two steps forward , one back

[msmaggie]

Good Morning to all,

I haven't been posting much on my progress because, to be honest , it was all good!  Then a week ago (a month out of surgery) ,I simultaneously got a crashing headache and a big goose egg at the incision site.  It happened in the late afternoon and I was pretty scared and pretty miserable.  I've seen a lot of posts about headaches and know they happen frequently as a result of surgery, but mistakenly thought I had bypassed all of that.  I was even going back to school, at least half days, this coming week.    I saw the dr. on Tuesday morning and he confirmed that I did indeed have a minor CSF leak. He said he wasn't going to treat it because it wasn't leaking out my nose or ear, and that eventually it would absorb. I evidently have been slow to heal around the patch he put on the dura. (could it be that I just turned 60? )  I thought at that time that the headache might be sinus because I did wake up w/some congestion that morning.  Well, that headache appears every afternoon, in varying degrees of intensity, around 3.  The rest of the evening is predictable.  I feel rotten and can't even eat because of the nausea, even though I don't actually thrown up.  My back is still giving me problems, so between the head and the back, I walk like an old lady!  Lovely picture.

Any advice or wise counsel?  I sure could use some.  If I go back to teaching feeling like this, I might actually give in to the temptation to bite the heads off small children!      Do heat packs or cold packs do any good?  I have never had migraines, but that's what it feels like.  I have a new appreciation of what my poor daughter has gone through since third grade, poor baby.  AT the rate I am going, my liver is a goner because of all the Tylenol I have eaten like candy.

A miserable Ms. Maggie.

[leapyrtwins]

Maggie -

sorry to hear about your setback.  I'd never heard about goose eggs at the incision site until I read about them recently in another post.  So, since they were a topic for discussion, I can say with confidence that you are not alone. 

Recovery always seems to be about two steps forward, one step back.  I think it's just the nature of the beast.  But rest assured, you will prevail.  This is just a minor bump in the road and you'll get over it.  Hopefully very soon 

Keep your chin up,

Jan

[Jim Scott]

Maggie;

Please know that many of us - me included - are thinking of and praying for you as you deal with this recent, unexpected set-back.  Having not experienced an incision/CSF leak and the subsequent headaches, I can't offer you any credible advice on dealing with this.  I wish I could but I'm sure others will step up.  However, I would ask your doctor about pain medication and anything that might tamp down the nausea, which has to be as exasperating as it is unpleasant, especially when you were recovering so well, up until this issue arose.  You may want to postpone returning to teaching so as to spare the kids the loss of their heads! 

Jim

[MAlegant]

Maggie,
I wish recovery would just follow the normal trajectory and get better and better but this just does not seem to be the case.  You will get through this (I agree you should ask for meds--better living through chemistry--to help with pain and nausea).  I am so sorry you feel rotten, and you might want to postpone the return to the classroom.  I taught for a long time and I know how demanding it is.  Take the time you need to feel better and get through this rough patch.
Best,
Marci

[sgerrard]

If you are Ms Maggie when your head hurts, and Priscilla when you feel fine, then we want Priscilla back! 

I hope you are able to manage this little bump in the road (should I say goose egg in the road?), and get past it soon. These leak things seem to crop up some times after surgery, and are always a nuisance but always clear up with a little time.

Get well soon.

Steve

[msmaggie]

Thanks for the encouragement.  It really does help me resolve to get through this patch.  I will put in a call to the dr. tomorrow and see if there aren't some prescription meds I can be taking instead of massive amounts of OTC.  I also feel like I need to be walking and moving more.  When I am in pain, my tendency is to hole up and stay still, but the back thing needs to be exercised out.  I just have to manage that around the headaches that have my head in a vise. . 

I appreciate the helpful hints, especially when it involves a nice long soak in the tub...decadence with a purpose!  I have a cold pack, just wasn't sure about putting it on the goose.

Priscilla...looking ahead to better days 

[Rivergirl]

Msmaggie, sorry you are having a hard time, hope it clears up soon.

[Keeping Up]

Good Morning to all,

 and he confirmed that I did indeed have a minor CSF leak. He said he wasn't going to treat it because it wasn't leaking out my nose or ear

I think why I love these boards so much is the honesty and reality check that everyone provides.  Even in pain, you sound upbeat and positive.  However, the above is simply baffling.  I am glad you are not leaking CSF out your nose and ears - that has to be good news!!!!!  Stay positive and hope the pain and you are back on the fast track really soon.

Your picture reminds me of my 4 year old's kindie teacher (she is awesome) - think you said you were a teacher  in the primary grades.  I can only imagine facing a room-full of boisterous boys (my son's class has 17 boys - out of 20) of over-eager 4 and 5 year olds!!!!  Yikes.  I do hope you have a fair bit more time off before you have to face the little ones again.

Take care.

[Pooter]

Priscilla,

I had that "goose egg" around the incision as well.  Like you, I was told it was CSF, but it wasn't leaking anywhere else.  I got the headaches, etc.. that go along with that.  Be careful if you are put on "diamox" for it (what I was put on).  I ended up having an allergic reaction to said drug and it landed me in the hospital for 4 days.  Be VERY mindful of how you are feeling if you're put on it.  Unfortunately, Dr Vrabec is right that time is the best cure for it as it will eventually absorb (a few days after I was off diamox, it cleared up on its own).

You might try putting an ace bandage wrap on around your head.  It will look very similar to the wrap you had at the hospital (anyone else remember my homemade bonnet?)..  Anything to put pressure on the area so that maybe it will absorb faster.  Like you, I was popping OTC drugs to help with the headaches.  When it all came down to it, time was the magic cure.  Unfortunately.

Be well, my friend.  Keep us updated.

Regards,
Brian

[msmaggie]

Thanks Brian!
 I am happy to know that you went through the same thing and that it will get better  Yesterday was AWFUL!  I had a relentless, pounding 18 hour headache, and just in case I wasn't having enough fun, for whatever the reason, I got chills and a low grade fever. I called the service and the dr. I talked to said I could go to the emergency room or call the dr. in the morning.  I elected to wait until morning.  I talked to Kathy and she said not to take the T3 any more because it wasn't helping, to just stick w/Advil or Motrin.  What a strange business we are in!  18 hours of pain bad enough to make me wonder why there isn't an astronomical suicide rate among migraine sufferers, and they tell me to take Advil.  I will try the Ace bandage trick-anything to make the swelling go away.  The headaches are directly related to the swelling. Kathy didn't suggest any prescription drugs, so I will soldier on.  Today is better...so far 

If I didn't have all these wonderful people to calm my fears and lift me up, I wouldn't be able to get through all of this. Thank you!

Priscilla

[Kaybo]

Priscilla~
I hope today continues to be a better day!
K

[JudyT]

I most certainly feel for you. I too suffer these migraine like headaches.........usually beginning late morning. I am 4 yrs. out from CK. I try to structure my day to allow for "quiet time" in the afternoon. Using relaxation techniques......soft music...aromatherapy....audio book etc. I have pain meds if it is extreme.....but usually I can stay on top of it by employing one or all of these. I never had this type of headache prior to treatment. I have a sense of fullness too that can be uncomfortable at times. I think sometimes internal stress is the root as it seems when I am concerned about my health and progress it is worse......not sure about this....but maybe. I hope this passes soon and you can get some relief.
Judy

[Brendalu]

I am so sorry this hit you!  You were doing so well and will again.  Maybe it is nature's way of saying you're going too fast, slow down a bit.  Happy Belated Birthday!
I have migraines, so I am on the Topamax route.  Sometimes it works and other times it doesn't.  I generally find that a cool cloth helps more than heat.
I put you in my prayers and hope this will pass.
Hugs,
Brenda

[Denisex2boys]

((((HUGS)))) - - oh can I relate to the headaches - OUCH!  I too found that the T3's did not work anymore - I usually slept with a cold cloth on my forehead and ice on my next - the hospital also told me to start taking an Advil every 3-4 hours whether I needed it or not - I also started taking a magnesium/calcium supplement and started cross0-friction massage therapy on the incision site - ALL this helped tremendously!  I still do usually wake up with a headache - but they are under control now and I can actually be physically active without bringing one on - - the are a few posts on here about the cross-friction massage technique - this really has been a godsend.

[msmaggie]

Thanks to all for your suggestions.  Denise, I started taking the Advil around the clock, and I think it is helping to level off the headaches, if not reduce them to just minor background pain.  Brian, you are right.  The swelling definitely is related to the headache.  Whenever the swelling gets tight and hard, the headache gets worse.  When it is soft, the headaches is sometimes not even there.  Yesterday was a really good day...no headaches until almost 8:30 PM.  WooHoo!! .  I am taking it one day at a time.  When I feel good, I can get a little done around the house.  Yesterday I made a quick run to the grocery store.  Today is good so far, and I will get laundry done and maybe something else.  When it gets bad, I curl up with a movie and stick it out.

Don't know when I will return to school.  Guess my only guide will be when the headaches get more predictable so that I can work around them.  Obviously, I am getting signs that I am not in charge of this event.  I think I mentioned before that all teachers are closet control freaks, so this is hard !  I am learning to be grateful for the good times when they come, and for my faithful friends and patient husband.  If a friend in need is a friend indeed, then I am quickly becoming the best friend ever! .

Priscilla