Frustrated!!!

[skamper]

Hello all, sorry I haven't posted in awhile

It's been up's and down's for me the last week.  I went to PT on Tuesday last week and she told me I was doing great.  She wished all her patients came in after surgery doing this well.  I got a simple exercise to do until Friday's visit, which I didn't make it too.  Did anyone else have to do PT after surgery?  I'm just not sure it's something I really need but I'm sure the doctors know best.

I'm supposed to return to work on the 17th.  This really scares me.  I'm not sure I have the strength to return full time but that's what the doctor's have down as of now.  Did anyone go back at 6 weeks full time?  I have a desk job, but the PT worries the constant computer work, phones, and just the all the interaction is going to be too much for the first week or so.  Did anybody else feel this way?

I've been really having some bad headaches too!  Okay, maybe not headaches, per say.  It's more of a sore head.  When I get up or change positions I feel like someone has smacked me on the back of my head.  Once I get comfortable, usually lying flat for a second or two, I feel better.  Is this just because I'm getting all the feeling back in my head after surgery?  Just wondering if anyone else has had this feeling?  I was actually brought to tears in frustration last night, first time too.  I haven't cried at all since surgery, I thought I was doing so well and all.  Now, not so sure.  Haven't wanted to get out of bed for two days.  Finally did today for the girls, it's mother's day!

My husband has been so awesome through everything.  He's always there for me and I feel awful, like I'm taking advantage of him.  He went to get groceries today for us, he does everything lately!  I love him so much!  Thank you Billy!

Oh, and do you ever get use to the SSD?  I haven't been out to really test it out yet, I guess I prefer not to know, sad!

Okay, I guess I vented enough today, after all, it is Mother's Day.

Happy Mother's Day to all you great moms!

Susan

[Jim Scott]

Hi, Susan ~

I'm sorry to learn that you're so stressed out - on Mother's Day, too!   

Every AN surgical patient is somewhat unique in their recovery but if you don't feel as if you're really benefiting from the PT, you aren't legally required to do it.  I had a VNA PT lady put me through 3 PT sessions, then she stated (for the record) that I didn't need her services any longer and to just do the exercises and walk as much as possible.  I did the the exercises (which I hated) for a few days, then stopped, but I did continue to walk a lot (2 miles per day, on various surfaces) and toss a ball around with my ever-helpful wife.  I did fine and was driving again 2 weeks after my surgery - with my doctor's permission. That's my experience and others have similar stories.  Some take months to recover fully, others take weeks and some, just days - but that's rare.

Your skull will usually remain a bit sore and then quite sensitive at and around the incision site.  This lasts anywhere from 6 months to a year.  My skull began feeling normal at about 9 months.  Before that, I could not rest my head on the incision side without discomfort.  So, what you're feeling is quite normal.   

I was SSD for a few years prior to my AN diagnosis and subsequent surgery so adjusting to it was never a big problem.  However, if you had hearing in the affected ear, it takes time to adjust - and some never do.  That's why they invented the BAHA.  They work quite well for those who require it.

Venting is always allowed here, Susan.  If not here, where?  Happy Mother's Day. 

Jim

[opp2]

Hi Susan,

Happy Mother's Day. I'm sorry you're having such a stressed day, and time. I know Nickitynick (sp) had some concerns going back to work early and worked with her doctors and therapists to push that date out.

I wish I could help but I don't know what else to say. All the best.

Nikki

[leapyrtwins]

Susan -

I work a desk job - I'm an accountant - and I returned to work 1/2 days @ 2 weeks post op and full days @ 4 weeks post op.  Everyone is different in their recovery, so you need to do what is right for you.  If you feel you aren't ready, talk to your doctor.  I don't think any doctor will send any patient back to work who legitimately is not ready. 

My neurotologist offered to send me to a PT post op, but I didn't feel I needed it.  He had me doing vestibular exercises prior to my surgery and I continued them post op, and in my case I didn't feel a PT was necessary.  However, like I said above, everyone is different and has a different recovery.  Some AN patients go to PTs, some don't.  You should do what is right for YOU.

There are people who adjust just fine to being SSD, but I definitely was not one of them.  I was miserable being SSD and although it took me a while to figure it out, I found I was also depressed.  I chose the BAHA because of this, and it was absolutely the right decision for me.  It's not for everybody, but those who choose it are usuallly highly satisfied with it.

Jan

[wendysig]

Susan,

If youdon't feel ready to return to work, you should definitely talk to your doctors.  I'm sure they will be helpful in getting you an extension on your disability.  Many people go back to work  part time for the first week or two if it is possible, so perhaps that is something you can work out with your boss.  As far as PT goes, not everyone want or needs to go, so do what is right for you. 

Although many people adapt very well to being SSD, like Jan, I found it frustrating and it generally made me miserable too.  There are alternatives, BAHA (a bone anchored hearing aid) which requires a minor surgical procedure to implant an abutment into the skull.  After a healing period of approximately three months you begin to use a sound processor which attaches to the abutment and sends sound to the working cochlea in your good ear through bone conduction.  I love my BAHA and from what I understand, the new sound processor that came out late last summer (the BP100) is even better than my Divino.  Another option is TranEar which also works through bone conduction but doesn't require surgery.  An audiologist takes a mold of your ear canal and part of the device fits tightly into the ear canal and there is an external part of the earpiece that fits around your ear.  You can learn more about both devices by going to www.cochlearamericas.com and www.transear.com.  I know there are a couple more devices that may offer help with SSD, but their names escape me right now.  You can check posts under Hearing Issues for more information on them.

Wendy

[kenneth_k]

Hi Susan.

I'm sorry you're frustrated but is OK not to be happy all the time.
I would like to share my experience on being SSD.

For the first weeks after surgery, I was happy to be alive and I was impressed with myself on how much I could actually hear.
Then I returned to work and started to go out again to familyparties, movie theatres, concerts, restaurants and attended meetings related to work.

Most of the time (say 90%), I'm able to compensate for my disability simply by making sure, that there is no one standing/sitting on my def side.
But I don't always get to choose, and sometimes I feel embarrassed and awkward. Those times I feel sad, but I must emphasize, as times go by it is getting more seldom.

My point is, that SSD is bearable and not necessarily a limiting factor. But there will be occasions, when it is not funny at all.

Best regards, Kenneth.

[tenai98]

Hi Susan
I'm SSD as well and have a BAHA. You may want to consider getting one. Mind you I have adjusted to being SSD quiet well as I only use my BAHA for work.  I waited five months before going back to my work due to the nature of the job. I had to make sure I was ready to handle any situations that arose. I'm a drving instructor and I have many prescious cargo to worry about. So I made sure by having my son (aslo an instructor) test me.  I'm back to work five days a week and just increased my tme by another hour.  So now I work 6 per day.  As my job requires me to work from 3-11 pm, I couldnt handle being out that late plus the drive home. Its amazing how even after a yr, I tire easily.  So, only 6 hours of work for me As for PT, I didnt need any as the tumor had killed my balance nerve prior to surgery.  But I did use my WII to improve my wobbleling.  At times now, I still stagger. Seems there is this invisible force that pulls me to one side...You are still early in your recovery...It seems that docs really dont understand what goes on in our heads after this type of surgery...I believe someone should rewrite that text book!!! My neurosurgeon told me that my occassional slip of memory is NOT due to surgery..AH!  I know better...I would love to see him tell that to all the peeps on here with an affected memory...
JO

[Cheryl R]

Susan, check with your dr to get more time off.  It is very hard pre op to know how we are going to feel.    Plus one can look fine but we sure don't feel fine with the wonkyhead feel.    Our Iowa City surgeon has gave several of us more time off.     His secretary is the on who gives us the run around when we call to try to get more time off.     
   I have never done PT but just made sure to do alot of walking.        The biggest thing is to keep active with however you decide and to keep at the areas that might seem hard.  Outside and the malls and big stores with large open and bright areas can be hard but one has to keep being there to help the brain compensate.                 You are at the time when one thinks they should be all near normal again but it it can take longer than one thinks and will improve.
                                                            Cheryl R

[moe]

I agree with all.
If you can get more time off, or start off very slow, then that would be highly recommended, especially with the head "aches." Feel good Before you go back to work, or else you may end up taking more sick time off. 
The docs don't know until we tell them specifically how we are doing, and what we need, since no 2 cases are alike. Gotta be your own advocate.
Maureen

[pjb]

It is so easy to say do not get frustated but do not be so hard on yourself this is major surgery and we are recover differently. If you feel you are not ready to go back to work ask your doctor for an extension most disabilities will go up to 3 to 6 months. You have to look into that with your place of employment to make sure they will hold your job and if they do take the time to heal both physically and mentally. Also look into trying to go back part time because you will be overwhelmed and exhausted so you have to go back gradually.  I did not have PT after surgery but I did have Vestibular Therapy that I found was a blessing once a week with the therapist and the other days I had to do at home on my own. You can get use to be SSD but it takes time or if you find you cannot there are options you can look into to help you with that.. My prayers and thoughts are with you...

Best Wishes,

Pat

[Denise S]

Hi Susan

I don't like to feel like I say something to change peoples thoughts, BUT if you financially can afford it and don't mind being home.....do speak to your doctor  and work to make arrangements to go back to work when you feel more comfortable.   Not sure how good your work is, but even go in to visit for a bit to see how you feel.       I am one that the sudden SSD (had great hearing pre surgery, none now)    has really bothered.   It seems almost harder with having children at home too...my opinion.   Our brains are trying to compensate so hard for the hearing loss.   Like Jan though I too had/have the depression part.   Physical pain and pressure feelings and the changes from surgery (which are compared like brain injuries) can fatigue our bodies and mind VERY fast.  I did start seeing a social therapist when things really started getting to me and she is a great support.   I also have been wanting and trying to get the BAHA (said NO way first few months past surgery...about 3 months post op I decided I don't like the SSD at all and that surgery is much simpler, so changed my mind)  Now battling with insurance..ugh!   

As for physical therapy:  I had been given great post op vestibular exercises and did them faithfully, plus lots of walking which both helped greatly.   My biggest issues almost 2 months post op was neck aches and some back, so my doctor recommended PT which helped with that (FYI...I had previous neck & back aches, and now have actual diagnosis for that....but just telling my story)

I really hope you get feeling better soon!  There are many of us that understand the frustrations you are going through.   And crying....let it out!!
BEST WISHES
Denise
 

[jennifer7]

Hi Susan
I took 10 wks off, I've been back 3 wks and wish I would have taken more time. My headaches have gotten worse since I've been working and now that I'm at work I can't go back on leave.
I did vestibular therapy for two visits and still do the exercises she gave me.
Hope you are feeling well soon

[skamper]

Wow, you all are awesome!  Just reading suggestions from those who have been through this always makes me feel so much better!  Thanks!

I talked with PT on Tuesday and she suggested 2-4 hours a day for the next 2 weeks.  She wants me to try that first and see how it all goes.  She's just worried I will wear out easily, I know I will.

I got my release to go back to work yesterday, part time 2-4 hours until after I get back from Vacation on June 7th.  Then we will see from there, hopefully back to full time!  My family is going to DisneyWorld on May 30th. we can't wait.  Who would have ever thought after a brain surgery, a vacation, so soon?  It will be the best ever, the girls have never been there.

I too have the Vestibular exercises, my girls think they are so funny!  Some are quite silly.  I actually get to sit in my computer chair and spin it 25 times or so.  No dizziness with that which is great!

The SSD is my downfall, it depresses me alot, to think I had full hearing in that ear, and now none.  The doctors haven't suggested any hearing help yet, maybe that will be the next step.  I haven't been out much at all to see if I can cope with it yet.  Work next week will be the true indicator if I can handle it or not.

AN eye very dry?  Does anyone know what to do with AN eye being dry?  Mine closes just fine, no problem there, it just doesn't produce tears.  I'm using the drops the hospital gave me during the day and the ointment they gave me at night.  I'm almost out of the ointment and just didn't know if I need to contact the neurosurgeon or someone else.  I can buy over the counter?

Okay, I better go practice my exercises. Thanks again to everyone for your advice and well wishes.

Susan

[Cheryl R]

Susan,    The ointment is over the counter and Target,Walmart & drug stores have them. I use the Refresh brand but one can try what brand you want as some are not real cheap.  I still use it at night.      For daytime use if I need it. the Refresh Liquigel is my favorite.      Just a tears type is not usually enough and the heavier one works well.     Celluvisc is even heavier but makes the vision more blurrier.     
Have fun at Disney World.   The AN symposium was there in 2005 so I finally made it there and would love to go back.
                                       Cheryl R

[Nickittynic]

I'm one who had a rough time with work stuff, as opp2 said.
My neurosurgeon wanted me to go back at 6-8weeks, but I didn't feel I was ready and my PT didn't think I was, either. Even though I was doing pretty well moving around she noticed some cognitive issues and referred me to a speech-language pathologist. Then I also had depression issues and saw a social-worker-therapist.

Overall, it was a whole big mess that was really stressful (my work's short-term disability group would only take the word of the neurosurgeon who said "your fine", not the PT, SLP, therapist, and general practitioner who advised more time off), but I'm really glad I stuck with my gut and waited longer. When I finally went back at around 5ish months post op I was actually ready. I did start part time and took about 2 months to work up to full time. I still feel sometimes like work is going to cause a breakdown, but I think that's mostly because my job is pretty physically demanding and I work night shift - the night shift doesn't agree me with me anymore.

Everyone's so different. The only thing I can advise is "go with your gut". If you feel you want to get back to work, go for it - just take it easy and maybe see if you can do a week or two part time. If you have doubts, find someone 'official' who will support you in that, since truely you're the only one who can judge readiness.

Same goes for the PT. I found it helpful, but I think ultimately for me PT was as much a mental thing as a physical. If you don't think you need it, there are plenty of people on here who never did PT and instead worked from home and came out just fine. 

Watch out for the depression / frustration. I thought at this point I had it beat, but the last week or so I've just felt "sick and tired of being sick and tired".
At least this group is always here for venting!