Author Topic: 25 Year Old - 4.30 cm AN - Advice Choosing Treatment  (Read 677 times)

JayP92

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25 Year Old - 4.30 cm AN - Advice Choosing Treatment
« on: December 14, 2017, 02:30:20 pm »
Hi All,

I apologize beforehand for the lengthy post and apologize if this post is in the wrong section. If so, please move Mod. Thank You

New to forums here. A little background, my name is Jay and I am a 25 year old male. I have been gradually losing my hearing for many years but it has gone significantly worse over the last couple years and I finally got it checked in July 2017. It was careless of me to wait so long to get it checked but the symptoms I have are not so severe that they impact my daily life which is why I have not got it checked until recently. I would have waited even longer to get it checked if not for my girlfriend who cared enough to make sure I went sooner rather than waiting longer and I am forever grateful to her.

Saw my PCP who referred me to an ENT who did a hearing test which confirmed I am borderline deaf in my left ear and recommended an MRI. I did my MRI at the University of Pennsylvania in Philadelphia at the end of October. I read the report online which concluded that I have a 4.30 cm Acoustic Neuroma.

I am now in the stage of deciding where to do treatment. I have met with Neurosurgeons are the University of Pennsylvania and John Hopkins. Below are the options I was told of.


University of Pennsylvania:
>Dr. John Lee (Neurosurgeon) & Dr. Douglas Bigelow (Neurotologist)
>>Dr. Lee spent about 15 minutes with me discussing treatment and answering questions. He introduced me to one of his patients after who also had an acoustic neuroma and was there at the same time for a follow up.
>>Brain surgery with mild aggression was the recommended option with Gamma Knife afterwards if they can not remove the whole tumor or if they think the facial nerve is compromised which will not be known until during the surgery. Estimated time: 12-15 Hours.
>>I do not know if I feel completely trustworthy of Penn because I never received a phone call or anything after my MRI. No one reached out to discuss my results with me. I found out about my results through the online patient portal and that felt very unprofessional and negligent of them. But it is a fantastic hospital and Dr. Lee & Bigelow are both very good at what they do. I am unsure of whether to oversee that Penn did not contact me to discuss results and focus on their Neurology Department and how they have been treating me which has been good.


John Hopkins:
>Dr. Michael Lim (Neurosurgeon) & Dr. Rafael Tamargo (Neurosurgeon)
>>Dr. Lim spent a little over 30 minutes with me discussing treatment and answering questions. He explained things a lot better than Dr. Lee and was more thorough with how he would prepare for the surgery and perform the surgery.
>>Brain surgery with moderate aggression was the recommended option. The goal of the surgery is to remove the tumor completely and focus on saving the facial nerve. Dr. Lee said he will be spending 2-3 hours alone focusing on removing the tumor from the facial nerve and trying to save it from being damaged. Estimated time: 10-12 Hours
>>I felt more comfortable with Dr. Lim because of how he explained preparations. He said he will be hand picking a team for the treatment. I will be getting an MRI right before surgery so he could educate himself on my specific case and plan a course of action going into surgery. He is going to personally check all the equipment in the operating room and make sure everything is 100% functional. If anything seems like it has any issue at all, the surgery may be pushed until all machines are 100% functional. Hopkins is also one of the best hospitals in the country and their Neurology and Neurosurgery is #2 in the country.



  • As of now, I am leaning towards doing treatment at Hopkins. Though it is not as convenient as Penn since I live in Philadelphia, I greatly appriciated Dr. Lim explaining how he would prepare for my case specifically. A big part of that is the MRI before surgery so the surgeon can know if any changes have occured since the inital MRI. I was told by Dr. Lee that the MRI is not necessary before surgery and he would not do it unless I specifically requested which did not sit well with me because even if I specifically request it, I am unsure if he will take the time to look at it and study it.



If anyone has any advice on which treatment would be more ideal, I would love to get more information before choosing and picking a date. Or if anyone has any recommendations for another physician or hospital.


Below is the official MRI report from Hopkins which was more detailed than Penn as well.

MRI Report
"There is a large left cerebellar pontine angle mass which extends into the left internal auditory canal with expansion of this. This mass has increased signal on the T2-weighted images with small focal areas of lower signal centrally. The mass prominently enhances with a small central areas of low on T2 with no significant enhancement consistent with more fibrous tissue. This mass measures approximately 2.25 cm x 4.30 cm x 2.65 cm in the greatest AP, transverse and SI dimensions. The mass is causing significant mass effect against the left pons and the left middle cerebellar peduncles. There is partial compression of the fourth ventricle that is displaced towards the right. No abnormal intra-axial signal within the adjacent brainstem or cerebellum is identified. There is a mild facilitated signal on the ADC diffusion weighted images. Note that the proximal cisternal portion of the left 6th cranial nerve is draped over the anterior medial portion of this mass, additionally the left 5th cranial nerve is draped over the mid superior portion of this mass. The adjacent basilar artery is normal. Due to the signal characteristics and the expansion of the left internal auditory canal is most consistent with a vestibular schwannoma is not felt to represent another entity such as a meningioma. No right cerebellopontine angle lesion is identified. The remainder of the brain demonstrates no focal parenchymal brain abnormality or midline shift. The lateral third ventricles are normal in size and position. There is a small benign Thornwaldt cyst. There is polypoid mucosal thickening within the inferior maxillary sinuses. There is mucosal thickening within the left sphenoid sinus and several ethmoid air cells. Physiologic flow void is present within the circle of Willis."

I appreciate any and all comments whether related to my treatment or just to say hi or otherwise.

Best,

Jay

Patti

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Re: 25 Year Old - 4.30 cm AN - Advice Choosing Treatment
« Reply #1 on: December 15, 2017, 07:15:05 am »
Hi Jay and best of luck! you have your youth in your favor! And two great hospitals!  Patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

LakeErie

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Re: 25 Year Old - 4.30 cm AN - Advice Choosing Treatment
« Reply #2 on: December 15, 2017, 02:37:56 pm »
Jay, both UPenn and Hopkins are highly regarded institutions and the surgeons you mentioned are experienced in dealing with AN's.
Like mine, your tumor is large and exerting mass effect on your brain and the 4th ventricle, so treatment is indicated. I had two opinions and simply went with the surgeon who gave me the most confidence, an admittedly subjective reason, but I had to make the decision based on something. I had no difficulty deciding. Once I did decide I was much calmer than I was just after diagnosis, a feeling of some control over events took hold. Good luck
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Jet747

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Re: 25 Year Old - 4.30 cm AN - Advice Choosing Treatment
« Reply #3 on: December 15, 2017, 10:57:45 pm »
Jay,

Good luck in your decision making process.

It’s probably impossible for anyone of us to give you specific advice on your case.

I chose RS partial resection followed by GK radiation and so far it is working out well for me (treatment was 2.5 years ago).

I was “younger” 37 at the time of my surgery but you are obviously much much younger so I would expect that you will bounce back pretty fast regardless of how you decide to treat.

For me, I weighed consequences of “getting the tumor completely out” versus taking a less aggressive approach.  Both approaches have pros and cons and neither approach is risk free.

If travel is an option for you my neurosurgeon was awesome and works out of the Brain and Spine Center in Park Ridge, IL.

You probably already know this but experience is what you want to look for no matter which route you take.

Feel free to PM if you have any specific questions.

Good luck with whatever you decide!

BR,
Jet
RS Surgery May 2015

GK Radiation October 2015

https://www.anausa.org/smf/index.php?topic=21969.0

 


anything