitary gland cannot stimulate the adrenal glands to make cortisol, the body’s natural steroid.

    ¨  If your blood cortisol level was too low after your surgery, you were sent home with hydrocortisone.  You should take this as prescribed (twice daily) until the Monday evening before your Wednesday follow-up appointment. 

    • Do not take any hydrocortisone on Monday evening, Tuesday morning or evening, and none the morning of the appointment.  We will check your cortisol without the hydrocortisone in your system to see if you can stop taking this medicine. 
    • Bring your hydrocortisone with you.  You can begin taking it again as soon as you have had your blood drawn (while we wait for the results to come back).  Some patients (for example, those who were taking hydrocortisone before surgery), may not need to stop taking their hydrocortisone before their follow up appointment.  We will discuss this with you after your surgery

    ¨  If you are started on daily hydrocortisone, and you have a ‘sick day’ (nausea/vomiting, fevers, etc.), you will need to double your regular dose of hydrocortisone, as the body naturally increases its cortisol production when you are sick.  If you have any questions about whether or not you should increase your hydrocortisone dose, please call Dawn during the week and the Endocrine Fellow on-call nights and weekends.  

    ¨  If your cortisol level was normal after surgery, you do not need to take hydrocortisone.  However, some patients may become adrenally insufficient (and need hydrocortisone replacement) after they leave the hospital.

    • If you have headaches; are lightheaded when standing; have nausea, stomach pains, severe fatigue, and/or are vomiting, (flu-like symptoms) please call.  This is a medical emergency.
    • You will be given a “rescue” prescription for hydrocortisone when you are discharged.  Do not take this unless you are instructed to by one of the physicians or Dawn.

    If you have a nosebleed, that is a trickle and lasts less than 5 minutes, that is okay.  In very rare cases, patients can have heavy, constant, bright red nose bleeds.  If this happens, go to your nearest Emergency Dept. and call us on the way if possible. 

    THINGS YOU NEED TO DO AFTER SURGERY

    • Neil Med 3x/day for 2 weeks, then 2x/day for 3 months
    • Saline nasal spray – every hour you are awake for 2 weeks and then every 3-4 hours for 6 more weeks
    • Day 3 Stop Afrin nasal spray
    • Days 7-10: Blood draw for sodium level and sometimes cortisol
    • 3 weeks after discharge, if you are a Cushing’s patient, reduce your hydrocortisone from 40 mg in the am and 20 mg in the evening (5-6 pm) to 20 mg in the am and 10 mg  (5-6 pm)
    • 5-7 weeks after surgery: Visual field testing for patients with visual deficits before surgery
    • 8 weeks after surgery: Follow up visit with Dr. Jane and your endocrinologist with MRI prior to the Wednesday visit
      • If you were started on Hydrocortisone during your hospital stay, please do not take your Monday evening, Tuesday, or Wednesday morning Hydrocortisone.
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