Post surgery issues; what to watch for?

[areles]

son's 2.8cm AN was removed three days ago at house by doctors schwartz and miller. (translab)

now that we're a bit further out, i have questions:

is it normal for him to be consistently reporting pain as a 10?  (a few times 9, twice 8, once 7 - all day every day otherwise, 10)

dizziness, and lots of nausea?

AND... he's been reporting consistent muscle spasms for the past twelve hours, in arms and legs.  says they aren't painful, they just won't let him rest, even after dilaudid.

we also had a csf scare earlier today; some fluid from nose, but the docs rushed in and hung him for six minutes, unable to duplicate, and are content to say it's residual from surgery.

getting a bit worried.  about cranial pressure, as well what these spasms mean.

[CHD63]

Hi areles .....

It is sometimes worse to be the caregiver, watching your loved one go through these kinds of agonies, and feeling helpless to do anything for them.

Although I did not personally continue to have level 10 pain like you are describing, reporting pain as a 10, 9, 8, 7 is completely subjective on the part of the patient.  It mainly gives the medical personnel a reading on how miserable a patient is feeling.  As for the dizziness, that is very normal.  I am rather surprised they have not been giving your son Zophran or Phenergan for the seemingly severe nausea.  Perhaps he cannot take either of those for other reasons.  I had both of those (at different times, of course) and they helped tremendously with the nausea.

As soon as he can get up and start walking more, the more quickly his remaining vestibular nerve will take over all of the job of two of them.  Most people do not want to get up and walk when everything is spinning or totally disorienting, but truthfully the more he walks, the better he will be.

I presume he (or you) has reported the muscle spasms to the nursing staff.  If not, be sure he does, as there may be something they can do to help with that.

Many thoughts and prayers.

Clarice

[LakeErie]

Part of the surgery is irrigation to clear the field at times. Post surgery the irrigation fluid may drain through the nose for a few days, that is normal. I had a nasal CSF leak and it will be continuous especially when bending over. The fluid itself can be examined to determine what it is. Most cases of nasal CSF leak respond to conservative measures according to my very experienced surgeon.

[LethaGriffin]

Hope he is doing better. I had extreme nausea for a few weeks. They ended up giving me oral medicine and a patch behind my ear that I changed every 3 days. I also had a lot of dizziness. It takes time for the body to adjust. It will get better in time. Prayers his way.

[areles]

it was indeed a csf leak.  instead of being released, he had a second surgery yesterday to repack and also close the ear canal.  seemed aggressive to me, and set his recovery back to nearly square one, but they seemed to feel it was better than a 'wait and see' approach.  so, that's what we did.   

and afterward, he developed issues he hadn't had before - now he's getting the tastebud thing, for instance. 

[tdlight]

Thoughts and prayers to you.  I have a 21 yr old son and can only imagine the stress.  Hopefully he is able to be discharged today and the change in scenery is uplifting.

Hang in there.

[JimGagnepain]

Three days is very early.  Are you still in the Los Angeles area?  My experience was that the House staff is very good at following up.  I stayed in LA for about 9 days, after the surgery.  Once I had my stitches removed, and left the area, I e-mailed facial pictures, weekly, to Doctor Wilkinson, along with anything that didn't seem normal.  He always responded, and was very encouraging.  Also, I would not hesitate to take pain pills for the first several days.  I eventually settled on Tylenol, as needed, after about 5 days.

[JimGagnepain]

How is your son now?  I reread your post, about the CSF leak.  That must have been traumatic, not just for him, but for you as well.  Is he out of intensive care?  I hope all is well now.  My prayers are with you.

[CHD63]

Hi areles .....

I am not a medical professional, but I do have some thoughts based on my experience and the experiences of others I know.

Following my first AN surgery, I had very pronounced double vision, which lasted for two or three weeks.  Following my second AN surgery, I had very mild facial weakness, which did not increase as your son has, but it lasted for several months.  The doctors were adamant that I use a lubrication in my eye every night until there was no sign of weakness.  Your son may need to keep his eye lubricated 24/7 until the weakness subsides.  You do not want corneal damage to his eye from it not closing properly.

My unprofessional opinion is ..... given he had the CSF set-back, he probably has increased swelling that could be pressing on the facial nerve temporarily (until the swelling goes down).  I am sure Dr Wilkinson will explain why additional steroids are not indicated in his case ..... or prescribe another round of them if he feels it would help.

I'm not quite sure why having an HMO prevents you from getting a message to Dr. Stefan ..... that does not make sense to me.    Dr. Stefan is not the only one who can prescribe what your son may need ..... especially if you have insurance problems preventing it.

Many thoughts and prayers.

Clarice

[JimGagnepain]

I hope the appointment with Dr. Wilkinson went well today.  When I went in to see Dr. Wilkinson, in late December, to get my stitches removed, he prescribed a 2nd round of steroids.  My facial nerve regression seems like it was similar to the way you describe your son's.  He also prescribed eye drops and lubricant (over the counter).

I also took weekly facial pictures (smile, pucker, loosely closed eye, and tightly closed eye), and sent them to Dr. Wilkinson weekly.  In this email, I also mentioned any other concerns/issues.  He wrote back within a day every time.  So don't feel like you're abandoned.   Open up that line of communication.  At one point, my wife and I noticed new stitches around the surgery area.  I thought they had missed some, and asked Wilkinson about this.  He said they were internal stitches, that had come to the surface, and he advised that it was OK to remove them.

This is a tough surgery, and it results in a long recovery.    It's going on 3 months for me, and I can still feel some stiffness in face.  The smile is back, but the eye still has some issues.  Hopefully, your son will heal quicker, since he's so much younger  Urge him to be patient, and measure the recovery time in weeks, not days.  Every day/week will be better.

One other item.  My situation improved dramatically, after getting off  the 2nd round of steroids.  I started sleeping much better, without the aid of sleeping pills, which I had to take while using the steroids.  My words to Dr Wilkinson at that point were, "I'm starting to feel more normal".

[JimGagnepain]

I don't think worrying is going to help your son.  If anything, it will probably stress him out more.  Is he using the breathing apparatus from Saint Vincent's?  Is he taking a lot of walks?  Vestibular Physical Therapy was very helpful to me.  My insurance didn't cover it, but it was still worth every penny.  The prescribed exercises actually made me feel better.  I would suggest encouraging your son to do all these things.  And of course sleep, sleep and more sleep...

[Cheryl R]

I would say that the chances of permanent paralysis is very unlikely.      There may be some swelling present.    In most cases it takes the nerve being severed or paralysis which showed up immediately past surgery that had caused severe damage to the nerve to it be a permanent issue.        It has to be hard to watch and wonder when it is your child who is going through this.     Recovery time from this whole surgery can take longer than one thinks even when there have been  has been a leak or other problem also.         It is hard not to panic but one has to try and take it easy and see how it does progress.        Make sure a good heavy gel or tube gel is being used in the eye to prevent dryness.       
                 Keep us posted but try to take it easy.       Keep us posted  and know we are here too.
                                                               Cheryl R

[CHD63]

Hi Cityview .....

I just am noticing that her last posts are missing on here, as well.  Although we have the ability to remove posts that are deemed inappropriate, we rarely do so and did not remove any of hers.  Therefore, she must have done so.

I hope and pray all is well with her and her son.

Clarice

[areles]

I don't think worrying is going to help your son.  If anything, it will probably stress him out more.  Is he using the breathing apparatus from Saint Vincent's?  Is he taking a lot of walks?  Vestibular Physical Therapy was very helpful to me.  My insurance didn't cover it, but it was still worth every penny.  The prescribed exercises actually made me feel better.  I would suggest encouraging your son to do all these things.  And of course sleep, sleep and more sleep...

hi, jim.  no, you're absolutely right re the worrying; i do tend to keep that from him.  last night i had a rough go, but he wasn't privy to it.  yes, he's doing his breathing exercises and walking (though frankly, not as much as i'd like - but he's doing them.  i think apart from the latest issue he's feeling pretty good (and no real balance issues; he doesn't even have much trouble in the dark, surprisingly), so has gotten lazy about it.  we had a talk about it a couple of days ago, and he's doing so with more regularity. he doesn't particularly enjoy the breathing exercises; he says they make him dizzy, which i've told him is probably normal and is something he's going to have to fight through before it gets better.  (correct me if i'm wrong.)

with respect to the delayed facial weakness, the docs called this morning and prescribed a course of famvir and prednisone due to the left eye's reduced function.  my husband is now [slightly] concerned this will delay the healing process, ultimately (as in, if it helps with the current situation, will it start all over again, and be worse, afterward), but we won't have a chance to ask about this until next week, and i suppose that horse is out of the barn at this point.

[Cheryl R]

I would say that taking the new meds prescribed will help what inflammation and swelling that might be there but no  I have never heard of it making things start all over.     The nerves heal at a very slow rate and the meds just might help it  but to reverse anything would be unusual.                  If his balance is good then don't over push walking, just normal walking should be ok.      He knows how he is feeling and will try to help make it better if he thinks he needs it.     Also does he have chronic lung issues that he would still need to use the breathing tube?    By now he shouldn't need to unless he has a chronic lung problem.    Tell him to make sure and cough every so often,should do it.            This is from a  retired nurse who has NF2 and been thru 4 surgeries including a leak so know more about AN than ever wanted to.
     His nerves will heal on their own time no matter how much a person is told to do this and keep doing that.   The nerves don't always listen to us!    I know that too well!                   Cheryl R