2nd surgical opinion

[Carol]

Today I received my second opinion and the news is not so wonderful. Both doctors say they could remove the tumor, but cannot guarantee me a good recovery. I could come out worse than I go in. The second doctor is also head of the GK dept. at the hospital and he strongly believes that I have side effects of radiation. He said a 50/50 chance on the surgery. My radiation amount is greater than what he gives. He said the other things that effect me are signs of someone that is in cronic pain.

He did say that if it grows or I turn into a prisoner in my home, that surgery would be worth the risk. I guess I'm just not there yet, though some days are pretty bad. Now I'm going to the drugs which I have tried to avoid up to this point.

[wendysig]

Hi Carol,,

I am not a doctor, just another ANer like you.  From your symptoms and past experience with GK, I would say the surgery is  worth the risks.  The truth is , no one can guarantee a good surgical outcome -- they can really only give you an educated guess of what it might  be.  Many things factor into outcome, tumor size, location and how sticky the tumor is -- of course the level of experience of your doctors factors in too.   If your balance nerve is already damaged, cutting and removing it allows the nerve on the other side to take over and over a fairly time, your brain gets used to getting siignals from that one nerve.  I am not familiar with Dr. Jho but I'm sure you did your homework this time around and if your are comfortable with him and confident in his abilities to for it.

As for your statement that you wished you'd started with ball bladder surgery or something simpler, I had gall bladder surgery and my gall bladder ruptured during the surgery and I developed peritonitis and was very sick.  AN surgery was actually much simpler.   

Best wishes,
Wendy

[Pooter]

Carol,

For what it's worth, I don't think any doctor worth his weight in gold can GUARANTEE you a postive outcome.  I'm with Wendy in saying that surgery can be worth the risks as well.  While there is a chance of hearing loss and damage (or removal) of the balance nerve, those two things can be dealt with.  There's always a risk of facial issues after surgery or radiation therapy, however they can, and many times do, resolve themselves with time.

I distinctly remember my doctor's intern going over some possible "what ifs" as possible "issues" after surgery.  I had to initial that I understood that risk going into surgery (death was even one that I "understood").  They have to cover themselves from a liability perspective in case something goes horribly wrong with the surgery.  Yes, they tell you all kinds of this COULD go wrong, but the reality is that many of those things don't happen and happen only rarely.

Get more opinions.. talk to more surgeons and radiation oncologists.. Find one that both gives you the answers you seek and the encouragement and "gut reaction" that you seek.

I wish you well.  Keep us posted on your progress.  Btw, I haven't had gall bladder surgery, but from what I've seen I'll take my surgery any day over that. 

Regards,
Brian

[ppearl214]

Hey Carol,

I just read your posting history so I could get the full gist of what is going on. I'm sorry the GK didn't work, but want to ask one question please.  You noted in the past about having the AN turn black on MRI (that is was suppose to do that).  Now, mine still shows as bright white (almost 3 yrs later), but has not grown. As we know, (regardless of which type of radio treatment is done), the goal of radiation is to stunt it's growth.  Can you please confirm the size of your AN at time the time of GK to what it is being measured now so I have a clearer picture to possibly help?

You also noted in the past you have met with Dr. Maddox (cream of the crop in ATL AN treatments!).   He noted possibly a meningioma vs. AN. Did he elaborate as to why he thought that? We have had many (too many to count, actually) people posting here about having a possible AN and sure enough, it was something completely different.  So, again, just to help me have a better understanding.

Either way, here to help as best as I can... I just want to better understand so maybe, I can better help.

BTW, my family is Northside Atlanta

Please hang in there... we're all here to help!
Phyl

[Carol]

Phyl, will you be at the lunch on the 7th? I will be so hope to see you there.

My tumor is 7mmx5mmx5mm. It has not grown at all. The second opinion was Dr. Field in Orlando. I chose him and Dr. Jho because I wanted the endoscopic procedure and they both do that. He was very knowledgable about GK because he heads that department. He said that there were recent studies to show the effects of the GK and the dosage that I received is higher than he gives. I was told by the doctor that administered the GK that the tumor would turn black.

Dr. Mattox is the one that said it was located where acoustics are located, but my tumor has a tail on it which is consistant with a meningioma. All doctors have said that only pathology will tell me exactly which type it is. I follow this forum because whatever type it is, it is located where most acoustics are located so the symptoms are the same. Mine is totally wrapped around the 8th nerve, compressing the 7th nerve. My hearing is perfect. That was a big concern for Dr. Field.

I know the risks are great and maybe I'll decide to take it, but both doctors sound really discouraging. It's a really tough decision. I did send an email to ask if Dr. Field had any idea as to whether this would improve or get worse. I'll be anxious to hear what he thinks or knows about this. GK, I guess, is still new enough that there just is still a lot of undetermined things about it.

Thanks for the input. I appreciate all suggestions.

[Pooter]

Carol,

Perhaps I don't have all of the information, then.. If you were diagnosed, then had GK treatment and your tumor isn't growing, then why have another procedure?  From what I've read, radiation may cause a "swelling up" of the tumor, but ultimately you should see shrinkage and necrosis.  The goal is to not necessarily get rid of it, but kill it and stop it from growing later.

If not growing, then why are you looking into possibly surgery?

Regards,
Brian

[Carol]

Brian,

My GK was 5 yrs ago and my balance problems have gotten severe. The tumor has not grown, so I, too, feel that surgery is drastic. I was hoping that a surgeon would say that he could take the tumor out, get it away from my balance nerve, get that little tail on the tumor out of my auditory canal and the balance issues would go away. If I could get that assurance, I'd have the surgery. I do know the risks of surgery, but I'd be looking at the best case scenario, realizing fully the risks.

During the day, I have about 10% good time and 90% of my time is battling balance. It is very difficult for me to drive and my energy level is very low. As it stands now, my plan of attack for the immediate future is, get on anti-depressants, go for therapy to try to learn coping skills and get rid of some of the anger, start an exercise program and find a good nutritionist that can help me with the digestive issues. Also, keep the Valium within arms reach! That helps with the panic attacks and anxiety which the doctor says comes from the cronic situation.

Just so you know, when the doctor that did the GK sat down with me, he told me that there were no side effects to the radiation.

Thanks for listening!

Carol

[Pooter]

Carol,

Ugh!  I'm SO sorry you're having to deal with all of that!  I'm not a doctor, but based on what I do know, it sounds like you're having issues surrounding the level of radiation used in treatment rather than the tumor itself.  If your tumor hasn't grown since radiation, but yet your symtoms have gotten worse, then that tells me that it's not the tumor's fault for the progression of symptoms.  To me, and perhaps I'm missing something here, the only thing that has changed is the treatment itself (i.e. the introduction of a certain level of radiation).

Now, that begs the question, and I suppose is central to your quest.. What can one do if extra levels of radiation are causing severe symptoms?  That, unfortunately, I don't know..  I do think that removal of the tumor won't alleviate the symptoms you are experiencing and perhaps they could be made worse..

Perhaps those people who have done extensive radiation searches in researching options would be able to tell you things that might be helpful.

I truly feel for you having to go through this.  I'm hopeful that someone can give us some direction as to what to do..  I'm with your doctors that removal via surgery will likely not result in reduced symptoms, unfortunately.

So, anyone with some answers as to what to do in the case of radiation treatment causing more severe symptoms?

Regards,
Brian

[ppearl214]

So, anyone with some answers as to what to do in the case of radiation treatment causing more severe symptoms?

I'll take this one, my Pooter! 

Hey Carol,

thanks for elaborating on the situation... most helpful.  Now, granted..... there is no growth, I take that as fabulous news! Please remember the ultimate goal of radiation on AN is to stunt its growth... not to shrink it, etc. Yes, there may be minimal shrinkage (pls keep in mind that head MRI's have a total margin of error of +/-2mm and no 2 docs read/measure the same as the other) but again, not the goal. If you had your GK a fews years back and there is no enhanced growth, then that is great news! Honestly, to me, sounds like the GK is doing what it is suppose to do.

As for radiation potential side affects/symptoms... out of respect to your GK doc that told you there is no side affects with radiation... I beg to differ. I had done VERY extensive research on radio before my CK treatment almost 3 yrs ago, which included speaking to many radio patients on this site, having multiple radio appts with local radiation teams (of all forms of radio treatments) as well as quizzing the docs on the CK Patient Support board (they volunteer their time -- no stipends -- to answer questions from patients about all forms of radio treatments.... and they also practice all forms, including GK and CK).  Since the AN is on the vestibular nerve... right away, potential issues... then, toss in a round of radiation... sure, more aggrevation around the nerve... then throw in some potential post radio swelling... sure enough, another possibility, etc.  Balance issues... vertigo.... hearing loss..... enhanced tinnitus... you betcha.  Any of these are potential after affects of radiation (and microsurgical, btw).  No one can guarantee that these things won't happen... and we can only hope they don't.

Carol, I may be out of line and shame on me if I am... but, if you were to say to me "Phyl, if you were in my shoes....."... I would sit back, do a bit more research and quizzing others that are in our shoes and not jump so quickly into surgery.  Reason I say this is... there is a wealth of info here (and around) from folks that have or are experiencing some of the same issues as you.. and we have learned that its all part of the "AN Journey" we don't like. Many have learned ways to adapt to things and even have shared "remedies" here on how to conquer some of the situations.   As you can see from the forum home page, much of what you note has their own sections here (ie: Balance Forum, etc). There are many discussions here about Fatigue, etc.  If you need guidance to help you find some of this info... myself, the other Mods or others here are more than happy to find specific info for you (try the "Search" option at the top of the discussion forum home page for a particular subject.  ex. post treatment fatigue... you will see many discussions about it).

I'm also going to see if Sue (Vancouver Sue) will chime in. She is approx your age, had GK approx 3 yrs ago (right after I had my treatment) and may be able to share on her experiences with her... .

"Oh, SUUUUUEEEEEEEEE!!!!!!*... xoxoxoxoxo

So, I may be out of line, but I hope this helps... and we are here to help as best as we can.

Carol, hang in there.... we're cheering you on and will help any way we can.

Phyl

(btw, won't be there for the 7th, which is killing me since I did get to meet up with CindyJ last summer while there.. please give her a BIG hug for me!  Next trip to ATL to see Mom and sisters, will let you know... should be soon enough. I'm due to see mom).

[cindyj]

Hey Carol,

Good to hear from you again, but sorry to hear you're still struggling with what to do.  When you and I talked on the phone the other day, did I mention Mary, MaryBkAriz, that had cyberknife?  She has had a great deal of issues with balance/dizziness - she began a treatment to kill her balance nerve in hopes to improve her problems.  She hasn't posted recently, but a link to her story is below.

http://anausa.org/forum/index.php?topic=6523.0

Not saying, of course, that you should pursue such a course, but it may be helpful to you to read her experience and perhaps talk with her about it, to share your experiences anyway.

Hang in there - look forward to seeing you next Saturday! 

Cindy

[ppearl214]

Hang in there - look forward to seeing you next Saturday! 

Cindy

I'm so sorry I can't be there for this one! Hugglez Cindy!  

[mk]

Like everyone else here I am not a doctor, but I thought I would give my two cents worth; it seems to me that what you are going through is a slow on-going deterioration of your vestibular nerve. This is expected to happen in the presence of an AN (or I suppose other types of tumors at similar locations) - irrelevant of whether you had GK or not. While this slow deterioration happens, the nerve sends mixed signals to the brain and you end up with all the problems that you describe. So there is merit to the logic that if the nerve is removed completely, or klled (through injections) the other side will take over and compensate, therefore eliminating the symptoms. From what I have seen from previous posts, vestibular therapy is sometimes very helpful, and of course not so invasive. Have you tried them?

Marianna

[Sue]

Hi Carol,

I guess I'll throw in my 2 cents also, if it's worth that much!  I am not a doctor, nor do I play one on TV, and if you are my age or thereabouts (62), you'll remember THAT phrase!   Anyway, I, too, am really sorry you're having so much trouble and I don't blame you for looking into other methods of fixing the problem.  It's a really difficult situation.  I think that most of us don't want you jumping out of the frying pan and into the fire, if you don't have to. It would be horrible if the surgery caused you even more grief.

I think Mariana had a great idea about looking into vestibular therapy.  And I tend to agree that all of this is a by product of a slowly dying vestibular nerve.  I forgot to get that medical degree, darn it, but gosh, what else could it be?  It's pretty obvious to you that it's not happy and you are suffering for it.  I also like the idea of you seeking out MaryBkAriz and seeing how her procedure is doing.  This may be the answer for you. 

I do hope something helps.  We all hate to see one of us having so many problems.  When one of us hurts, we all hurt.   

Thinking of you and wishing you all the best,

Sue in Vancouver USA

[Pooter]

So, anyone with some answers as to what to do in the case of radiation treatment causing more severe symptoms?

I'll take this one, my Pooter! 

I knew you'd be right on my heels with some answers.  You're good that way!

Given that it's very likely to be associated to a slowly dying vestibular nerve, then I'd definitely look into taking it out of the picture through injections.  Surgery, as others have said, is a bit too extreme.  With the other side taking over, you're likely to see an improvement of the symtoms you face daily.

I'll get out of the way and let those who are more versed in this type of procedure and radiation treatments in general take over.. Please keep us updated.  I'm very interested in what happens from here.

Regards,
Brian

[Carol]

Thanks, guys for all the thoughts. Yes, I do remember the phrase and I, too, am not a doctor and I have not played one on tv. Wow! That brought back memories! I'll bet we could share a few!

I had vestibular therapy. Emory Univ. Hosp in Atl has a doctor and clinic devoted to just that. It did help somewhat, but I think, when the nerve is screwed up, you can therapy until the cows come home and it ain't going to help. I can't help but smirk when you tell someone that your hearing nerve could be severed as part of surgery and they say, "Well, you could get a hearing aid, couldn't you?" Well, the nerve would be severed so that makes it really difficult. You're not just hard of hearing!!!!

Anyway, I digress. I will try to find out more because I now have had two doctors say damage from radiation and one doctor say he wouldn't remove it unless it grew significantly. I agree about jumping from the frying pan into the fire!!! I had not, however, thought about the injections to kill the nerve. I just read about that last week, so worth checking into. I'll follow up and see if I can find out who posted that. If any of you know her, I would love to hear how that's going.

Thanks for all the support. Today I really needed it. I try really hard to realize that it could be so much worse and my heart goes out to those of you trying to help me that have had it so hard.

C