Author Topic: Healing Post Surgery And Doctor Frustration  (Read 6776 times)

Omaschwannoma

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Healing Post Surgery And Doctor Frustration
« on: February 20, 2007, 12:54:46 pm »
Shortly after returning to my home town after my surgery in January, 2005, I remember wanting to get back to the physically strong, energetic person I once was (having sailed around the world), getting back my impeccable balance and fluid motion, being able to hear the softest sound, and I set my goals to reach those levels.  I realised these "wants" were delaying my healing.  I should've been thinking the way I tell my yoga students, "honor your limitations, leave judgement and frustration at the door." 

My approach to healing would've been better served had my doctors added that if at 6-weeks I am not back to normal to relax with it as it can take years for headaches, balance issues, etc. to dissapate and then maybe not.  At my 6-week doctor check, I was told I should be feeling back to normal.  I also remember hearing over and over from my doctors and friends, "You look great!".  Well jeez I don't "feel" great.  Perhaps I should be sitting in a chair, head half cocked and drooling so my doctors would take me seriously?  When this did not happen and the doctors did not have any answers for me I went back home dejected, angry, scared I didn't heal "right", scared I had something to do with why I wasn't back to normal.  It wasn't helping that my husband, unconsciously, was sending signals to me that I wasn't trying hard enough.  I had good days and bad which confused him on my bad days.  On my good days I felt as though I finally made it "through" and all this is over, then bad days came causing frustration and confusion. 

My surgeons at my 6-week visit were confused why I had headaches and was told this had nothing to do with the tumor or surgery.  My daily migraine-like pain sent me on a search for specialists in my town to solve what I was convinced was a new and unrelated development.  More $$, time, more MRI's, more frightening weeks waiting for results, blood tests, and EEG to be told it's all negative and nothing can be found as to why I have the headaches so seek phsyc counseling--sigh!  Now more frustration. 

Then a new developmnet reared up when my good ear developed constant tinnitus, problems with level of hearing fluctuating, pressure changes, thumping, pulsing, fullness began I called my surgeon with this new development to be sent to see an ENT near me.  More $$, time, tests for ECoG function (negative), ABR (positive), hearing (good) all to be told even though tests results show negative for Menier's , but he suspects Menier's.  After discussing my case with an associate ENT more specialized in treating Menier's I was told he wanted to see me.  I'm thinking, "now we're getting somewhere."  Immediately upon seeing him he wondered why I was there?  Now I'm confused and show my frustration.  Once again more $$, time, more confusion as this doctor did not think it's Menier's and focused more on why my field of vision would bounce when walking.  So more tests, this time for nystagmus (positive) showing consistant with surgery, but he did not address the other issues of the good ear.  I also went back to my PT with a script from him for more vestibular rehab only to be told more rehab will not help me--sigh, more $$, time and frustration.  I have ended my desire and now told my husband I'll have to be unconscious in order to see another doctor. 

Knowing we all heal at our own pace is now a comfort for me.  Accepting my limitations has eased my stress and what a bonus when those limitations fall by the wayside!  Putting a time-line on healing can be detrimental and I would advise doctors to come up with another approach to their patients. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

okiesandy

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Re: Healing Post Surgery And Doctor Frustration
« Reply #1 on: February 20, 2007, 02:14:42 pm »
Karen,

All I can say to this one is I understand the frustration. I posted on another site about doctors and my view of them. I feel like for the most part by most of the doctors I have seen for the AN and my Autoimmune Inner Ear Disease that is stealing the hearing from my only hearing ear that they know less than we think they should and do far less than they promise.

I for one think we should whine, gripe and even yell to get their attention. We demand too little from them. Maybe someday some of them will take notice that a big part of our life is impacted by the AN.

Hang in there and hope for the best. I research all of the time on things that will help. If you Google John of Ohio you will find a natural formula that has helped my Tinnitus. Takes a while to work.

Blessings,

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

jerseygirl

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Re: Healing Post Surgery And Doctor Frustration
« Reply #2 on: February 20, 2007, 10:14:24 pm »
Karen,

I had 6x3x3 cm tumor removed 18 years ago. Recovery has been long and rough due to intractable headaches, fatigue, dizziness, spaciness, etc. I went through the same thing as you in terms of going to doctors for help but getting nowhere. The medicines either made me more nauseous, knocked me out completely or made me gain weight overnight ( does not help with balance issues and depression, does it). What helped me most is aspirin, Indocin, shiatsu massage, acupuncture for headaches, Gingko Biloba for tinnitus and exercise for balance, especially yoga. It took me fully 10 years to recover but it really happened. Keep doing what you are doing in terms of yoga, massage and the rest, just don't forget periodic MRIs. A couple of years from now you will be a different person! I really believe it will happen!

          Eve

P.S. Please, post any yoga poses or exercises that are especially helpful for balance

                       
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Omaschwannoma

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Re: Healing Post Surgery And Doctor Frustration
« Reply #3 on: February 21, 2007, 07:01:36 am »
Karen,

I had 6x3x3 cm tumor removed 18 years ago. Recovery has been long and rough due to intractable headaches, fatigue, dizziness, spaciness, etc. I went through the same thing as you in terms of going to doctors for help but getting nowhere. The medicines either made me more nauseous, knocked me out completely or made me gain weight overnight ( does not help with balance issues and depression, does it). What helped me most is aspirin, Indocin, shiatsu massage, acupuncture for headaches, Gingko Biloba for tinnitus and exercise for balance, especially yoga. It took me fully 10 years to recover but it really happened. Keep doing what you are doing in terms of yoga, massage and the rest, just don't forget periodic MRIs. A couple of years from now you will be a different person! I really believe it will happen!

          Eve

P.S. Please, post any yoga poses or exercises that are especially helpful for balance

                       
Hey Eve,

Great idea re: yoga poses on this site.  I'll post it under subject:  Yoga For ANer's
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

jerseygirl

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Re: Healing Post Surgery And Doctor Frustration
« Reply #4 on: February 21, 2007, 08:17:02 pm »
Thanks, Karen!

 Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Jeanlea

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Re: Healing Post Surgery And Doctor Frustration
« Reply #5 on: February 21, 2007, 09:05:03 pm »
Karen,

That's cool.  I'll be looking for the yoga poses.  I've had a few frustrations with doctors myself.  Before surgery I was told that I would have a 5-6% chance of coming out with facial paralyis or numbness.  Guess I'm not good with the odds.  I ended up with both.  At my six month check-up my doctor gave me no false hopes about my face.  He said it wouldn't come back.  Needless to say I was devastated.  I had certain expectations.  After that I had to let them go.  It was hard.  The upside is that my face is slowly coming back.  It may not make it back to where it was before, but it's at least at a place where I can live with it in peace.  I guess that's what we have to do; be at peace with where we are at.  Any progress can then be more fully appreciated.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

 


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