surgery with Dr. Jho in February, 2009

[Carol]

This is my story as briefly as I can do it"
I was diagnosed 5 yrs ago with 9mm rt side an. After checking my options, I decided to have GK. I did not do enough investigation. I had the GK in Oct, 2003. Then the "fun" began. I had digestive issues so bad I couldn't leave the house. Fatigue so bad I couldn't do anything but lay on the sofa. I consulted a nutritionist and got those issues resolved to at least be able to participate in life. I cannot get any doctor to admit that these two things are somehow connected. They just call it IBS.

My main symptom is out of balance. My hearing is perfect. The GK did not work because I was told that it might not be an an, but a menengioma and that radiation never worked on that type of tumor. The tumor has not grown, but the balance problems are worse. From 15 to 20 times per hour, my brain has some sort of episode. It can be vertigo, earth quake or the sensation that a wave is washing over me. It makes it really difficult to do much and the fatique is overwhelming.

Here's some of the things I tried:
Nutritionist, acupuncture, therapy, anti-depressants, balance clinic with physical therapist, deep tissue massage and I've been to my pcp, 3 ENT's, and a neurosurgeon.

Dr Jho feels he can preserve my hearing, but because of the radiation, he can't promise anything because I could be suffering side effects of the GK. My deductive reasoning is the main symtom before was balance, so could it just be the tumor? A little tail from the tumor hangs down into my auditory canal, thus the bad balance problems. I have researched myself into a coma (almost) and I'm still not sure I'm doing the right thing. After the blunder with the GK not working, I'm skiddish. I, too, checked with SBI, but the cost was prohibitive. I did know about Dr. Field, but he did his training with Dr. Jho. Dr. Jho keeps coming up as a pioneer in this field, but I can't seem to find anyone who has had surgery with him. The credentials are certainly there. I really would like my life back, yet I am fearful that I will come out worse.

Anyone who would like to share their thoughts, please feel free. I did go to the ANA support group here and that's how I figured out that the GK didn't work. Any thoughts? Any patients of Dr. Jho's?

[jerseygirl]

Hi, Carol,

I consulted with Dr. Jho and hold him in high regard despite the fact that I ended up at SBI. I had a previous surgery that destroyed the points in the skull that he uses to mark the entry so Dr. Jho did not feel that given this uncertainty the chances for my facial nerve preservation were good.  SBI uses a slightly different method, so the landmarks (that is what they are called) are not important. Anyhow, my understanding is that his office can provide references to his former patients if you ask. However, because he is so positive about saving your hearing,  your tumor must be on a small side and your overall chances of successful surgery are excellent. How do you know that GK did not work? Did your tumor grow suddenly since GK?

I hope you keep us posted of any further developments. Best of luck in your upcoming surgery and have a speedy recovery!

                                Eve

[Carol]

The GK did not work, according to the neurosurgeon that did it, because the tumor did not die. It was still white on the MRI and he said it would turn black. (I was not explained all the side effects of GK prior to the procedure. It was "do this" because it's not invasive and it will stop the tumor.) I got suspicious at an AN support group meeting when I met a young woman that had had GK and it did work, so I got my films and went to Emory Univ Hosp in Atlanta and Dr. Mattox is the one that said it was most likely a menengioma, but that you truly cannot tell until a pathologist looks at it after surgery. Dr. Mattox did not recommend surgery, just wait and see. That was 3 yrs ago.

My problem is that I don't know if I am suffering from symptoms of the tumor or side effects of GK. Dr. Jho says he doesn't know and the only thing that will tell is my recovery. He says he can't look at the nerve and tell if GK damaged it. I found out that GK can actually fuse the tumor to the nerve. I really don't know what to do. Surgery is drastic expecially when there is no guarantee of a good turn out. The size of the tumor is not life threatening, so I'm really going for a better quality of life and it could totally turn out to be worse. I scheduled the surgery and just thought I'd continue to do as much research as possible prior to the date. I know that it is all a risk. I am just struggling with how much of a risk should I take. I do read a few posts of people that have had the endo procedure that recover quickly with good results, but I don't think they had GK prior to surgery.

The balance doctor was very blunt with "take it out now or take it out later, but eventually it will have to come out." I am such a bottom line person that I appreciated his candor. Anyway, I have a tough decision to make!

[sgerrard]

Hi Carol,

Just a few comments, I hope they are some help. I am sorry to hear about the balance issues. As far as GK working, radiation does not always produce the darkened center, or necrosis. The main goal is that the tumor stops growing. Generally speaking, radiation will not fix or address balance issues, since it usually doesn't change the status of the balance nerve. If the tumor swells up, the symptoms can sometimes be worse.

Surgery can address balance issues by removing or cutting the balance nerve on the affected side. It takes a month or two to adjust to it, but having no balance nerve on the tumor side is often better than having a damaged one. If that is what is happening with you, then surgery could make the situation better. It doesn't really matter whether it is the tumor or the radiation that has damaged the balance nerve. Doing something that will stop the problem is what matters.

I have no idea if surgery will fix things in your case, but it does make some sense. For a small tumor, there is every reason to be optimistic that the outcome will be good, with minimal side effects. As with any head surgery, there are no guarantees and there are risks, but it sounds like a reasonable course of action if nothing else works.

Best wishes for a successful resolution.

Steve

[Carol]

Thanks, Steve. That's basically what the balance doctor said. The brain does better with a static injury than trying to figure out from moment to moment what the heck is going on. On cloudy days, I am a mess! So I know that some swelling is taking place. A nurse friend of mine helped a lot by pointing out that balance was my main issue before the GK, so probably it is the tumor. Just so you know, I am 63 (a young 63 - can't even believe it when I say it) and I have never had to have major surgery. I have two children and childbirth is about it except for a couple of minor things to be put to sleep for, so I am the biggest chicken ever!! And, why did we have to start with brain surgery? Couldn't it have been a gall bladder or something that I really don't need?  I just want my life back!

[Jim Scott]

Hi, Carol - and welcome ~

I have to concur with my fellow moderator, Steve, and his analysis of your conundrum.  Surgery, like radiation, is a risk.  There is no way to surgercoat that reality, but it is very likely going to become necessary at some point, just as your doctor stated.  Removing the damaged balance nerve would be a long-term benefit. 

I can relate to your concerns about undergoing delicate AN removal surgery because I was 63 years old and had never experienced surgery when I received my AN diagnosis back in May, 2006.  Like you, I'm still a bit flummoxed when I realize that I'm now 'in my sixties'. Me? Oh, I don't obsess over my age and I wouldn't lie about it but it still seems a bit surreal, as if some other 'Jim' is 'in his sixties', not me.  However, even at my 'advanced' age, I came through the surgery (and subsequent, planned radiation) quite well and enjoyed a fairly rapid recovery.  Incidentally, my neurosurgeon never said a word about my age being any kind of factor when he proposed performing the surgery.  Of course, this is my experience and may not reflect your situation but based on the fact that we're approximately the same age, I thought I would offer it for your consideration.  I hope it helps in your decision-making process. 

Jim

[Carol]

Thanks, Jim. I appreciate your thoughts - especially the ones about age. I really feel like I have a lot left to do and I want to be in good health to do it. My apt with the ENT is Monday for the baseline hearing test. I'm hoping he can answer some questions for me. He doesn't do this type of surgery, so it should be a good objective opinion using my last MRI. I'll post what he says later Monday.