I am new here and need help!

[dominique18]

My name is Dominique, I am from Europe. in 2008 my brain suddenly experienced vertigo about one minute and reappeared in short time. I went to check everything in the ER and  was diagnosed with acoustic neuroma at 5 mm. My doctor recommended a watch-and-wait approach.  I have no clear symptoms in 16 years.  My acoustic neuroma has been growing slowly in 16 years from 5 mm to 8 mm. I used to get yearly physicals when I visited Europe each year, but with COVID travel restrictions I started to get exams at a university hospital with two departments of Neurology and ENT at Philadelphia in 2021.

My tumor has suddenly increased to 12 mm in length in Feb. of  2024, I still have no clear symptoms but occasional dizziness. I keep seeing doctors in this university hospital and they do not have much WW experience about AN and MRI & contrast agents.  I required to check MRI  every 6 months due to my tumor growth up to 30%.  My doctor agreed but asked me to get an MRI "with contrast "and "without contrast". I worry about possible kidney damage by the contrast agent.  (Recently I found that my kidneys were worse than before due to 2 times MRI with contrast.) Does anyone have some advice about "MRI and contrast agents" ?

In the mean time, I would like to ask for help! If someone could recommend a good specialist in the Philadelphia area and nearly who would provide ‘watch and wait’ care for my case and understand the need of MRI without contrast agent (because I worry about possible kidney damage,) I should appreciate it very much.

[DanFouratt]

Dominique, Sorry you are here but welcome.  When I went through  my journey this site was a valuable resource. The contrast makes it easier for the doctor to read/interpret the image. I have my done at UNC and they did both contrast and none contrast each visit.  I had my radiation done a year ago.  This June I had my follow up with my ENT.  The MRI was with contrast.  We discussed contrast and I will no longer have it.  He told me to be assertive as they all like to give contrast.  My advice is to speak with your doctor and see if they really need it. 

My symptoms were loss of hearing and tinnitus. My tumor grew one period and I decided to address it before any other symptoms developed.  I waited almost 9 months from decision to action, for a series of reasons, my son's wedding one of the biggest.  I was leaning towards surgery at that time and I did not want any facial issues.  Then my doctor forgot to pencil me in for a July surgery and pushed it to October.  This gave me a chance to research radiation vs surgery.  I ended up going radiation to address the tumor. I had no potential hearing loss to worry about.  I put a decision matrix together if you would like to see it please email at Dan4att@gmail.com.

There is a great webinar for UC San Diego regarding getting your procedure at a high volume location.  It is worth the watch.  I will see if I can find it for you.

Good Luck on your decision journey and reach out if you have questions.

Dan

[DanFouratt]

Here is the webinar about high volume centers.  The next two are a little older and I did not watch them before my decision.  I found them after the my treatment but felt they were both great at explaining the process.

03/04/24   UCSD - High Volume Centers vs. Narrow Networks
05/23/20   Approaches to AN Management / Radiation
11/04/20   Cyberknife Radiosurgery for Acoustic Neuromas

Good Luck,
Dan

[dominique18]

Dominique, Sorry you are here but welcome.  When I went through  my journey this site was a valuable resource. The contrast makes it easier for the doctor to read/interpret the image. I have my done at UNC and they did both contrast and none contrast each visit.  I had my radiation done a year ago.  This June I had my follow up with my ENT.  The MRI was with contrast.  We discussed contrast and I will no longer have it.  He told me to be assertive as they all like to give contrast.  My advice is to speak with your doctor and see if they really need it. 

My symptoms were loss of hearing and tinnitus. My tumor grew one period and I decided to address it before any other symptoms developed.  I waited almost 9 months from decision to action, for a series of reasons, my son's wedding one of the biggest.  I was leaning towards surgery at that time and I did not want any facial issues.  Then my doctor forgot to pencil me in for a July surgery and pushed it to October.  This gave me a chance to research radiation vs surgery.  I ended up going radiation to address the tumor. I had no potential hearing loss to worry about.  I put a decision matrix together if you would like to see it please email at Dan4att@gmail.com.

There is a great webinar for UC San Diego regarding getting your procedure at a high volume location.  It is worth the watch.  I will see if I can find it for you.

Good Luck on your decision journey and reach out if you have questions.

Dan

Hi Dan,

I am so happy to read your reply. Thank you very much for your information. I had an appointment for MRI with or without contrast; I cancelled it but I will see the doctor again on 09/24. i will try to talk to her to get MRI without contrast. Two weeks ago I went to the hospital to check my sense of balance. After I see the doctor, I will tell you all of the results. I saw two doctors of ENT and Neurology. The ENT  said i need to do treatment, and the Neurologist said I do not need any treatment now, maybe never... I don't know what I should do ... Maybe I will watch & wait since i already waited 16 years. I will watch the three webinars which you recommended; they look very informative.

Have a great weekend,

Dominique