Quick Update - 18 Days Post-Op

[LizAN]

Hi, everyone.  I just want to post a quick update and ask for your continued prayers.

We flew home on Saturday, the 14th.  Other than getting frisked at airport security, it was an uneventful trip.  I was relieved and, in fact, elated to be home.

On Sunday afternoon, a big thunderstorm blew through here and I almost instantly developed a massive migraine.  By Wednesday, every joint in my body was screaming.

The docs and I have been struggling to get the pain under control.  The only thing that was working was taking Vicodin every 4 hours, PLUS taking at least 400 mg of ibuprofen in between.

Doctor Slattery sent me to the emergency room on Thursday, to get a CT scan and a lumbar puncture (OUCH!) to rule out anything serious.  They came back normal.  Even the morphine drip in the ER was not completely wiping out the headache.  The ER doc sent me home with Norco, which I've been taking along with ibuprofen.  Yesterday was a decent day in that I was able to get up and move around and could tolerate sunlight in my eyes.

It seems I might be having a reaction to the steroid withdrawal.  My last dose of dexamethasone was Monday the 16th.

Yesterday Dr. Slattery prescribed a new, lower dose, short course of steroids (methylprednisolone).  I started on them this morning and have already discontinued the ibuprofen, as they are not compatible.  The good news is that I'm a little more comfortable than I was earlier in the day - at least enough to post this.  I'm anxiously hoping the headaches will abate soon and not come back again when this round of steroids is finished.

I wish I could hang out online more.  I miss chatting with all of you, but I'm spending a lot of time in bed with my eyes closed.  I look forward to catching up with you when I get past this.

Liz

[MDemisay]

Dear Liz,

I am praying that you will get past this setback!  Sounds extremely painful rest friend, rest. Wear dark sunglasses to reduce the pain that enters your eyes from the light....Suggestion, drink plenty of Herbal tea, too.

Mike

[Jim Scott]

Liz ~

I'm so sorry to learn of this sudden onset of severe headaches you're experiencing.  Rest as needed and know that our thoughts and prayers are with you.

Jim

[It is what it is]

Liz, I'm also sorry to hear about your pain!  This stuff is difficult enough without added complications.  Please let us know how you continue to feel as the days go by. 

Karen

[pjb]

Liz sending you my thoughts and prayers and so sorry you are having a difficult time but thank goodness the tests came back normal and hoping with the low does of steroids continue to help so you can put this all behind you ....

Best Wishes,

[jenichol]

Liz,

I hope your headaches improve.  I am 4 wks post op and have been able to continue to decrease my meds to control the headaches I am having.  I think it just takes time for some of us.  I have found ice packs to give significant relief as well.  I will be praying for your continued recovery.  Rest.

Best wishes.

Jan

[jaylogs]

Yeah, just one of those great things about steroids...I hated them (NO SLEEP!)  I hope you will start finding some relief from your pain soon!! Take care and rest up!
Jay

[Manders]

Liz, so sorry to hear about the migraines! I know how frustrating it can be when it seems like you're moving backwards instead of forwards in your recovery. I had a similar experience (although not as extreme) when I began to taper off my steroids as well. I began to get bad headaches so I was put back on them and told to taper off them more slowly. It definitely helped and by the time I had finished them I had no pain. I hope the same for you. Hang in there, I'm praying for you!

[LizAN]

Hi, everyone!

Thanks so much for your encouragement and continued prayers.

The new round of steroids made a huge difference.  Within a couple of days, I was down to almost no pain medicine at all!  One day after ending that round, I started having severe pain at the base of my ear and it covered the back left side of my head.  I could not even lift my head from a pillow without using my hands to help.  That is slowly getting better.  I'm not sure it was steroid withdrawal this time.  All I can figure out is that I must have pulled the muscles when I was trying to look at my computer screen while flat on my back.  <L>

I got a very low grade migraine last night, for which I took ibuprofen, but it was nothing like what I was having before.  Now it's down to a dull ache, with just 1/2 a Vicodin.  I continue to have pain at the surgical site itself.  This is one of many surgeries that I've had over the years.  I've never had pain last this long, so I keep thinking I'm doing something wrong.  I guess this surgery is pretty extreme, even compared to the lung surgery I had in 1980.  Of course, I was also much younger then and therefore more resilient.

I am still having issues with eye strain.  I've been trying to watch the Olympics on TV, but unless I am seated right next to the screen, my eyes start to bother me after only five minutes.  I'm able to be on the computer for about 15 minutes at a time.  I can't read magazines or books yet.  At 26 days post-op, does this indicate I need to see a vestibular therapist or an eye doctor, or just be patient?  Because of the neck pain, I haven't been comfortable getting behind the wheel, either.  Everything went so well in LA.  It has been going so slowly for the last two weeks, I'm having a hard time staying upbeat, but I'm not giving up.

My bosses want an answer about when I'll return to work.  All I can tell them is that I think I'm still on track to return between 6 weeks and 2 months post-op.  For you posties, what criteria did you use to return to work?  My job as an engineer requires a great deal of computer use, as well as some offline reading of documents.  It is also rather stressful.  I don't feel ready and am having a hard time visualizing being ready in two weeks.

Thanks in advance for your perspective!

Liz

[It is what it is]

Hi Liz, as you know my surgery is Wednesday, so I can't be helpful with any of your questions.  But, I can still send you healing thoughts and prayers.  The detailed information you are reporting will help all of us who come after you. I care.

Karen

[LizAN]

Best of luck, Karen!  You are in great hands!  Are you already in LA?  Is there another thread about your journey?

Thanks for the healing thoughts and prayers!

Liz

[It is what it is]

Thanks!  We are in the process of driving to L.A.   We have about 9 more hours before arrival at Seton.  I am so sorry you have been experiencing intense levels of pain.  Thank goodness it seems to be lifting a bit.  Take good care.

Karen

[LizAN]

I re-read what I had written - the current pain's not as bad as I made it sound.  I failed to say that the severe neck pain is only when I try to lift or turn my head with it cocked back, especially on a pillow where gravity is working against me.  It's not all the time, and a second pillow helps keep my head out of the position from which it is hard to lift.  At this point, it's manageable and it gets a little better every day.

Karen, keep us posted.  I'd love to follow your progress.

Liz

[It is what it is]

I will post updates when I can and hope you continue doing the same.   

Karen

[wwarr]

Liz,
I am sending you healing thoughts and prayers your way!  I am so sorry you are dealing with these headaches.  They are not fun and I understand your head pain as I have dealt with it myself.  You are still healing so get lots of rest and take care of yourself.  Don't run faster than you have strength!  If you don't feel ready to go back to work and sit at a computer for the full hours needed, my suggestion is don't.  Check with your Doctor or neurologist.  Computer use causes eye strain and can trigger the headaches and migraines.  My neurologist told me to limit my computer use to no more than 6 hours a day and I am at the 2 year mark.  Everyone is different of course but I don't want you to aggravate your condition and have you go backwards with your headaches.  You will know when your body is ready to go back to work.  Maybe your boss can let you go part time at first.  Don't jump in full time.  That's just my suggestion if at that time you are still suffering from headaches.  Hopefully, you won't and they will pass.
I would be happy to tell you what all I have done if you are still suffering.  Just message me =)  There is hope and Capt. Deb has great threads you can read from too.  It has helped me.
Take care and I really hope you find relief with your head pain.
Stay positive =)
Wendy