Author Topic: New diagnosis from Sydney Australia  (Read 15843 times)

caryawilson

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Re: New diagnosis from Sydney Australia
« Reply #15 on: November 19, 2016, 08:46:59 pm »
ANSydney,

Do they believe tumor size may be a factor in those "11%" that may regress?  I wonder if small, medium or large have a greater propensity?

4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #16 on: November 19, 2016, 09:19:15 pm »
caryawilson,

Of the 11% that did regress, it's difficult to see if small, medium or large would be slightly better.

The literature has mixed answers; some say that size is important, while others say that size is not important.

If anyone knows what shifts things towards regression, I'd love to know! (and maybe a few others!)

I think I've only heard of two cases of tumor regression on this forum. Not sure what the class size is (for just wait and watch, no treatment).

All I can do is speculate. The remainder of this post is just speculation and my thoughts. A tumor, in my mind, has a hard time to survive. It needs to provide its own vascularisation. The larger the tumor, the harder it would be to provide vascularisation. At any one time I suspect parts of the tumor are growing and parts are dying. A larger tumor would also grow more since the growth aspect is exponential. It's a dynamic process. If the growth outdoes the parts that die of the tumor grows, and the converse would be true.
« Last Edit: December 06, 2016, 11:12:28 pm by ANSydney »

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #17 on: February 24, 2017, 04:54:30 am »
Tomorrow morning I'll have my first follow up MRI, 6 months after the first MRI. Tomorrow, or soon after, I'll learn if my tumor is growning, staying the same or shrinking.

I'm predicting it has not grown (more than 2 mm) and will do the same at the 1 year MRI.

This is not wishful thinking, but knowing that only generally about 20% of tumors grow (more than 2 mm). In my specific case, I have two things that make the odds of growing even less than generally. The first is that I first noticed hearing loss more than 3 years ago, so given that Stangerup et al 2006 had no growing tumors more than four years after diagnosis, it appears that they reach their maximum size after about four years of symptoms appearing. The second favorable factor is that I have not had symptom progression over the years. My hearing PTA has only dropped about 7 dB in over 3 years and other symptoms are stable.

The most significant factor regarding future growth is growth in the first year. I don't know this yet.

Paldor et al 2016 in their meta-analysis found no correlation with growth when looking at age, sex, hearing loss at presentation, vertigo, initial tumor size, location (ICA or CPA) or tumor side. They found that tinnitus and imbalance may be predictive of growth, neither of which I have.

So, I'm predicting about a 10% chance of growth (>2 mm), 10% chance of shrinkage (<1 mm) and about 80% chance of stable size.

I'll let you know which category I'm in once I know. (Surgery scares me more than the tumor.)

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #18 on: February 24, 2017, 06:45:54 pm »
I had my 6 month MRI done this morning. I was given the films straight after the MRI, which is somewhat surprising. Last time I had to pick them up a few days afterwards, together with the radiologists report. This time, straight away, but no disk and obviously, no radiologist report.

Looking at the films, it's hard to tell if there is growth. It looks about the same size. The disk is so much better for examining the tumor and taking measurements.

There certainly isn't rapid growth. It looks like I'm in the category that I gave an 80% chance, which is stable (0 - 2 mm) growth. I'll know, and I'll fill the community in, the definitive answer once I get the disk later this week.


caryawilson

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Re: New diagnosis from Sydney Australia
« Reply #19 on: February 24, 2017, 06:57:28 pm »
In the US, while NOT standard procedure, you can get the MRI disk immediately after the finishing the procedure.  The report needs to be provided by the Doctor, but you can get the film immediately.  For myself, and my Dad with cancer,  I have requested the disk, 30+ times, and received it every time.

Great to hear.  Congrats.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

mrwva17

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Re: New diagnosis from Sydney Australia
« Reply #20 on: February 24, 2017, 09:56:24 pm »
Sounds positive so far. Looking forward to and hoping for a great official report for you!
4mm X 1.2cm at initial dx 1/17/17
Increasing balance issues since 6/17

riabovamd

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Re: New diagnosis from Sydney Australia
« Reply #21 on: February 26, 2017, 11:33:14 pm »
Helllo,
Here is my humble opinion (I am a physician, just had mine AN removed last month).  Your pest is considered large, if you sit on it it will cause facial nerve damage and increased intracranial pressure.  It is completely removable with surgery so it should recur.  If you opt for radiation it might recur.  I highly recommend surgery by experienced surgeon (over 2000 cases done)in tertiary center.  You will be back to normal self in 2 weeks and for the rest of your life.  I recommend House clinic Dr. Schwartz, if you consider US locations.  I was back to work in 2 weeks. Good luck.

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #22 on: February 27, 2017, 02:46:16 am »
I got the MRI disk today and did each measurement 6 times to be sure. Looks like 0 to 1 mm growth, which is great. I'll call that stable. I'll see what the radiologist's report says. If it's in agreement, I can go another 6 months to again check its natural growth. I'll provide an update/confirmation once I've got the radiologists report.

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #23 on: February 27, 2017, 03:05:28 am »
Hi riabovamd, thank you for your thoughts. I'm monitoring my symptoms very closely. If they get worse, that would be a trigger to move to interventions. (The other trigger is significant growth).

I'm doing formal hearing tests once a month. I also do informal hearing tests daily. I'm on the lookout for signs of dizziness, vertigo, double vision, facial numbness or anything out of the ordinary.  In the previous radiologist report is stated that the fourth ventricle and grey matter looked normal. Nothing looks different in this MRI done 2 days ago.

Is there a way of self monitor cranial pressure? That is probably the greatest risk at this stage; hydrocephalus.

My dilemma is that I have very few symptoms. My hearing is still Gardner Robertson Class II. The only other symptoms is the right side tip of my tongue has altered taste. Both are mild. I have no dizziness or any debilitating symptoms.

Being in Australia, I don't (without paying) get the opportunity to go to a 2000 cases done center. The best we have is about 100 cases done center. That's one of the reasons my current default intervention is gamma knife.

Cheryl R

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Re: New diagnosis from Sydney Australia
« Reply #24 on: February 27, 2017, 04:34:26 pm »
From reading all your posts, I would say that you have probably done more stress on yourself with all your research and looking for symptoms than if you just went ahead and had surgery and get on with your life.
                                             Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #25 on: February 27, 2017, 04:45:46 pm »
I've found the research interesting and worthwhile. I'd like to do more. I'm not stressed by the diagnosis at all. The thought of surgery and some of the things that can go wrong are very stressful. There are some people on this forum that have had very bad outcomes.

Cheryl R

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Re: New diagnosis from Sydney Australia
« Reply #26 on: February 27, 2017, 05:11:26 pm »
That is because the ones who do well leave the forum and Facebook.       I have been thru the AN journey for over 15 yrs and been to 5 of the AN symposiums( which are no longer being held) and met and known many ANers over time who have done well.
    Yes many of us may be SSD but the there can be adjustments in life for many health conditions, not just an ANer.       But personally I can only speak from my own experience and not each individual person.
                                          Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

riabovamd

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Re: New diagnosis from Sydney Australia
« Reply #27 on: March 19, 2017, 10:24:38 am »
Hello, I started writing you a long note, and computer crashed, not sure if you got it (in case if I am repeating myself).  So, to reconcile what crashed I shared my own experience with intracranial pressure.  My cyst of 4.7 cm full of crap was compressing cerebellum and brain stem and was obstructing 4rth ventricle. Symptoms of vestibular nerve compression were similar but thousand times milder.  Nausea with vestibular  nerve, and vomiting when changing position due to intracranial pressure.  Every morning for 3 months leading to the surgery when waking up and getting out of bed, I had to run to the toilet and vomit without any relieve. Changing position would make the mass effect (already pressing on the 4rth ventricle )  even more, causing pressure on the vomiting center  of the brain stem, and  increasing intracranial pressure even further.  Also, vision was intermittently blurred to the point that reading was a struggle, sending texts or looking up media on the phone was a struggle.  All that went away after surgery day 1.  You do not want to wait for that feeling. 
« Last Edit: March 19, 2017, 01:43:18 pm by riabovamd »

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #28 on: March 19, 2017, 04:05:40 pm »
Hi riabovamd. Didn't get any other note, just this post here. I would be interested in anything related to elevate intracranial pressure. As I already stated, your symptoms sounded terrible. My biggest fear is brainstem compression resulting in symptoms, and hydrocephalus. Not sure what the early warning signs are.

I will line up a surgeon in case things go south. Until I get radiological confirmation of significant growth or significant symptoms beyond vestibulocochlear or facial nerve neuropathy, I will keep having serial MRIs (without contrast).
« Last Edit: March 19, 2017, 05:43:26 pm by ANSydney »

riabovamd

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Re: New diagnosis from Sydney Australia
« Reply #29 on: March 19, 2017, 05:13:38 pm »
Morning nausea/ vomiting is a sure sign of brain compression... BTW, since you are hoping to slow down the growth, look up research of Dr. Konstantina Stankovic from Harvard and Mas. Ear clinic, on Tumeric- curcumin and AN . It is promising, but doses need to be very high to work.  I think you can even contact her for some info.  If you get some advice, pls let me know, too.  Good luck with your self designed  "wait and watch" approach, keep posting.

 


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