Author Topic: Angry after doctor appointment  (Read 7017 times)

robertweeks

  • New Member
  • *
  • Posts: 25
Angry after doctor appointment
« on: April 28, 2015, 01:58:10 pm »
I also posted this as a reply on a lower thread, but thought I would post it separately as well because of fear it will be overlooked.  This is my first posting.  My apologies if the double post is rude. 

Greetings,


My MRI a few weeks ago showed an AN (right side) of 10mm x 10mm x 17mm

I have been having symptoms for over a year, as follows:

headaches, nearly continuous though not very bad
hearing loss (moderate according to audiologist, very slight according to neurosurgeon)
tinnitus in right ear
minor nausea, intermittent/occassional, some evidence of declining frequency
poor balance, peaked before Christmas when I started using a cane to avoid falling, diminishing now
earache, right side, nearly continuous
pressure in the right ear, continuous
as the original poster stated, I feel ill a lot, though not severely
exhaustion, can't make it through the day without napping anymore, most days

The neurosurgeon I was referred to by the ENT told me it was impossible for me to have these symptoms due to AN.  He used the word "impossible" more than once referring to headaches, exhaustion, ear pressure.  He said it was unlikely to be the cause of my earache.  He said the AN was the likely cause of the tinnitus and balance issues.  To be fair, I am not clear if he meant impossible for an AN of my size, or impossible for AN in general, though I am sure he made the "impossible" comments as general statements, whether he meant them that way or not. 

He also said that any surgery attempt would be 70% likely to result in total hearing loss of the affected ear, which is certainly contradicted by what ANA has to say about it. 

He recommends doing nothing and getting another MRI in a year.  And he said I should consult with a neurologist about the other symptoms which he viewed as impossible.  In the meantime, I have left my job (of 24 years) because I can no longer do the work in a consistent or quality way and because I can't get through an 8-hour work day without taking a 2-hour nap in the afternoon. 

I am spitting angry about being dismissed like this, but perhaps I do need to consider the possibility that something else may be wrong as well, which is what the neurosurgeon said. 

Very interested in any responses.

Thank you for your time and thoughts.

Robert

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: Angry after doctor appointment
« Reply #1 on: April 28, 2015, 02:35:46 pm »
Hi Robert and welcome to this forum of caring, supportive new friends .....

We, on this forum, are not really in the business of going against what a doctor tells a patient.  However, many of us can attest to the fact that we have experienced most of the symptoms you are describing.

That being said, if I were you I would certainly seek out additional opinions from doctors who are greatly experienced in treating ANs.  There are many experienced doctors around the US who will do free evaluations based on a patient's MRI and audiogram (if available).  If you would like sources, I would be happy to post the names/contact info of the doctors I know.

At 1.7 cm, you most likely have all options open to you:  wait and watch, radiation treatment, or surgery.  Much depends upon the current quality of your life in regards to symptoms.  Typically ANs are slow growing (1-2 mm per year on average) but some of us have had rapidly growing ones.

Re the 70% likely hearing loss with surgery:  much depends on the specific location of your AN and the type of surgical entry made.  This is where an experienced surgeon is essential.

Many thoughts and prayers.  Let us know how we can help.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Dee-dee

  • New Member
  • *
  • Posts: 39
Re: Angry after doctor appointment
« Reply #2 on: April 28, 2015, 03:44:06 pm »
Hi

Find another doctor.  You need a neurologist experienced with AN's. All the best.

D
2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

KeepSmiling

  • Full Member
  • ***
  • Posts: 123
  • details about patient written by wife.
Re: Angry after doctor appointment
« Reply #3 on: April 28, 2015, 06:26:52 pm »
We noticed that many of our doctor visits did not go well. It seemed to us that many of the docs were not well versed in this. Keep searching and reading. You will solve this.
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

alabamajane

  • Hero Member
  • *****
  • Posts: 609
Re: Angry after doctor appointment
« Reply #4 on: April 28, 2015, 06:37:11 pm »
I replied to the other post,, ditto on finding an experienced Dr in ANs who YOU feel comfortable with and get the respect you feel you deserve.

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

arizonajack

  • Hero Member
  • *****
  • Posts: 1140
  • Arizona - It's a Dry Heat
Re: Angry after doctor appointment
« Reply #5 on: April 28, 2015, 07:10:49 pm »
I am spitting angry about being dismissed like this, but perhaps I do need to consider the possibility that something else may be wrong as well, which is what the neurosurgeon said. 

Very interested in any responses.

Thank you for your time and thoughts.

Robert

Give us your location and you'll get comments about AN experts in your area.

Or visit the ANA medical resource list:

https://www.anausa.org/resources/medical-resources

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

ANGuy

  • Sr. Member
  • ****
  • Posts: 438
Re: Angry after doctor appointment
« Reply #6 on: April 28, 2015, 09:01:57 pm »
Get a new Dr.  Post a general location for where you are and you will get recommendations on local talent.  There are many neurotologists who handle AN's routinely all over the country so even traveling long distances usually isn't needed.  AND, many members of this board chose to travel completely across the country to get the treatment team the felt comfortable with and didn't find the travel to be that big of an issue.

Also, in general, your age may also help members here to better understand your situation.  In some ways age doesn't matter, in others I think it does.  Post your age if you don't mind and it will help us get a better picture of your overall circumstances.

Your current Dr isn't cutting it according to your standards, and it is your tumor, in your head.  There simply is no reason to continue with that Dr.  You have a right to be upset about your interaction with this Dr, but, don't let it bother you too much since there are lots of good Drs out there and you will feel much better about your situation once you hook up with one of them.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Ugne3030

  • New Member
  • *
  • Posts: 19
Re: Angry after doctor appointment
« Reply #7 on: April 29, 2015, 09:27:38 am »
Hi Robert,

Many of the symptons have experienced are similiar to mine minus the naseau and the degree of balance issues. In the end, everyone experiences something different or have different outcomes. For me, I am lucky for the very positive outcome thus far, biggest negative is the SSD in right ear. First MrI after surgery in two weeks, will let me know about the two small capsules of tumour they left. My wishes was facial preservation for quality of life. Surgery was worse when they went in but boy, i have the best outcome I could have hoped for.  I had regis seimond surgery for a 3 cm tumour. My surgeons were experienced. I too had lots of consults but went with the very experienced team here in ontario, canada. Interview doctors, make the decision which is best for you and do not let someone tell your symptons are not from your AN. I had a resident tell me the pain in my right side was a figment of my imagination. I complained about him and look, no tumour, no pain.

Adam

Echo

  • Sr. Member
  • ****
  • Posts: 404
Re: Angry after doctor appointment
« Reply #8 on: April 29, 2015, 09:01:40 pm »
Hello Robert,

I also had many of those same symptoms pre treatment including strange headaches up the back of my head when lying down, fullness and pain in my ear that would come and go and even a tingling sensation on my lip and tongue that came and went.  When I questioned my neurosurgeon about the  different type of symptoms I was experiencing compared to his other AN patients, he told me we are all different and he believed anything was possible when dealing with our AN's. 

Now 19 months post Gamma Knife treatment the majority of those symptoms are completely gone!! 

I definitely agree with others posting here and recommend you try to connect with a more supportive Neurosurgeon.  My first consult was a disaster, the Dr. told me that AN's are no big deal and to come back in a year for a follow up MRI and we would talk then.   I had been able to do some research prior to that consult so I knew that AN's were a big deal and I left that first consult knowing full well that I would not be seeing that guy again.  Thankfully I moved on and found the perfect neurosurgeon to help me.  I wish you the same success.

Cathie
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

proudmomof3

  • New Member
  • *
  • Posts: 45
Re: Angry after doctor appointment
« Reply #9 on: April 30, 2015, 09:36:07 am »
Robert,

I had AN about the same size. My doc said the same thing. And I, also, had the exact same symptoms that you are having.

I had Gamma Knife in 2011. It's been 4 years and I still suffer from ear pressure, constant tinnitus, balance issues, hearing loss, and headaches. I can say they are better since the GK, but I don't think they will ever go away. The AN hasn't grown that I know of, so I think this is the best it will get for me.

I am not a doctor, but I will say that I had the same symptoms and I don't think it is coincidental either. Even if you found a doctor who agreed that those symptoms were related to the AN, I'm really not sure what they could do to stop them. I do not regret at all having GK. It did stop the AN from growing. It just did not stop my symptoms. But everyone is different. Some people don't even know they have an AN after surgery. I guess I'm just not one of those...

Take care!
Right AN - 1.5cm
Diagnosed 3/2011
GK  4/2011
Last MRI 5/13 - 1.5cm
SSD Right Side, Constant Tinnitus, Vertigo, Headaches

Ruthie Mac

  • New Member
  • *
  • Posts: 44
Re: Angry after doctor appointment
« Reply #10 on: May 01, 2015, 09:05:54 pm »
I was told by a top doctor in Boston that my symptoms weren't typical of an AN, so they put me through a battery of tests to make sure there wasn't something else causing my symptoms. I suppose there was some comfort to know that I didn't have anything worse! However, if I hadn't been reading this forum I would not have known that my symptoms were exactly like others with an AN. I learned more from this forum than most of the doctor consultations.
My advice is to keep researching and interviewing doctors until you find someone you feel 100% comfortable with.
Best wishes...
Ruth
4/1/2013  1 cm x 1.6 cm left ear
11/1/2013 SRS Varian Trilogy UMass Medical (4 sessions)
hearing is still good, slight tinnitus, working on balance issues

robertweeks

  • New Member
  • *
  • Posts: 25
Re: Angry after doctor appointment
« Reply #11 on: May 02, 2015, 01:33:39 pm »
Thank you very much, all, for your supportive responses.  They help, a lot.  To answer some of the questions, I am 59 years old, and I am no longer working because I couldn't do a consistent and reliable job at work anymore.  Wondering about treatment making it possible to work again, or whether I can get disability for this.  I live in northern California.  And I have submitted my MRI and other records to the House Clinic in Los Angeles for a second opinion.  Thanks again for all your help and support. 

 


anything
anything