Author Topic: newly diagnosed, MRI results, which options? Frightened.  (Read 5609 times)

Alison

  • Full Member
  • ***
  • Posts: 166
newly diagnosed, MRI results, which options? Frightened.
« on: September 10, 2012, 04:24:22 am »
Hi,

I have been recently diagnosed and have posted something about this in inquiries. But I have now received my MRI write up, no actual images (I'm in the UK and we don't get them) and it says:

"14x10x8mm mass lesion filling the medial two thirds of left iac and bulging into the cerebello pontine angle. No convincing dural tail. Appearance little more in keeping with acoustic neuroma rather than mengingioma. May be an acoustic neuroma rather than meningioma".

I'm thinking it is prob an AN, but are treatment options the same? My main symptoms are dizzyness and balance problems for 3 months which stop me doing much as I feel drunk all the time when I walk anywhere. I have had tinitus over the past month and some facial, mouth eye twitches and crawling sensation over my head.

I am frightened about not getting the balance issues resolved and and by reading some of the facial side effects of surgery, I think surgery is the way to go and wondered if anyone can advise please.

I think in my nearest centre they prefer retrosigmoid.

Many thanks,

Alison


CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3227
  • Life is good again!!
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #1 on: September 10, 2012, 08:41:53 am »
Hi Alison .....

I do not live in the UK so I really do not know what your options are there.  Just wanted to welcome you to this forum of caring, supportive friends.

As you read through posts on this forum, be aware that of the people posting with good results on here, you will read that they feel what they did was the best way ..... which, of course, is true ..... for them.  Choosing a treatment decision is a very personal thing so do not be swayed by this or that person's good result by doing ________.

Check out all of your options:  watching and waiting (with regular MRIs), surgical removal, or radiation treatment to stop its growth.

Now, all that being said, if you are already having facial twitches, watching and waiting may not be appropriate.  Surgery is the only way to actually see the tumor and the adjacent facial nerve.  Admittedly I have had no experience with radiation treatment for my AN, but from reading about/talking with others who have had it, there is often some post-radiation treatment swelling that occurs and then goes back down so symptoms can become worse for a period of time.

If you have the option of coming to the US for treatment, there are several medical facilities in this country who will review your MRI CDs and audiograms and give you a free consultation.  This is true for both surgery and radiation treatment.  Let us know if you would like further information about that.

Best thoughts and prayers.  Let us know how you are doing and what you decide.

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

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #2 on: September 10, 2012, 02:01:43 pm »
Hi, Allison ~

Assuming your tumor proves to be an acoustic neuroma, it is relatively small and quite possibly amenable to radiation treatment, should you choose that option. 

To the best of my knowledge - and I'm a patient, not a doctor - the surgery to remove a mengingioma is similar to that used to remove an acoustic neuroma.  However, due to location and size, hearing and facial nerves have a better chance of surviving the operation relatively intact, thus preserving hearing and facial mobility.  Retrosigmoid (suboccipital) is the oldest and most favored AN surgery approach although Translabyrinthine has become quite popular.  I underwent the 'Retro' surgery to 'de-bulk' my large (4.5 AN) and then had it addressed with radiation (FSR).  Both procedures were highly successful.

As Clarice sagaciously advised, the choice between radiation treatment and surgery is highly individualized and based on a variety of factors.  Not the least of which is your doctors recommendation and of course, your personal preference.  Thus, we do not offer direct advice on choice of treatment but we do offer our wholehearted support for whatever decision you make.

I trust that you'll allow us to continue to offer you the advice and support you need as you deal with this medical challenge.

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.

Alison

  • Full Member
  • ***
  • Posts: 166
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #3 on: September 11, 2012, 01:24:04 am »
Thanks so much Clarice and Jim for your support and advice.

I am waiting to hear about an apt with the neurosugeon to discuss my options, but it may be some time. There seem to be so many things to consider but I realise I'll have to be guided by the surgeons. It's great that Jim has had such a positive outcome especially with such a large tumour.

Can anyone tell me if the size of the wound opening varies between translab and retro? I've seen a photo of the translab wound, Cathy kindly sent me a link, and was shocked it went all the way round the ear. I naively thought it'd be smaller. Does the retro involve a metal plate, but not the additional op for the removal of abdominal fat? So many questions, I know, sorry. It's just the more I know, the more I'm prepared.

Thanks again for the invaluable support.

Alison
CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3227
  • Life is good again!!
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #4 on: September 11, 2012, 07:23:52 am »
Hi Alison .....

The incision/wound shape, length, and even the exact placement of each surgical approach seems to vary from surgeon to surgeon ..... maybe even from patient to patient.

I have had two retrosigmoid approach surgeries (with different surgeons), one on each side, and both incisions are essentially the same shape (reversed on opposite sides) of a slight C shape and about 3 to 4 inches long ..... they start just above my hairline, about 2 inches back from my ear, and curve up along my ear.  I also had a translab approach and the incision is about the same length but is about an inch back from my ear, and starts just at the top of the front of my outer ear and curves around to about 2/3 of the way around my outer ear.  If you send me a private message with your email, I would be happy to send you a picture, if you'd like.

I have titanium mesh in one of the retrosigmoid surgeries and the translab surgery ..... no metal plates in any of them.  You cannot have metal placed in them because of the need for follow-up MRIs.  Titanium mesh is OK for MRIs.  In my case I only had the abdominal fat put in the translab surgery.

Since it all seems to vary somewhat in each case, if I were you, I would ask my surgeon's office which approach he/she will be using and size and placement of the incision.  His office staff should be able to answer the question.

Best wishes and many prayers.

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

Alison

  • Full Member
  • ***
  • Posts: 166
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #5 on: September 11, 2012, 08:35:06 am »
Thanks Clarice, that's really helpful to know.

I was wondering about  MRIs if there was metal and assumed titanium would be classed as metal. Sorry you've had to go through three of these operations, you really must be an expert by now, although no doubt reluctantly! It's so good of you to share your experiences with us worried newbies, it is much appreciated.

Thanks for offering to send a photo, my email is in my profile.

Best wishes,

Alison

CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

Alison

  • Full Member
  • ***
  • Posts: 166
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #6 on: September 12, 2012, 02:53:12 am »
Thanks grannyslim for the information about your experience with radiation.

As I'm in the UK I won't be able to pick and choose my surgeons like in America, but the upside is the treatment is free on the NHS.

I won't know if my tumour is suitable for radiation until I have my apt with the surgeon at my nearest centre, but I have read that if you have balance issues, these are not improved after radiation as the tumour is still in the same position. Is this correct? Mine is bulging into the cerrebello pontine angle. I don't know if that is significant. But my balance issues and dizziness are my biggest symptom, although I find the recent eye twitches most worrying.

So much to consider! All personal experiences are very gratefully received to put into the mix.

Many thanks,

Alison

 
CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #7 on: September 12, 2012, 12:42:50 pm »
Hello again, Alison ~

Clarice adequately explained the incision size and shape but I wished to add that I have the titanium mesh but did not have the abdominal fat procedure, which was my neurosurgeons choice.  I healed just fine with no real problems and the titanium mesh had no effect on subsequent MRI scans.  One other point about the incision wound - it heals rather quickly and is relatively thin so even my short (mens) haircut covered it within a few weeks.  Most female AN surgical patients can easily cover the wound with their hair after surgery and the scar becomes practically invisible within a few months.  Six years on, I would be hard pressed to locate my incision scar, even if I wanted to do so.   

To the best of my knowledge, radiation treatment may not have much effect on balance as the radiation is intended to halt the tumor's growth, not destroy it, although radiated tumors can shrink in time (mine has) but they never totally disappear.  I'm sure your doctor will be able to fully explain everything at the time of your consult. 

I have to mention that with a 50% marginal tax rate in the U.K., health care is not exactly free, even if it may seem that way because no money changes hands when a patient is seen or services performed.  However, if most patients are satisfied with the NHS then all is well.

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.

Alison

  • Full Member
  • ***
  • Posts: 166
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #8 on: September 13, 2012, 12:23:01 am »
Hi Jim,

thanks for the information, it's really helpful. It's good to know your scar is virtually undetectable now.

I take your point about the NHS :o)

Best wishes,

Alison
CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

geexploitation

  • New Member
  • *
  • Posts: 40
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #9 on: September 14, 2012, 09:00:15 am »
Allison, just to clarify a couple of points you asked about: the fact that your tumor extends into the cerebellar pontine angle (CPA) possibly makes a retrosigmoid approach more likely, but otherwise is most likely not significant. Anatomically, the CPA is just the space between your brainstem and the little holes in your skull that the cranial nerves travel through on their way to your facial muscles, ears, etc. So it sounds likely that your tumor started in your intra auricular canal (IAC) and has ballooned out via the path of least resistance into the CPA, where there is some open space for it to grow. Tumors in the CPA can get very big -- you heard about Jim's, and mine was in the CPA and over 4 cm at its biggest point. So comparatively yours is still on the small side and therefore possibly a candidate for radiation.

Any balance problems you are experiencing come from the tumor interfering with nerve signals. It's very easy for that to happen in the small space of the IAC. Getting into the CPA probably wouldn't increase the balance problems because things are packed less tightly together than they are in the IAC, but it does make it possible for the tumor to interfere with other cranial nerves that pass through the CPA. One reason that surgeons like the retrosigmoid approach is that it affords a good view of all those nerves and, therefore, how the tumor may be stuck to or otherwise interfering with those nerves.

You mentioned eye twitches... I would guess that this comes from interference with the facial nerve (which controls movement of most facial muscles), which travels through the IAC, or possibly the trigeminal nerve, which controls, for the most part, facial sensation. The trigeminal nerve does not go through the IAC, but it does go through the CPA.

I don't know if any of this is helpful or not. Hopefully it is... I know that for me knowledge was power when it came to my tumor.

Good luck with your appointment and decision making.

Sean
=========================
41 mm x 24 mm x 28 mm probable AN diagnosed 1/10/2012.
Surgically diagnosed 7/9/2012 as TRIGEMINAL schwannoma and removed via retrosigmoid at MGH in Boston, MA by Drs. Barker and McKenna.

Alison

  • Full Member
  • ***
  • Posts: 166
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #10 on: September 15, 2012, 03:34:43 am »
Thanks Sean,

that's really informative and so useful when it comes to eventually meeting the surgeon. I like your line about the CPA being the point of least resistance.

By the way, I don't know why the smiley face I put in response to Jim's message has turned into the shocked symbol. That was not my intention! I was just agreeing with Jim's perceptive comments. And point taken Sean about the scar.

Many thanks for all the help. It's very much appreciated.

Alison

CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

It is what it is

  • Hero Member
  • *****
  • Posts: 569
Re: newly diagnosed, MRI results, which options? Frightened.
« Reply #11 on: October 15, 2012, 08:32:28 am »
There is nothing I can add to the comments already posted so instead I'll send caring thoughts your way.

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
anything