Author Topic: 3rd Anniversary update and advice to Pre Op Newbies  (Read 2660 times)

Mei Mei

  • Hero Member
  • *****
  • Posts: 1278
3rd Anniversary update and advice to Pre Op Newbies
« on: February 22, 2013, 07:51:57 am »
Dear Forumites and especially our Newbies,
I haven't been on for a long time and see that many of the names are no longer familiar to me.
I had my 3rd anniversary for the Hopkins retrosigmoid surgery on January 12th and the MRI proved fine.   I am losing the hearing in my good ear now.
The posotp experience at Hopkins was horrible and I will never return there.    The US News and World Report lists them as Number 1 in ENT but they are not patient ranked. 
I had horrific Post Op Cluster Headaches and retired on disability right after the surgery.    I lost all of the hearing in my AN ear.   I went to the Hopkins Headache Clinic and the doctor said to stop all headache meds...to come back in a month.   I never went back.  I went to Cleveland Clinic for an Occipital Nerve block where the doctor shot Bipuvocaine through my mesh and I Coded and was on life support.  I went to see Dr. Ivica Ducic who said my Occipital nerves were damaged and to do an excision.   Dr. Niparko was against this and said if I were his sister he would not let me do this so the surgery was cancelled and I tried the Yoga that Dr. Niparko recommended for the headaches.   This ended me up in the ER with an IV of Morphine.    The morphine didn't touch the pain    I called to reschedule the surgery with Dr. Ducic who along with the wonderful Dr. Maureen Moriarity have been my angels since I first met them.    I had that surgery which immediately helped the pain.   I also had Myofacial massage as recommended by Dr. Moriarity.    There was immediate relief from that as well.    What left to be solved is the Titanium mesh stuck inside my skull.    The doctor at GW applied Methylmethcriolate (sp?) on the mesh which glued it in forever and was of no help at all.     Now my life is consisting of twice a week bone builders class, once a week Tai Chi and Qi Gong class and daily practice and coming home by 4 pm to ice my head, neck and shoulder until I go to bed around 11 pm.     So to put it briefly, I  don't know how I am going to continue this for the rest of my life.   My father died last Sept at 98 and I am now 64.    My life will be like this for the remainder of what is left.
Regrets:   Wish I had not listened to Dr. Niparko who said if I didn't have the surgery soon, I would have a stroke.    Wish I listened to a friend and gone to Dr. Kondziolka at U of Pitt for the CK as my tumor was so small.    Dr. at GW said what they did to you at Hopkins never should have happened.     I read on a response to one of my posts that at Vancouver they do not place the mesh and I also read that Tod did not have mesh even after his 32 hour massive surgery.   I wish I knew then  what I know now and waited and gone to a Symposium to find out more instead of being in a rush to follow Dr. Niparko's advice.   he by the way rode on the same plane and wouldn't talk with me and stood next to me waiting for bags as I sat next to him in a wheel chair.   I am glad to know that he left Hopkins in January and is gracing the USC halls.   I hope that he never gets another patient.
Please dear Newbies, keep your treatment as simple as possible and live well.   The surgery is a life changing event.
In good health,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: 3rd Anniversary update and advice to Pre Op Newbies
« Reply #1 on: February 22, 2013, 01:35:10 pm »
Hi, Mei Mei ~

Thanks for taking the time to post your story with it's inherent warnings.  Your advice is sound and why the ANA strongly advises patients to seek out a physician with extensive experience in treating acoustic neuroma patients.  It's a shame that Johns Hopkins is so highly rated yet your experience with that facility was so unsatisfactory.  Your unhappy experience as a result of 'rushing' into AN surgery due to a doctor's scare tactics is also educational.  As we often state, one patient's experience is not necessarily a template for every other AN patient because each AN patients situation is unique and of course, for better or worse, doctors are not all the same.

I'm so sorry that you've had to endure so many problems related to your original AN surgery but I salute you for your determination to make things right to the best of your ability, to remain as positive as your situation allows and, today, for posting your informative, educational message. 

You remain a valued member here, Mei Mei and as always, you're in my prayers.  Hope to see you at the April AN luncheon in Worcester, if possible.

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.

annamaria

  • Jr. Member
  • **
  • Posts: 89
Re: 3rd Anniversary update and advice to Pre Op Newbies
« Reply #2 on: February 22, 2013, 07:01:03 pm »
Folks,

Everybody’s experiences are unique and one cannot scientifically generalize for a single outcome.  Some people have intrinsically a more complex situation; hence, one needs to look at a population of results.  Our services at JHUH were very  favorable.

Take for example this article just published in February 2013 on meningioma (closely related to Acoustic Neuroma) in Chin Med J (Engl). 2013 Feb;126(3):488-93, entitled “Histopathological classification and location of consecutively operated meningiomas at a single institution in China  from 2001 to 2010”. This study investigated the demographic background of 7084 meningioma cases, and the subtypes and locations of the tumors.  Sex and age distributions were analyzed, and the pathological subtypes were classified according to the World Health Organization (WHO) classification. 

Ok, now with over 7,000 cases you can draw a reasonable, strong inference.  With a sample size of one or a handful you get nearly zero statistical confidence.

Annamaria

Mei Mei

  • Hero Member
  • *****
  • Posts: 1278
Re: 3rd Anniversary update and advice to Pre Op Newbies
« Reply #3 on: February 24, 2013, 09:07:22 am »
Yes, but where I followed up at Georgetown, they have been getting more and more Johns Hopkins patients even from out of town.   They only do the same retrosigmoid for every patient.   There was a paper written about these patents written by Dr. Ivica Ducic who will be presenting at the Symposium in LA along with Dr. Maureen Moriarity.   They wanted to talk with Dr. Niparko but he won't listen.   It is a fine opportunity for learning not taken.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Mei Mei

  • Hero Member
  • *****
  • Posts: 1278
Re: 3rd Anniversary update and advice to Pre Op Newbies
« Reply #4 on: February 27, 2013, 06:56:46 am »
Here is a very long clip.   On the discussion of one of the slides he mentions Johns Hopkins patients:

http://www.georgetownuniversityhospital.org/LectureSeries/?lecture=Surgical_Treatment_Chronic_MigraineHeadaches

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

It is what it is

  • Hero Member
  • *****
  • Posts: 569
Re: 3rd Anniversary update and advice to Pre Op Newbies
« Reply #5 on: March 18, 2013, 07:47:12 pm »
I am also very sorry you experienced so much trauma. With caring, Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

 


anything