Author Topic: On the otherside...  (Read 3916 times)

dizzyinca

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On the otherside...
« on: January 21, 2009, 05:38:16 pm »
This is a thank you to the forum, as I am finally at peace, with what will be.  I am an occupational therapist, my last day of employment 7/27/08 was spent at a health fair promoting the hospital for which I am employed, sitting next to a booth that displayed assistive technology for the hearing impaired.  Never would I imagine that two days later, I would wake with severe vertigo and hearing loss that would ultimately place me on the other side of the health system.  Fortunately my background is in rehab which led to a quick diagnosis and I was fortunate to live within driving distance and insurance coverage to seek out opinions from two outstanding institutions in the bay area.  The first opinion felt that since I had a benign tumor, I could put off surgery until this January...at the time I couldn't drive (due to my dysequilibrium), work, or care for my two young children without assistance... The first opinion was a blessing, as I sought out a second opinion, which was a team of surgeons with surgical options and more expertise.  I chose the translab procedure, based on the liklihood that it would have less long term effects on my equilibrium once my brain learned to compensate.  My surgery went well, but I required a longer stay (6 days) instead of the planned 3 days.  I was transferred to the inpt rehab unit (where I normally worked as a therapist) to spend a week working on intensive vestibular rehab.  I never planned on requiring inpt therapies, I thought that since I was a therapist that I would be able to skip that part and maybe do a little outpatient therapy.  But, here I was with post-op balance that was so unsafe, that I had to use a walker and a therapist to guide me down the hall.  I even reqired a cognitive evaluation (which gave my co-workers a good laugh) due to my reaction to morphine.  Along the way, I developed an abdominal seroma which ended up requiring surgery and a 3 day hospital stay.  I am now about 10 weeks out from surgery, and am facing return to work next week (pending my wound cultures).  My equilibrium and balance has improved to the point where I could now pass a sobriety test.  I have SSD, and will be exploring BAHA options in the near future.  I have tinnitus, residual headaches, and an abdominal wound that continues to heal.  I understand what "wonkeyhead" means...not something one can ever be taught.  This experience has given both my husband (who is a nurse) and I, a new understanding of patient care and how important it is for people to be heard and treated with respect.  I hope to convey the experiences that I have had, to improve the practices of those around me, when I return to the healthcare field.  I wish everyone the best and Thanks for listening.
« Last Edit: January 21, 2009, 05:44:53 pm by dizzyinca »

Dog Lover

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Re: On the otherside...
« Reply #1 on: January 21, 2009, 08:59:02 pm »
It gives you a whole new perspective, doesn't it?

Good luck returning to work. Take it easy and don't overdo it. For me, going back to work in the office at 8 weeks (after working 1/2 time at home for 2 weeks) was exhausting, but also very good to start to get back to "normal".  ;D

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Kaybo

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Re: On the otherside...
« Reply #2 on: January 21, 2009, 09:40:10 pm »
Thanks for taking time to post!  It is a "different" norm, but it does become YOUR new normal!  SSD is something that can be lived with or, as you already know, there are devices out there to assist you.  Please take it slow as you go back to work and be ready to be TIRED at the end of the day - for several days!  You might even have a day here and there that is just really bad (& that is OK - physically &/or emotionally) - LISTEN TO YOUR BODY!!  Don't be a stranger...Good luck to you!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: On the otherside...
« Reply #3 on: January 21, 2009, 11:47:23 pm »
Dizzy -

lots of us here have BAHAs, so when you're ready to explore that option further, don't hesitate to ask any questions you may have.  You'll find we're not a shy group  :D 

I had lots of help from my fellow BAHA users prior to my implant surgery and I found it immensely helpful.  I love being able to pass that help on to newbies, so feel free to PM me.

There are also lots of posts on the forum about BAHAs - including photos (some are mine) - all you have to do is search.

If I've said it once, I've said it a million times - I absolutely love my BAHA  ;D

Best of luck with your continued recovery,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

dizzyinca

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Re: On the otherside...
« Reply #4 on: January 22, 2009, 07:55:35 am »
Thanks for the advice.  I plan to start work slowly...and work up as my endurance allows.  It is the one thing that gives me a sense of structure.  I will continue to have limitations on lifting for awhile.  There is financial incentive to work as well, as I have been off work so long that I would have to start paying a COBRA for medical insurance.

I will be looking for other discussion forums for different diagnosis to assist the patients I see, as this has and will continue to be a valuable part of my recovery.  I also have a new appreciation for vestibular rehab...and great empathy for individuals with vertigo and brainstem issues. 

Jim Scott

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Re: On the otherside...
« Reply #5 on: January 22, 2009, 03:05:30 pm »
Dizzyinca:

I appreciate your having a new perspective on patient care and treating them with respect.  I only regret that it came at the cost of having an acoustic neuroma.  However, you seem to be recovering a reasonable pace and ready to resume your profession, at least on a limited basis (at first).  I wish you well and I trust your recovery will proceed apace and your new perspective will benefit patients in your care as an occupational therapist.  Thanks for the informative input.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

dizzyinca

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Re: On the otherside...
« Reply #6 on: January 22, 2009, 04:27:53 pm »
Jim:
I hope that I have always treated my patients with respect.  What I meant by the comment is that when one is a patient, just that little "extra" can go a long ways.  It is something you don't know, until you experience it from the people that you come to depend on for continuation of care.  Having an acoustic neuroma gave me more of a global perspective of the challenges of navigating the health system, let alone having to just getting well. 

I see that you are a global modertor.  Please remove my posts as I am sorry to have misrepresented what I was trying to express.  Thank you.

Cheryl R

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Re: On the otherside...
« Reply #7 on: January 22, 2009, 05:34:44 pm »
I think you represented it very well.        Those who are in health do get a whole new understanding of what patients go thru.         I know I certainly did as a nurse and patients back were glad to know there was someone who "knew it"         I had many also when said had hearing problems that they did too and understood that well.
       You have posted very well.          I don't understand why you feel you did not.
                                                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Richard in Palacios

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Re: On the otherside...
« Reply #8 on: January 23, 2009, 10:44:20 am »
Hello Dizzy,
Your posts were perfectly clear to me and I hope that they will not be removed.  I appreciate you and your willingness to express that realization as a person who really knows.  So much of our experience with health care providers is strictly form the perspective of the patient, which is certainly somewhat limited.  You are and apparently have been one of those wonderful care givers who was and is patient oriented.  I can only imagine how fortunate your patients will be as you treat and care for them with your new extended perspective.  I too am sorry that you became a member of the "wonkyheads" but am thankful that you are able to return to the role you serve in your community and am thankful that you will be there for those of us who need you and your expertise and perspective as we try to get ourselves bck on track.  You are a blessing to those you will come in contact with and I want you to know how thankful I am to know that there are folks like you on our side out there.
Richard
Was AKA "RED in Palacios". That account now inactive. Originally diagnosed in 10/06 9mm X 3.6mm Waiting and watching.
As of 4/08 15mm X 6mm.  No longer waiting and watching.  Had SRS 6/10/08 at Methodist Hospital in Houston

jazzfunkanne

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Re: On the otherside...
« Reply #9 on: January 23, 2009, 11:25:08 am »
Hi Dizzy, i understand as well what you were saying, rest up and take it easyx
over 4.5cm AN removed dec 06

Esperanza

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Re: On the otherside...
« Reply #10 on: January 24, 2009, 07:46:45 am »
Hey Dizzy,
Sounds like we have had a very similar experience with symptoms although I am yet to be treated.  I am also in health care and understand your post completely, having the exerience of being a patient and a provider gives a unique perspective and one that can only be of benefit to both ourselves and our patients/clients. 
I hope all goes well with you when you go back to work, personally I haven't found it to be too much of a problem being SSD on the wards (well so far! -although I will have to spend some time in theatre over the coming weeks so that will be interesting!).

x
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

Jim Scott

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Re: On the otherside...
« Reply #11 on: January 24, 2009, 02:26:18 pm »
Jim :
I hope that I have always treated my patients with respect.  What I meant by the comment is that when one is a patient, just that little "extra" can go a long ways.  It is something you don't know, until you experience it from the people that you come to depend on for continuation of care.  Having an acoustic neuroma gave me more of a global perspective of the challenges of navigating the health system, let alone having to just getting well. 

I see that you are a global moderator.  Please remove my posts as I am sorry to have misrepresented what I was trying to express.  Thank you.

Dizzyinca:

No need to remove your post.  I don't think you misrepresented anything.  I simply saw your AN experience as sharpening your understanding of patients and their concerns, I didn't mean to infer that you had no respect for your patients prior to your AN experience.  I apologize if my message confused the issue.  Your post will remain.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

wendysig

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Re: On the otherside...
« Reply #12 on: January 26, 2009, 12:55:08 pm »
Dizzy,
I have to agree with everyone else.  Your posts definitely belong right where they are.  The fact that being a patient has given you new perspective will only make you better at what you do.

Wishing you continued good healing and success,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

eugd

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Re: On the otherside...
« Reply #13 on: February 07, 2009, 09:20:06 pm »
I am also a OT and 2 years removed after my Sx.  the amazing thing is that one of my first patient on my case load when I started was a young male post AN. when I did rehab,  funny how things connect the dots.     
Eugene- Age 32
2.15 cm mass on the right nerve removed via the retro on 12/20/06. D.C. from the House Ear Institute on 12/23/06. Dr. Freidman, & Dr. Shwartz. were the doctors. No post opt. vertigo, hearing loss  or facial nerves damage.  No major post opt headaches.

AMD

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Re: On the otherside...
« Reply #14 on: February 15, 2009, 08:53:06 pm »
Dizzy,

Thanks for the post.  I am in healthcare too...and RN.  You're right about it being very different when WE are the patient.  It can only help us to be more sympathetic and possibly empathetic with our patients.  We all grow from our experiences, and this forum is a great place to share the stories.  Also, I am in OT right now, and thank God for you therapists!!!

-Amy
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.