6 Week PostOp Sugeon's Visit / Work Issues

[Nickittynic]

This is normally the kind of stuff I would post in my blog, but since everyone including my family and all the people I work with read it, I try not too post overly-emotional or work related things there. Plus, I've been feeling very lonely lately and wanted to share with people who may have "been there, done that".

Yesterday I went for my six week postop visit with my neurosurgeon. It basically went like this- I arrived at 8:35 to sign in for my 9am appointment. Finally got called back at 9:20. The whole appointment was less than 10 minutes, maybe more like 5. First thing the Dr asked "What things are bothering you since the surgery?" I thought "Oh geeze, where to start?" but brought up my face first, since it's the most obvious. He said he thought it looked better, like it had more tone and he said he saw some twitching movements (which is funny since I haven't seen a thing and I see it all the time..). When I questioned him about timing he said he had high hopes it would recover in about 9 months to a year. So that's the good news, but it's really the only thing we talked about on my list of "bothers" because it was so rushed. So then he went on to say my balance looked a lot better (which I guess is a fair assessment when now I'm walking and last time he saw me I wasn't), did a quick neuro assessment, and basically said everything is normal and go back to regular life.
In one fell swoop he removed all my restrictions, from "24 hour supervision" and "no bending at the waist" to "no driving" and "don't go to work yet". A pretty wide range of stuff! Originally, in the hospital, he had signed work disability papers out through Nov 22nd, and I was feeling nervous about that. So to be told to, essentially, go back to work tonight (I work night shift), I got pretty upset. My surgeon's apparently pretty big on working as much as and as soon as possible. Now I'll admit I probably have some hang ups regarding working that need to be figured out that are independent of the surgery recovery, but I'm still not sure recovery-wise that I'm ready, either. As I've been telling everyone "I might be fine, but I might not, and I don't want my patients to be the ones to find out."
So anyway, I asked the Dr about the original date of the 22nd, and saying I wanted more time to work with therapy (which he said, over the phone a month ago, I didn't need.. therapy disagreed and fought for me) on my shaking left hand. He said something about how I wouldn't be any worse off than the older nurses that shake and for a second I laughed and said "well that's true." But then the more I thought about it the more upset I got. I'm not one of those old nurses, I'm 24. And he knows I'm a nurse and he's a doctor, how would he like it if I told HIM, "Oh don't worry about it. You're right handed anyway and won't shake anymore than those old surgeons.." 

So, being very emotional and probably a little unreasonable lately, I cried the whole way home, cried to my mother and mother-in-law, and cried until my husband made me go take a nap. I can't explain exactly how I'm feeling. The best I can get to is "I'm tired of everyone telling me everything is going to be fine and go back to normal when I don't feel fine or normal!" I guess since I look okay (aside from the droopy face), people assume I am okay. They don't see the conscious effort going into every step, or the way I watch movies now while thinking "I'll get it soon!" and never do until it's over and my husband explains it. It's like my efforts to work hard and look and act "normal" have backfired on me.

I talked to my physical therapist about it, as she's awesome and has essentially become my case manager in addition to my therapist. She was pretty flabbergasted. She said "I think you're doing really great and showing amazing recovery, and I think you'd be ready to go back [to work] in a few weeks, but to be honest I'd be a little nervous about you going back tomorrow.." She had also said I should ask about maybe going back starting with 4 hour shifts and working up to my normal 12 (not sure how well the brain will work at 5am...), something the surgeon said I definitely should not do, since I don't want to get a label of a "disabled employee" or something.

I haven't even tried driving yet, so there's the whole thing of getting to work, too. :p Plus it's not like I really have time with twice a week PT and OT, a follow up with the ENT, and a follow up with my corneal specialist in the next two weeks - haha!

Anyway, I'm not sure what I'm looking for here, but I guess I hoped for more out of my six week visit, including maybe some sympathy for how tough this has been and continues to be. If anyone has any ideas on what exactly I'm trying to say and can say it better, maybe that would help. Sorry this ended up so whiney and emotional! Maybe I should move this to the Emotional Issues forum (and I will if the mods so decide and tell me how..). I certainly know that people have had it worse than me and have coped better than me, I just can't get myself motivated to be tougher!

Thanks all!

[tenai98]

Oh my...one step at a time....I teach driver ed and needed to be sure of myself before going back towork...Neurosurgeon said to go back to work (inclass only at 3 hrs) in july I was only 3 months out....balance was someowhat ok...but at that point I was experiencin some minor headaches....So I stayed off work til end of Sept when I felt ready to return not only to inclass but incar as well....I'm only wokring 5 hrs a day and believe me I"m pooped when I come home....I'm lucky where my job is my hobby and not a necessity...I dont think i'll go back to full days but stay at 5 hours...I suggest you try going back only part time...We are stronger then what we think in situations like this...Some have gone back at 6 weeks as Ernie comes to mind...Man he was out of the hospital I think in 36 hours....
JO

[nancyann]

Nicky:  It seems to me that your doctor was extremely insensitive & ignorant to your needs at this time.   I'm a nurse also but haven't worked the floors for years.  I went back to my nursing 'desk job' after 8 weeks, 3 days a week for 2 weeks & felt overwhelmed, I can't imagine going to work on the floors, let alone the night shift, after only 6 weeks.   Your doctor is a horse's backside if you ask me.    I feel you should consult your PCP,  & you definitely should return part time at first & see how you do,  but not yet,  wait until you feel more ready.   If you feel you need more time after 11/22, have your PCP extend your time off.
You've been through major surgery with post complications - facial, eye, balance/nerve - jeez louise what is that doctor thinking telling you to go back 'tonight', full time (what a schmuck).
Take care,  always good thoughts,  Nancy

[sgerrard]

I went ahead and moved this to Cognitive/Emotional. The question of returning to work is a more practical one, but I think the emotional impact is more important here.

I have to agree that your surgeon is displaying a little too much of that "True Grit" attitude that America is famous for. It is useful to have at crunch time, when you just have to do something no matter what. I don't think that applies here, though. Returning to work is a big step, and there is no urgent reason why you should get back to it tonight or tomorrow, unless maybe if the hospital is really desperate for nurses at the moment.

The somewhat tricky thing is to remember that you do need to push yourself a little bit past your comfort zone, so that you continue to make progress in your recovery. That should be something like 10% more than you are comfortable with, though, not 5 times as much. Going back to work in stages seems much more sensible to me - but do try to get back to it, you will feel better about yourself once you do.

You said "I'm tired of everyone telling me everything is going to be fine and go back to normal when I don't feel fine or normal!" I think this is a common experience for AN patients. Besides physically healing from the treatment process, we have to go through some mental recovery, and that is not very obvious to those around us, including the doctors. Walking and talking are only part of it. When just making your morning coffee seems like a challenging task, you know you are in for a long day.

The good news is that you will make it. How much time it will take is anyone's guess, because it just depends on your particular situation, and it turns out differently for everyone. Take care of yourself, and sort out the work question as best you can as you go along. Maybe no one else does, but we understand.

Steve

[Jim Scott]

Nicki ~

I can understand your feelings after a too-brief neurosurgeon follow-up visit that ended with the doctor basically dismissing you as 'healed' and sending you off to a demanding job as if you just recovered from a sprained toe instead of serious surgery.  Definitely insensitive and very likely, disappointing.  Unfortunately, many neurosurgeons tend to be like this.  They are specialists, you see.  They were hired to remove the tumor - and did so.  You came through the surgery O.K. with no serious problems, you look 'fine' to them so they are ready and willing to say "have a good life" and, in effect, dismiss you while their nurse shouts out "Next!" to the waiting room crowd.   Unfortunately, I've read similar accounts on these forums, before.   

I don't know the specifics of your work or financial situation but I surmise that, from the tone of your post, you're not really ready to return to your nurses' job.  One of my wife's best friends is a charge nurse at a local hospital and although she performs mostly administrative tasks (and hates it - but at almost $40. per hour she can't say no) and I know that a floor nurse has a demanding job and cannot do it justice if she is suffering with the kind of deficits you describe.  I hope your PT can help you get a little more time off before starting back to work.  However, my fellow moderator, Steve, has made a very apt suggestion that you will need to challenge yourself a bit to help your recovery.  As Steve noted, challenging yourself does not mean pushing beyond what you can reasonably do.  Nancyann also made a valid suggestion (along with her barbed-but-accurate comments about your insensitive doctor) about attempting to secure part-time work, at first, explaining that you're recovering from serious brain surgery and cannot handle a full patient load, yet.  If you make it clear that you're anxious and willing to come back full time, that might help help melt any resistance to hiring you back as a part time nurse.  Of course, I'm simply speculating.  You know what works best for you. 

I concur with Steve that you'll recover and reclaim normalcy in time but not by pushing yourself so hard that you endanger your health and your recovery.  That would be foolish, despite your neurosurgeon's caviler attitude about how good you look and your ability to shoulder a full workload, six weeks post-op.  Try to look ahead to wellness and not allow other's opinions to control how you feel.  You know your own body, as we all do, and you'll do what is best - for you.  We're here to support you Nikki, because we care and we understand what you're experiencing.  We wish you continued healing - and better days. 

Jim 

[epc1970]

Niki
I fully understand how and why you are feeling so overwhelmed by where you are at in your recovery and underwhelmed by your six week post op visit. I learned by experiencing it first hand that recovery from AN surgery i s unlike any other type of surgery. I had two shoulder surgeries prior to my AN surgery and I thought I knew what to expect from surgery. I thought that by six weeks post op I would be back to normal. Clearly, I was wrong. It is so hard to explain how the physical changes and challenges break your self confidence.  When I was where you are I cried and cried because of how scared and overwhelmed I was and no one in my life understood which made it more frustrating.  If you are not ready to do something...do not do it. With that said, you need to push out of your comfort zone little by little. Now that the protective restrictions have been lifted, try to do things in small amounts. With work, I would suggest going back for short shifts 1st. If ,after you  do something and it is too much, back off a little bit. The more you push (gently), the more you will start to see the gains.I know it's scary but you have made it this far, I know you can do it! I'm happy you have your PT to help advocate for you. Good luck Niki...take good care.
Erin

[jerseygirl]

Hi Niki,

Big hugs to you across the miles! Unfortunately, I had the same thing going on after the first surgery but there was  no forum like this one at that time. My surgeon ( and neurologist as well) dismissed all my issues and concerns, my family did not understand saying "But the doctor said you are fine". I just remember that time with horror.It was awful and incredibly lonely. It is a good thing you can share your feelings here.

I got the idea that surgeons don't want to acknowledge your multiple issues for two reasons. First of all, they do not want to sign disability papers because they do not want to admit that the surgery they performed made you disabled, even if it is temporary. There is no way you are going to recover in the same time frame as somebody with a tiny tumor. Essentially that is what he is saying. He does not want to admit that the surgery for a huge AN and removal of a portion of cerebellum created neurological issues for you that will take months or years to resolve and some will stay with you forever, visible to others or not. Admitting this carries with it legal and medical implications which are not good for him.  Secondly, by not going to work after 6 weeks, you are ruining his record. Then he cannot say to his colleagues and future patients "Oh, yeah, I operated on a huge tumor - no problems, perfect surgery, the patient was at work in 6 weeks". This affects his reputation and future income.

Make an appointment with him and take you husband and you mother with you. Make sure he understands that you are not going away. Insist and insist on signing some kind of disability papers. Do not walk away without them. By the way, with the kind of work you do, Nov 22 I think is way too soon, but that is just my opinion based on my experience. Good luck to you and keep us posted.

          Eve   

[lawmama]

Nicki,

I am still pre-op, so I can't completely relate to what you are going through, however I think if you weren't feeling frustrated at this point you wouldn't be human.  I had a bad foot-injury earlier this year that required me to be on crutches for 8 weeks.  My mother had to come over and help with the house and kids.  It was SO frustrating to lay in bed and not be able to do what I normally do.  We are young mothers, and mothers just keep pushing themselves.  We are used to taking care of everyone else.  You are in a position now that even when you push yourself your best right now just isn't what you are used to, and where you are having to ask for help for a change.  Of course that is uncomfortable!

I so admire how you have handled all of this.  Don't feel bad if you need some days to just feel sad, mad, angry, and frustrated.  I certainly would!  Just try to remember that you will be stronger after all of this and that when you look back in a year, you will see the huge progress you have made.  It is slow progress, but it is happening.  You have every right to be upset, but I don't want you to forget to be proud of your own strength too.  We all see it.  And I can say that I personally have been amazed and inspired by you.  Keep up the hard work and we are here if you need to vent!

Lyn

[another NY postie]

Nikki,
I agree with both Nancy and Eve on their assessments of your surgeon.  He has not walked the walk, so he really has no clue on what it is like post-op.  I am also at 6 weeks, had a miniscule AN in comparison to yours and I have very few post-op issues other than SSD and balance recovery and I am not ready to go back to teaching 12-14 year olds where I have to stand all day.  I am doing so well that when I checked in at 6 weeks with Dr. Brackmann with really no issues to speak of, he said "So things are back to normal.." which surprised me because I don't think ANYONE is back to normal after this at 6 weeks and so I was taken aback at this idea of "normal".  So I said "No, I am not back to normal, I am on my way but I do not feel normal at this point" at which he made some joke and I love this man and he is a sensitive, compassionate doctor, but it just goes to show you that these doctors maybe really don't completely understand us post op. 

Your job is not a desk job and it requires a lot of stamina and energy.  I could not imagine working a 12 hour day and I fear that this might cause some set backs for you because this is the time for healing and recovery.  Challenge is one thing, but challenge is going to a crowded mall until you are dizzy and then coming home, it is not trying to care of others for 12 hours a day.  Dr. Stefan, the House internist, wrote me a note not to go back to the classroom until 12 weeks because of the nature of my job.  I am not, however, on disability as I have enough banked sick days to cover this so I am not sure if he would have handled this differently if I had asked for disability.  If you are not covered by sick days, I agree with Eve, go and force the issue and get the disability and a few more weeks for recovery.  Then go back part-time until you feel strong enough.  You must take care of your needs at this point and heal and healing means baby steps that maybe the outside world does not understand, but only you can gauge your recovery and you need to advocate for yourself. 

Hang in there....we are all here to support you on this journey - vent as much as you want.  Sending you big hugs!
Cheryl

[TxNurseNoelle]

Good Morning, I just read your post and I feel so bad for you..I am a Pedi Nurse and am still dealing with post-op problems and I am 4 months translab..your AN was 5cm that is a major tumor and 6 weeks is too soon to even think about going back..have your husband call him on your behalf and tell him your symptoms I wouldnt even go to the office and pay another co-pay for a visit..you do what YOU need not what an egotistical surgeon tells you to do..its not his lisense that will be yanked if you hurt a patient because you are going back to soon it is YOURS..relax and get better that is the only thing you should worry about at this point..my thoughts are with you..Noelle

[Cheryl R]

Nicki,    Our surgeons have no idea what it feels like post op.     Your larger tumor esp you would think he would know plus he should know what hard work it is for nurses.                I was back to work at 2 mos  with a smaller tumor.        I asked for more than a month off past my first surgery and my dr then just asked how much time I wanted off.          His secretary is the one who has given more than one ANer a hard time to get papers for more time off once you see you are needing it.            I only did 4 hrs mostly for a while after went back.          I was back to nursing after 2 surgeries and the 3rd time I have retired.     I did get 60% pay from what is I think the family medical leave.     Not sure if that is right name.             I think one can get it for up to a year.  
   Could you even talk to your family dr to have the time off?            There is too much mental work you have to do along with the physcial and it is not easy.     This stress is making it all harder and I would try to do what you can to take good care of yourself!
                                                        Cheryl R  

[Nickittynic]

Thanks everyone for your responses and PMs! And thanks Steve for moving this to a more appropriate forum - I swear I didn't mean it to get so emotional when I started typing! Just typing this all out and hearing your responses helped me feel a lot better.
My Dr is a nice guy in general (he made himself available to do surgery on 9/22 instead of 11/10 when I wrote him an email letting him know of all the bad stuff going on with my family at the same time and my desire to get moving), and a great surgeon, but he is a surgeon, and you all are right that they have a "It looks okay so it is okay attitude." I had had this complaint earlier in the week when the surgeon who did my gold weight said my eye was fine after looking at it, even though it felt like it was on fire!

My plan at this point is basically to talk to my manager and she what she thinks / can reasonably accommodate. She and Employee Health haven't said I can come back yet, so it might not even matter yet what the Dr thinks. My manager did just send me a gift certificate for house cleaning, so I kind of doubt she's expecting me back next week. Also, my PT (who sees me every few days vs for five minutes once, so I trust her opinion more) said I could have my manager call her if she had any questions.

In the meantime, I've used my new "no restrictions" freedom to challange myself around here. This has been the first week since surgery that I've gone to the grocery store (with my husband, but still..), bathed the kids on my own, and today I drove! I just have to remember that I've never been one to do things the easy way, and if I can survive taking 12 science credits in 6 weeks over the summer semester, I can probably make it through this.  I'll probably also call our Employee Assistance Program tomorrow to see if they can set me up with someone to work through some of these emotional issues.

[Nickittynic]

Just wanted to let you all know some good news. While the Dr may not have been very sympathetic, my manager is extremely sympathetic! I talked to her yesterday and was just honest about everything. She said she agrees with my PT that now is a little too early. She said she'd rather I wait until I was sure and come back for sure than get overwhelmed and have to go out again. Every time you restart your short-term disability the first 30 days are unpaid, and then after that it's 60% of your pay, so at this point at least we have *some* income, and most importantly, our health insurance.
My manager said I could even come back part time or with reduced hour shifts if that's what I need for a time. She's honestly worried about *me* - it's so nice!

So my plan now is to talk to my PT about what kind of schedule she would recommend and when to start. I'm also going to see if she has a counseling person she can refer me to, since I think it's becoming evident that my issues are becoming as much mental as physical.... my husband tells me I'm just "psyching myself out".

[Cheryl R]

I am very happy to hear of the better news from your manager.       You will be more ready in time and even then may be more tiring for a while.           It really all does get better in time and this was a major surgery!                     My husband says I worry too much which is very frustrating.     So good that we have others who do know what it feels like!
                                                 Cheryl R

[epc1970]

I suspected that you manager would be very understanding when I read that she gave you a gift certificate for cleaning! It must be such a relief! I also want to give you a virtual high five for moving out of your comfort zone to try driving and giving your boys their baths. It is scary every time you do something for "the first time" after surgery but that is the road to reclaiming you life!
Erin