Steroids post-surgery

[cakulmom]

Wondering if standard protocol is to be put on steroids following surgery, and if so, for how long?

I am having horrible headaches, 1 week post-op.  They were going to put me on steroids, but when I told them I had avascular necrosis which would cause right hip to deteriorate more quickly (left is shot now), they opted not. 

But I'm wondering if I should insist on steroids if only to get rid of the headaches.  Narco every 4 hours not the best option, which is what I'm doing now. 

When, oh when, does the brain swelling go down?

[Cheryl R]

Every dr has their own protocol.  Some do IV steroids while in hospital and then none once dismissed unless having some type of need for them.             1 week post op is very soon post surgery and you need to tell your surgeon how bad you are.     It is not unreasonable to still take strong pain meds yet.      If they are not helping then you may need to be on a different pain med as some work better than others for various people.           Take some Miralax or senokot and also a stool softener.     Warm prune juice helps some.      Keep drinking lots of fluids.           The first couple weeks home can be hard and then it slowly gets better for most.        Don't over push yourself now as life will be more normal in time!               Keep letting us know how it is going.
                                                               Cheryl R

[leapyrtwins]

Karen -

like Cheryl said, different docs have different protocols.  I also think that whether you have steroids or not post op depends on what side-effects you encounter.

I had a dose of steroids post op because I had slight facial nerve damage, but in my case that's the only reason I had steroids.  The nerve damage cleared up a day or two post op, so I never had more steroids.

I didn't have headaches post op.  In fact, I was strangely pain free, except for a stiff neck from the position my head was in during 7 1/2 hours of surgery.

Jan

[cakulmom]

Thank you for telling me what I need to hear.  Support means everything.

[cakulmom]

I ended up in the local ER for 4 hours on Dec. 8 PM.  Fecal impaction.  It was horrible and that pain overshadowed the headaches.  None of the standard remedies had worked on the constipation and even the enema they gave me in the ER didn't work.  The cure was pure medieval torture.

I can't take steroids because of avascular necrosis; I can't take NSAIDs because of horrible stomach aches.  I'm  not going back to the narcotics.  So that leaves me with extra strength Tylenol, which take the edge off for a few hours, but the headache is relentless.  I see the resident physician on Monday. I want my money back; I didn't sign up for this.  I can't imagine how I'm ever going to go back to running my business.

[CHD63]

Oh my!  What a gruesome ordeal.  Surely there is something you can take and/or do for the headaches besides Tylenol or narcotics.  Have you tried ice packs when they hit?  20 minutes on, 20 minutes off, etc.  So sorry you are having to deal with this.  Watch your salt intake.  You could be retaining fluid from that.  It may seem counter-intuitive, but drinking plenty of water or weak non-caffeinated tea really helps keep your system flushed out and the digestive tract functioning more normally.

Remember, I am not a doctor, but these are things I found useful when I had migraine-type headaches years ago.  Fortunately I have not had to deal with them post-AN removal.

Many prayers.  Clarice

[jerseygirl]

I was told that brain swelling reaches its peak at 10 days post-op and then slowly goes down. I have to echo Cheryl here: steroid use is strictly up to the doctor. I had two surgeries, one in 1988 and another one in 2007. The first time I got steroids a day before surgery and for 10 days after, the second time I had steroids for 2 days. When I had consultations for the second surgery, I asked about steroids because I had such a horrible time with them previously and I heard everything from "I never use them because they create more problems than they solve" to "10 days standard, no arguments!".

I doubt steroids are an answer to your headache problem. I would absolutely report them to your doctor because it might be that you have increased intracranial pressure and need a lumbar drain or a shunt. Doctors do not get (or sometime care!) patients' level of pain, so be very vocal and not stoic in the least bit. Let them be as uncomfortable as you are.  Meanwhile, to decrease intracranial pressure and associated headaches (brain swelling tends to cause it), never put you head down and sleep on elevation, almost in a sitting position. This will promote  CSF drainage and decrease headaches.

Best of luck in your recovery and may all your troubles be behind you!

  Eve

[cakulmom]

Thanks, CHD63, I drink at least half gallon water/day.  Things are "moving" now and I intend to keep them that way.

Ended up in the ER AGAIN all day yesterday.  This time in the city hospital where I had my surgery.  A story for another day.  Suffice to say, it is understandable why my health care premiums are so high given the idiots who show up in the ER on Medicaid.  Anyway, neuro office wanted me there because headaches should have been gone (why check in through the ER??--waste of health care $$).  They finally took a CT scan--no intracranial pressure--doubled my Tylenol dose, put me on 3 days of steroids (60mg/day) and told me to apply some goop and to tape my eyelid shut at night.  That all gave me the first night's solid sleep I'd had in almost 2 weeks.  Facial weakness and eye thing slightly worse, and I plan to address that at my appointment on Monday.

I've decided I need to work really hard at lowering my expectations for recovery.  Lower expectations, less disappointment.  Brain surgery at 60 ain't a walk in the park.

[Mark241]

I remember taking steroids but not really for pain, It was really odd, voices sounded like everyone was on helium. When I was feeling the worse with pain, I would lay on my couch with my back slightly elevated like at a 30 degree angle, and incorporated some simple stretching exercises. I sure you feel better soon.

[sunfish]

I'm sorry to hear all your troubles.  It hasn't been a bad thing for me to lower my expectations with this AN problem.  Baby steps.  CK was no walk in the park, either.  My husband wound up in the ER once for internal problems, and medieval torture is a good description.  Take care!

[leapyrtwins]

Everyone's recovery is different; it's hard to predict what you'll encounter.

But you've certainly had your share of troubles    Hope things improve for you very soon.

Didn't your doc put you on a stool softener prior to you being released from the hospital?  In my doc's practice, it's standard procedure - especially for those who are put on steroids.

Jan

[cecile k]

I was on steroids post op, weaned off, then back on when facial weakness set in. Then weaned off slowly and it was AFTER I was off steroids completely that headaches started. This was nine years ago and still dealing with headaches.

cecile

[Captain Deb]

Me, too, Cecile, only 8 years.  I had my first whopping brainwreck 10 days post-op, the day after my last steroid.

Capt Deb

[lori67]

I was on IV steroids to minimize any brain swelling while in the hospital.  I was supposed to take the oral version for 7 days after my return home, but had to stop after 2 because it was doing a number of my blood sugar and I kept passing out!      I would guess that the IV stuff in the hospital was enough to keep things under control because stopping the oral steroids early was not a decision my doctors had to labor over for very long.

I would also imagine that such a short dose of steroids would not increase the severity of your avascular necrosis by much (I'm NOT a doctor, but I am a nurse), but I can understand with your already having one bum hip, not wanting to risk the other one.  I'm pretty sure if your doctors thought for a minute that you may have an issue with swelling, they'd put you on the steroids, as the benefits would definitely outweigh the risks.  I think your brain is a bit more important than your hips!   

I hope the headaches go away for good - and very soon!  You're right - brain surgery isn't a walk in the park, at any age, but at least you have lots of company on your walk!   

Lori

[JLR]

Have you tired Aleve.  I find that is the only otc med that works for me. A few years back I had sciatia. And it was awful. Aleve truly helped. But certainly check with your physician if it's' ok to take as I'm not sure of what other meds you might be on.  Im so sorry you are in such discomfort..just try to think positive thoughts...i.e.  today is slightly better than yesterday....and before you know it the week will pass and you will notice that you are on the mend. Here's to a Happy and Healthy New Year!  Joan  (Im 3 weeks post ck and also in my 60's and believe me it would all be alot easier if we were alot younger..but...look how much smarter we are