Author Topic: My FSR 6 years ago didn't work.  (Read 2559 times)

LizH

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My FSR 6 years ago didn't work.
« on: December 01, 2007, 01:53:57 pm »
I had FSR 6 years ago because I was afraid of surgery. But now I have no choice, the FSR failed, the tumour is growing. I had an MRI 2 weeks ago and saw the doctor on Wednesday. He says the tumour has grown 9mm since I had the FSR. The tumor is now almost 4cm big and is pressing on my brainstem. It has also caused me physical disabilities (impared balance, impaired handwriting, drop foot etc. Anyone experienced this? I am afraid of surgery because of all the side effects like facial paralysis etc. Even the doctor says surgery comes with risks. What risks? I am scared. Thank you. Effiya
53 years old now. AN size 4cm now
waiting for surgery date
FSR May 2001 when it was 2.9 cm
Dr. Laperriere
Princess Margaret Hospital
Toronto. Ontario. Canada

jerseygirl

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Re: My FSR 6 years ago didn't work.
« Reply #1 on: December 01, 2007, 03:33:54 pm »
Effiya,

I am so sorry your AN is causing you so many disabilities! When my AN the second time around started to press significantly on the brainstem, my neurologist, who specializes in ANs and NFs, told me to get the neurosurgeon involved because I "might have walking difficulties". So, ANs can cause everything you describe and then some. It so happens that I have no problem with the tumors, no matter how much they press on the brainstem but I have problems after the surgeries. I eventually recover from them (thank God) but slower that anybody wants and expects. I have suffered everything you describe - impaired balance, impaired handwriting and drop foot- after BOTH surgeries. After the first one, hemiparesis ( the official name for it) went away in a few months and after the second one it is going away also. I can now walk most of the time at an average speed with a slight limp on the AN side. I simply say it is the resullt of a ski accident. I found it goes down better than brain surgery. I am still weaker on the AN side but already can jog, too! There is hope!

Will you feel better after AN is removed from the brainstem? Most people do eventually but not immediately. Right after surgery I doubt you will be able to anything, however, most bodies, unless they are very old and suffer from chronic disorders, recover. Think about it: my mother last year suffered a stroke and was also unable to move her right side (for a different reason), was 76, had diabetes, kidney disease but still recovered.

MS, AN or both? AN would cause weakness on that side and walking difficulties because you need both sides to walk. I have just seen a woman with MS and she has trembling and weakness on BOTH sides. What side is your AN on and where do you have the weakness? Most neurologists would test you for MS but would say that you "might have MS" unless you have classic symptoms in which case they state it with certainty. White matter changes might be from ischemic disease as well, not just MS.

I agree with you that it is difficult to live and work with hemiparesis. It is no joke, and you are trully disabled. Even applying make-up is next to impossible. In addition, everybody loves a well moving person, I know that from experience. If you are walking funny, you somehow ( I don't understand why) do everything funny in everybody's view. It is frustrating ,annoying and downright depressing!

As far as your facial nerve is concerned, most surgeons nowadays will leave pieces of the tumor if your facial nerve is involved and only decompress the brainstem. If left, it most likely will grow slowly before it puts a pressure on the brainstem again. 7-10 years in my case - that what I was told. I understand that you live in Northern NJ. The neurosurgeon who deals the most with ANs after the radiation failure in NYC is Dr.Sen. He accepts most insurances. Ask him for his opinion and keep us posted!

Best of luck to you!

                                                      Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Captain Deb

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Re: My FSR 6 years ago didn't work.
« Reply #2 on: December 01, 2007, 03:44:41 pm »
Effiya,
There are many here that have had surgery on large tumors with good outcomes that have moved on with their lives, believe me. If that AN is now pressing on your brainstem it is now time to start looking for a good surgeon. The risks of surgery far outweigh the risks of leaving it in there to grow and become life threatening. The ANA can provide alot of great material for you to look through and it is free to members ($35.00 membership fee) or at very nominal fees to non members. Just click on the ANA logo on the upper right hand corner, or wait for 4's post to come up and she'll send you all the links. There are quite a few Canadians on this forum, too, who can hook you up with centers of excellence near you.

We will be with you all the way on this journey, never forget that. You are not alone!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

LizH

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Re: My FSR 6 years ago didn't work.
« Reply #3 on: December 01, 2007, 04:14:42 pm »
Many thanks Captain Deb. I will go for the surgery soon.  I have to meet with the Neurosurgeon at the Toronto Western Hospital.

Many thanks Eve. I am Canadian so I have returned to Toronto, Ontario, Canada. I lost my job when I became physically disabled. I had no money for Health Insurance.Yes I was living in northern NJ before. I was hospitalized at the JFK Neuroscience Institute hospital in Edison, NJ and I was diagnosed with MS because of the white lesions found on my brain from MRIs but the radiation oncologist here believes that the tumor is causing my disability and not MS. My tumor is on the left side but my weakness is on the right side. I have symptoms of someone who has MS. In fact I went to the MS clinic in Newark, NJ for a second opinion and I was again diagnosed with chronic progressive MS.
I have to have the surgery and be optimistic.
53 years old now. AN size 4cm now
waiting for surgery date
FSR May 2001 when it was 2.9 cm
Dr. Laperriere
Princess Margaret Hospital
Toronto. Ontario. Canada

jerseygirl

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Re: My FSR 6 years ago didn't work.
« Reply #4 on: December 01, 2007, 04:36:01 pm »
Effiya,

Let's hope you will get at least some relief  from your symptoms after the surgery. One of the local neurologists who deals with MS patients a lot routinely prescribes steroids to them. Maybe, they will help you as well.




          Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Dealy

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Re: My FSR 6 years ago didn't work.
« Reply #5 on: December 01, 2007, 04:59:33 pm »
Effiya- Their was a guy on this site from Georgia who had Regrowth and Surgery after failed FSr after 5 years. He does not post on this site. I believe he had surgery last summer at House Instittute in LA. If I recall-he said they left some tumor because it was stuck from radiation to his facial nerve. His handle was just "B" and his name was Brian. You may want too check his profile on this site and see if you can contact Him for any input on surgery after failed FSr. Thanks-Ron

Jim Scott

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Re: My FSR 6 years ago didn't work.
« Reply #6 on: December 01, 2007, 05:10:40 pm »
Effiya:

I was so sorry to read of your AN returning after radiation treatment.   :(

In 2006, I had Retrosigmoid surgery to reduce my AN (from 4.5 cm to about 2.5), then FSR to kill the remainder.  It worked.  My symptoms (lethargy, frequent shooting pains on the 'AN side' of my head and loss of appetite & weight - to the edge of being undernourished) all disappeared following the surgery.  The FSR treatments (26 in all) have resulted in MRI-verified necrosis of the remaining tumor.  Today, I'm fine.  An occasional 'dry eye', remedied by rapid blinking or a few eye-drops, a few small numb spots on my tongue that don't interfere with my taste and maybe a 10% decrease in my overall balance, compared to before the AN manifested itself, back in early 2006.

I tell you this only to reassure that not every AN surgery automatically incurs life-altering physical challenges.  The doctor is being responsible in mentioning what could occur but I'm sure he would also tell you that he'll do everything he can during surgery to prevent such complications from occurring.  My neurosurgeon took an ultra-conservative approach based on my stated fear of facial paralysis and other post-op complications.  He surgically removed as much of the large AN tumor as possible without disturbing any vital nerves, using a nerve monitoring assistant to help him stay away from disturbing nerves that, if compromised, can cause facial paralysis and other complications.  I came out of the surgery with almost no problems...everything 'worked'.  After a 90-day 'rest period', my surgeon and a radiologist 'mapped' my FRS treatments and took great pains to avoid any vital nerves.  5 weeks and 26 treatments later, I was finished.  The radiation caused no problems.  My wife and I would often have brunch or lunch afterward. 

Today, well over a year later, I'm doing quite well.  My balance is good and except for losing the hearing in my left ear (which was lost before my surgery) and those few niggling after-effects I previously mentioned, I consider myself a very fortunate 'survivor' of an acoustic neuroma tumor. 

I state all of this to reassure you that not every AN surgery automatically leaves the patient with facial paralysis or other complications.  Choose your surgeon carefully (mine had been performing AN removals for 30 years) and try to take a more positive attitude.  Fear of AN surgery is understandable but ultimately unproductive, except as a motivation to seek out and select the most experienced surgeon you can find and not be bullied or allow any doctor to simply dismiss your legitimate concerns.  This is your body, your life.  Be proactive and confident in the surgeon you choose.  You'll have to live with the consequences.

If extensive travel is necessary to receive the best care, please don't hesitate to consider doing so, even that means coming to the U.S.  I would have went across the country (to the House clinic) for my surgery but was fortunate to find an unheralded but very compassionate, experienced and skilled neurosurgeon (Dr. Issac Goodrich) in a nearby city who took the time to listen to my concerns and go forward in a manner that acknowledged my fears while offering me the best chance at a full recovery.  I was blessed and freely acknowledge that.  I want the same for every AN patient facing surgery.  I want that for you.  Put aside your (legitimate) fears, research (this website is invaluable for that) and do not agree to surgery until you are confident of the surgeon and are ready to trust him or her implicitly, as I trusted my surgeon.  Of course, you must act in a timely matter, due to the growth of your AN.  Don't hesitate or procrastinate making a decision but try not to be panicked or too hasty, either.

We all wish you the very best outcome (from your surgery) and trust that you'll return to this forum for advice, support and whatever insight and information we can offer.   Don't be a stranger!   ;)

Jim  
« Last Edit: December 04, 2007, 11:31:21 am by Jim Scott »
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.

Captain Deb

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Re: My FSR 6 years ago didn't work.
« Reply #7 on: December 01, 2007, 06:19:25 pm »
Effiya,
The approach that Jim's surgeon used, debulking followed by radiation, was discussed as an alternative to total tumor resection at the recent ANA Symposium. More docs are using this method to spare the facial nerve. I believe CD's or transcripts of that lecture are available on the ANA's website as well. Message me and I'll try to find out more about that, I still have all the Symposium schedules.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

LizH

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Re: My FSR 6 years ago didn't work.
« Reply #8 on: December 01, 2007, 07:17:21 pm »
Thanks a lot Jim.  I will see if I can come to the US for my surgery. I don't trust the doctors here in Canada when it comes to AN surgery. I trusted the one who gave me radiation 6 years ago and look what happened to me. I thought the radiation will shrink the tumor. I have already started preparing questions I want to ask this Neurosurgeon.
 
There is someone who went all the way to House from Canada for his surgery. I really don't want any facial paralysis and I hope my balance improves after surgery. Right now it is very bad, causing me to fall often even though I use a walker all the time and I'm thinking of a power wheelchair. I have to hold onto something for support all the time.
53 years old now. AN size 4cm now
waiting for surgery date
FSR May 2001 when it was 2.9 cm
Dr. Laperriere
Princess Margaret Hospital
Toronto. Ontario. Canada

Raydean

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Re: My FSR 6 years ago didn't work.
« Reply #9 on: December 01, 2007, 08:01:29 pm »
Hi Eve

I'm truly sorry that you are having to face this again.  I know that it's not easy.  Please know that we are all here for you.

As you decide what to do and where to go for your treatment please stay in close contact with your doctor.  You mention falling alot and that concerns me.  Sometimes with large tumors other issues can come up that can also be a part of the balance/falling and would need monitoring by your doctor.

Please keep us updated and know that you are in our thoughts and prayers

Hugs
Raydean

Do not go where the path may lead, go instead where there is no path and leave a trail.