Differing doctors opinions

[LarryS]

I am new to this site. I just got home from Houston and have seen an ENT specialist and a neurosurgeon. I have a 4.6-cm schwannoma (AN) diagnosed two years ago. I was treated with Gamma Knife about 15 months ago. I have had MRIs every six months to follow the tumor. Anyway, to cut it short, my tumor is growing and apparently the Gamma Knife did not work. The ENT who did the biopsy says don't have the surgery now as the after effects will be worse than how I am now, that I could need a feeding tube for three to four months afterward as the ability to swallow may be lost. Then on today's visit with the neurosurgeon, he says he wants to do surgery and not to wait. He does not think there will be a loss of ability to swallow and said that we should do the surgery while he can easily "access" the tumor. When told that I was getting two totally different recommendations, the neurosurgeon said that the ENT deals more with the swallowing, hearing, etc., part of the symptomatology and that he deals with the nerves, etc. My tumor is "brushing up along side the brain stem". So the neurosurgeon is going to call the ENT specialist and then will call me later in the week. Does anybody out there have any advice? If anybody has had the surgery, could you tell me what kind of after effects you had? I know what the doctors say could happen, but there is nothing better than hearing from someone else who has been through this ordeal. I would definitely appreciated hearing from anyone.

[FranDS]

"Brushing up along side the brain stem" is a bit scary.  You may want to contact Battyprincess on this forum since her AN did affect her brain stem and I know that it can be life threatening.  In addition, I would seek an additional opinion from another ENT and neurosurgeon who are very experienced in treating ANs.  Good luck to you!

[Survival Nate]

I had one a little bigger and on the brain stem. my though is dont wait if the GK didnt work then get it out it can only get bigger and harder to get out and do more damage, I lost the swallowing fuction for a few weeks but I just had to think extra hard about swallowing and keep the food soft you may have alot of problems afterward as you will read on this board or it can go better than they think, but if it stays on there yoou will be in trouble, the doctors found mine and I was in the hospitle that next morning, they said I was 3 week from being dead or in a wheelchair. I got lucky, but my syptome before was neck pain, deafness, balance loss, then I started going blind.
Those are my 2 cents, we are all here to help

Nate the PC Tech

[Windsong]

HI Larry s,

First of all, where did you have a 4.6 An gamm knifed? wow!!!! and how big is the An now? you must have had some amazing docs...

As for the comment about ENT's dealing with "swallowing" and "hearing" vs a neurosurgeons "nerve" approach, i was finding myself thinking that "isn't it the nerves that end up causing problems with the hearing and swallowing regarding Ans?

Plenty of people here have had Ans "brushing" up on their brainstem. Some, in fact, have had them impinging quite a bit on the brainstem.  There are lots of stories here.

Do you mind me asking where your An actually is? What nerves is it affecting?

I think you perhaps might need a third opinion since the first two seem to be opposed. With whom did you feel the most comfortable? That often can be a great indicator of the way to go. (and I don't mean with whom did you hear what you'd like to hear but with whom did you feel the best all around situation. etc....)

Am wishing you all the best on which road to take.

Sincerely,
Windsong

[tony]

I understand your confusion - actually just because the docs disagree it does not follow that they are wrong - its about balance of probabilty.
If the AN is removed now or in 12 mths you do have to consider
that the post-op period maybe quite tough (in both cases)
Brainstem compression both now and in the future may lead
to a period of poor mobility generally (temporarily)
For example (at 4.5cm)  I had to learn to walk all over
- only now, 12 mths post-op, are we talking return to work
It may not happen to you - but you need to plan
for the long game in recovery.
I dont think a 2nd radio is an option now
- so its surgery - but when.
Also given your size and treatment history
you need to be aware of any changes in your symptoms
- anything changes or unexplained symptoms
its time to call your doc.
I am surprised gamma was considered at 4.(3-5) cms
top end is usually 3.0 ish and possible brainstem proximity
to the tumour tends to rule it out
- due to brainstem compression issues post treatment.
Assuming complete AN removal the brainstem
will return to the straight and narrow
- takes about 3-9 mths
Any other questions let us know
Best Regards
Tony

[Obita]

Dear Larry:

This is the very first time I have ever heard of a biopsy on a AN.  How did they do that?

I know I would send my MRI cd to the House in LA for a 2nd opinion.  I am no Dr. but it sure sounds like it must come out. 

When I met my Doctors they were both in the room for my consult.  The Neurosurgeon and Otolaryngologist explained how they work as a team.  Was the ENT specialist you referred to a Otolaryngologist?

Good luck Larry, and I am so sorry the GK did not work.  Kathy

[Joef]

Wow... thats the largest AN I've heard done with GK! .. and I would send a MRI copy to "House" to see what they say ..

every one is different after surgery ..  mine was a spec over 4cm , and pressing on the brainsteam ... but not blocking CFS fluid "yet" so was not having touble with vision or swallowing .. I did use a walker for a few weeks after surgery .. and was back at my office job about 3 months later (sitting down at a desk!) .. Now is 13 months later .. I still have facial and eye issue, but contines to get better .. but otherwise feel better than I have in a few years! ..

[Patti UT]

Larry,

   Maybe a thrid opinion is in order.  But as big as it is and it is already pressing the brain stem, it's time to get it outa there. Oboviously it is growing, and the larger it gets, logically seems the more danger it presents to your brain stem. Yes the post op is difficult, but it's better than what could possible happen if it continues to press the brain stem. Good luck with your search for the right answer.  Be sure to search this forum for the many posts of really positive surgery outcomes. Not everyone experiences the post op issues.
Patti UT

[LarryS]

Thanks everyone for the quick replies. In my hurry to post my situation last night, I neglected to say that they only treated half of my tumor with the Gamma Knife which they did not tell me until the time of treatment. I had difficulty with balance, headaches, vomiting after the GK and finally, now, they are saying that the symptoms I had were related to the GK, including trigeminal neuralgia which was to the point of being unbearable. So they have upped my Neurontin which seems to be holding the pain. My wife wants a third opinion. I am 59 years old and first noticed that I could not hear as well on my cell phone on the left side. I had just had my yearly physical in February, an exam by an audiologist, and by April, 2004, I had no hearing left on the left side. I went to an ENT who sent me through a battery of tests and then on to Houston to the specialists, about 175 miles from where we live. I worked for the railroad and so thought that my loss of hearing could be associated with my job. Anyway, now that I have been disabled for two years, the railroad is putting me on Medicare with my insurance as secondary. Has anyone had the surgery and on Medicare and how did they cover you. It goes into effect October 1, 2006, and I am supposed to get paperwork in the mail before then. Anyone who can help with information on this would be greatly appreciated.

[Desilu]

Hi LarryS,

Please send your films to House Ear Clinic in L.A. they will give you a free phone consulation if you send them your films. Dr. Brackmann is very good and Dr. Hitselberger is the nerosurgeon. There are many fine doctors at House. All it will cost you is the price of postage. It is well worth the money. I hope things work out for you? Please keep us posted.  Ann

[Boppie]

Larry, Some details on my surgery in Houston...

My tumor was in the medium size range.  I had translab surgery in Houston December 2005.  I am 64 and as fit as can be right now at 9 months post op.  My doctors did not exagerate or hold back anything from me.  I was told my tumor was just "kissing" the brain stem.  I saw it on my MRI and it looked like a mushroom.  The three dimensions were 1.5mm X 1mm X 2cm (20mm that is).  I live 115 miles from Methodist hospital where I had the surgery.  I had Drs. Trask (who debulked the tumor), and Vrabek (who literally picked the tumor off my facial nerve and removed the remains from my head)  My surgery was 9 hours, 3½ to get drilled in, 3 to get the tumor out, and the rest for closing.  I stayed in ICU a full day and didn't want to eat or wake up.  My tongue felt very numb for another day after I left ICU.  But I could swallow, speak, and eat soft foods.  My balance was not too bad when I stood up.  My face and smile were normal post op until day 10.  On day 10 I developed a late onset one sided facial numbness.   All of those facial problems cleared by the one month check up.  I continued to have the tongue numbness and weird taste sensations for several months.  Now I only have tongue sensitivity when I eat dry crunchy foods too fast.

Write back if I can give you any other details.   I can post to you privately if you want to discuss financial stuff.

[Captain Deb]

Do not pass go, do not collect $200, but send your MRI's to house Ear clinic in LA--they are the best in the country at dealing with large ANs and will give you a free consultation. I hate to say this, but I have never heard of anyone treating a 4 cm AN with gamma Knife before. Usually 3 cm is the cut-off point for radiosurgery. Good Luck with everything and keep us posted.
Capt Deb

[Boppie]

Larry, For your big neuroma it is important to get rid of it.  The money is not a matter.  Medicare does a decent job of payouts.  But you just don't get to see the statements and payout information.  Medicare paperwork is very different from the type you might be familiar with on the secondary insurer.  My husband is on Medicare.  I will soon be there myself.  We are accustomed to seeing all of the hospital charges and could demand printouts of the bills.  Not so with Medicare.  It's the Gov!

[Taylor]

My AN was compressing my brain stem i got surgery and now the whole left side of my body is 'tingly'  Hopefully it'll go away i think it affects my balance.

[tony]

Nerve bruising/swelling type injuries can take 9mths to resolve
They do fix, it just takes time
Best regards
Tony