Newly diagnosed 1.8 cm Schwannoma

[herbalkate]

Hi, I'm Dianne.  My partner Jim was diagnosed this week with a 1.8 cm acoustic Schwannoma on the right side.  I have copies of his CT and radiology reports and even though I have a medical background, I'm completely lost.  Jim and I are both terrified now and are in the research stage.  There is so much information out there and not all of it relates to Jim's situation, but we're not sure what that situation is.  The doctor explained it to Jim, but after he heard the words "brain tumor," he pretty much zoned out.  I was unable to be there for the appointment, so the only information we have is what Jim can remember from the visit and what we have in the reports. 

Jim's recollection is that the doctor stated the tumor is pressing against his brainstem and cerebellum, that it is probably benign and should be removed by surgery.  He said that Jim would lose his hearing in that ear, that the surgery would take 8 hours, recovery in the hospital would be 3 or 4 days, then 3 months of home recovery and maybe not feeling like himself for up to 6 months after surgery.  He said that radiology is not recommended due to the size and location of the tumor.  The doctor Jim saw is an ENT who took extra coursework in order to treat Schwannomas.  One of the best ENTs; as rated by his peers, in Louisville recommended him.  The ENT works with a neurosurgeon who is board-eligible, but not board certified.  That concerns me.  If he has surgery, I'd like to know that he has the best doctors working on him.  Does board certification really make a difference in the quality of phyisician?  What kind of physician should Jim see about his tumor?  What are the best treatments?  Does anyone know of a good doc in Louisville, Ky?

Jim wants to have radiology, not surgery.  His mother had surgery on her knee several years ago and contracted an antibiotic-resistant staph infection and he's dreadfully afraid that the same will happen to him, only to his brain; not his knee.  I keep telling him that just because it happened to her does not mean that it will happen to him, but it's a great fear.  I also had complications after a surgery; an overdose of morphine that I nearly died from, so Jim has had several traumatic events in his life relating to loved ones going under the knife.

Right now, we're living in fear.  I'm trying to sort through all the info, but the reports are so technical and we can't make heads or tails of it.  If you don't mind, I'd like to transcribe them here in hopes that someone will translate them from medical jargon to English so I can better curtail my research and allay our fears.

Here goes:

CT of the internal auditory canals with and without contrast

History:  Headaches, tenderness, hearing loss in right ear, loss of balance

Findings:  Imaging of the thin axial images of the internal auditory canal were supplemented with coronal reformats to better evaluate the internal auditory canals.  A large homogenously enhancing mass was noted in the cerebellar pontine angle cistern on the right extending into the right internal auditory canal with moderate enlargement of the internal auditory canal, particularly at the porus acusticus.  The enhancing CPA mass is centered on the porus acusticus.  These findings would include a facial nerve schwannoma, but less likely a meningiloma.  The mass measures 1.8 x 1.4 x 1.3 cm.

Impression:  1.8 acoustic Schwannoma on the right.


2nd report
Technique of the brain were obtained with and without IV contrast.

Findings:  The enhancing right cerebellar pontine angle cistern mass was again noted.  This was causing mild impression on the adjacent pons and cerebellum.  The fourth ventricle was normally positioned.  No other intercranial abnormalities were noted.  The vessels at the base of the brain were normal.  The ventricles were normal in size. 

Impression:  1.8 cm acoustic Schwannoma on the right.  Otherwise normal CT head scan.

[Rc Moser]

Dianne, I know what Jim is giong through, less than .1 percent die from this type of tumor and usually all of them are non-cancerous. Some based on their age don't have nothing done, just monitor it growth. I had a 3.7 CM An when it was first detected and I was having severe effects and I was young enough so I had no choice waiting and Ck wasn't an option for me.

In My Opinion (IMO) Based on Jims age it should be watched for growth rate. I also think that Jim needs to find a doctor that done this operation several times if he choises to have the operation. The doctor  will form a team of several doctors to monitor the nerves around this thing so no colateral damage to other functions will be kept low. Based on the size and how long this thing has been growing determines how long an operation can go. Mine was 17 to 18 hours long due to the time it took to peal the tumor remains off the surronding tissues/nerves. This is a time  consuming operation and tests the patiences of doctors to successfully get all of it without damaging the Nerves that surround it Usually the tumor grows off the inner ear which is way you loose the hearing. IMO due to the location, precedure choosen, and the doctors preforming the procedure is how sucessful the operation turns out. This operation you don't want no rookie's preforming it IMO, just too many things can go wrong which IMO directly effect the recovery time and out come of the operation.

IMO Jim needs to start of with Otgology/Neurologlogy Specialist, he will explain options, Jim should be the one to deside what procedure he wants. Usually they will order MRI's which IMO show in more detail where and how big the tumor really is and  it's exact location. For what I read and was told usually a tumor up to 3.0cm can be Gamma Knifed (GK). These tumors when GK can Swell some before they go down for what I was told, so Size does have something to do with it. Jims is on the small side right now. I have read where some as been as big as 6.0 CM's. But, it depends on what it's pushing on.

Jim is going to had to do alot of research on Operations VS GAMMA Knife. IMO operation would be a last resort if Gamma Knife fails to stop the growth or reduces the tumor. Hopefully Jim has some good Insurance to alow him many options. Either way IMO he needs to find a Doctor that has done these procedures many times. If I would of had an option I would of probably got GK, but mine when found was over the recommend size for CK due to I could'nt afford any swelling. Hopefully you will get many responses and Opinions for Jim to make a decision on his treatment. I think the Opinions from others would probably lean toward GK rather than an operation right off the bat.

[Boppie]

Diane,

The size of Jim's tumor will allow more treatment options and especially if he still has some good hearing in that ear.  I agree that you should seek opinions from surgeons who have lots of tumor experience and a non judgmental approach to describing your options.  You might search Otolarygologists/Neurosurgeons in your state.  If you cannot find names there, consider going to Nashville or Michigan.  Insurance coverage might be an issue so check this out.  Very soon you should be getting posts from the good people here with lots of good names and soothing messages.  Don't let stress take over.  Jim is going to be okay.  You two have time to research.

You will need a good MRI with Gadolinium contrast and the report that comes with it.  Make sure your insurance will cover the MRI Lab that you choose.

[okiesandy]

Diane,

Don't Panic!!! I was in the same boat, all I heard was brain tumor. I thought I was dead. That was 10 months ago and I am still here.

The one thing every surgeon will tell you is you have to have surgery, that is the only way to go. Not so.

First thing to do is get a copy of your Jim's MRI's and send them to the House Clinic and let one of the Doctors there contact you and talk to you about the location and size. I sounds like who ever read the MRI's does not have a lot of experience with AN's. Believe me if they could tell which nerve the AN was on there would be a lot less surprises when surgery is done.
The great man Dr. Brackmann told me there is no way to tell until you get in there. At HEI the want to do surgery.

Another option for you is to check out the Cyberknife Patient Support msg. board. There are doctors on there that answer all sorts of questions about AN and other tumors.

I was all set to have surgery and then things kind of fell through and by the time I could reset the date I had changed my mind. I had Cyberknife with Dr. Clinton Medbery who answers questions on the CK site. I finished this treatment last week. I am a confirmed CHICKEN WOMAN and was scared spitless of the surgery. Also scared to have radiation because of all of the missinformation out there. If you send your MRI's one of the doctors on the CK forum they will put them before a panel and the panel of radiation oncologist, neurosurgeons and others will review them and give you an opinion as to how it should be treated. I did not see a neurosurgeon until just before my treatment. She said she no longer does surgeries as a first line of treatment when they are small. In her opinion and the opinion of the neurosurgeon who is in her office the smaller AN's will be treated with radiation other than surgery in the future. These doctors were both confirmed and convinced that surgery was the only way to go a few years ago. Find someone who does both.

Everyone
 except my vet offered to remove my AN. The only reason he did not is because I didn't telll him I had one. My first neurotologist said he had done 20 to 30 such operations over a ten year period and they he was well quallified to do mine. No way. Yes, board certification does mean something. It means the person cares about his/her professional level. A lot of hospitals will not let a non-certified physician practice at their hospital after 5 years if they are not certified. We found this out when my husband had cancer and we almost had a non-certified surgeon do his surgery. Then a doctor friend found out about my husband and sat him down and had a talk with him about qualifications and Board Certifications.

If you have spacific questions please email me and I will answer as honestly as I can. You have time. Mine was fast growing and most are not. I waited 6 months for a 2nd MRI and then had CK done 3 months later. I though in the beginning someone had to be nuts to even thing of radiation because the dr. told me so. Research with an openmind and keep your research confined to recent years and not back 15 years or so.

Blessings

Sandy

[herbalkate]

Thank you all for your advice and words of encouragement.  I found a local brain tumor support group; The Michael Quinlan Brain Tumor Foundation, and Jim visited with the founder, Kathy Quinlan yesterday.  She gave him tons of information and had such a positive and nurturing spirit, so Jim is feeling a little better about things.  He now has brochures on the Gamma Knife, radiation therapy, surgery, and all the other options for treatment.  She also gave him two books; one on mind/body/spirit connection called Your Body Believes Every Word You Say and one with inspirational pictures and quotes.  She also included two music cds; one with relaxing piano music and one from a local brain cancer survivor named David M Bailey who was told he only had six months to live and who has stayed around now for 16 years.  Mr Bailey gave up his job and decided to do the things he loves and he loves writing and playing music.  His cd is called Love the Time.  She also gave each of us a gray brain tumor support bracelet that says Sharing Hope and gray brain tumor support ribbon pins.  She also included information on nutrition, alternative treatments, supplements, support group info, online resources, foundations and treatment centers, etc.  It was such a massive amount of info and she put it in a canvas bag for him.  Jim called me after he left the foundation and sounded so relieved and like a big weight had been lifted from him.  He's still having difficult time, but is feeling a little lighter about it.

He has an appointment on Friday with the oncologist/radiologist on who treated his mother for breast cancer.  He is supposed to be a very good doc and people visit him from all over the state and surrounding states.  If the doc doesn't think he'd be able to do the treatment, he can refer him to someone who can.  The nurse mentioned referring people to the University of Kentucky in Lexington for the Gamma Knife, so I don't know if there is one here in Louisville.

Can anyone tell me whether or not a breathing tube is required for surgery, if that is the way we have to go?  Jim woke up once during a procedure where a balloon was inflated in his esophagus to stretch it and was traumatized by having something down his throat.  I woke up during an endoscope before and it is terrifying; you really feel like you're choking to death and can't breathe.  Jim's really nervous about waking up with a tube in his throat. 

I forgot to mention Jim's age and the location of the tumor before.  He's 36 years old, the tumor is on the auditory nerve on the right side, lying next to his cerebellum and brainstem.  He has lost 20% of his hearing and has lots of tinnitus and hears other groovy sounds all the time.  He says that it feels like there is pressure in his ear and that sometimes when people talk to him, it sounds like they are muffled, like they have their hand in front of their mouths or are talking through a towel or scarf.  His other symptoms are dizziness, uncoordination, balance problems, confusion and anxiety.  Jim is a very big fan of music and does not want to lose his hearing.  I know that no one does, but it would just kill him to not be able to listen to the radio, hear me talk, hear the cats and all their noises or listen to his music.

Jim's having a rough time right now.  My 19 year old niece was killed in a traffic accident Thanksgiving weekend, he was diagnosed with the brain tumor this last month and his grandmother died at 4:30 this morning.  We'll be out of town for the funeral on Friday and Saturday, so I may not be online much later this week.  We'll have to travel 2-1/2 hours each way on Friday and Saturday and since I have fibromyalgia and chronic fatigue syndrome, I might be too exhausted and too sore to check mail or the board.

Thanks again for your help.  If anyone can translate the radiologist report for me, I'd really appreciate it.  There's just too many technical words for my old brain to understand.

[Boppie]

I am sorry Jim has had so many stresses recently.  Dealing with his health issue is an extra full plate for both of you. 

If Jim has surgery for his tumor, his anesthesiologist will need some way to keep the airway safe and open.  But Jim and his doctor will discuss his fears about the tube and the balloon you describe.  Good and caring doctors know that a patient is concerned about the details.

The tube is put in just after the patient is to sleep, then it is taken out when you hardly remember what day it is.  I don't remember seeing or feeling the tube, but I know it was there. After Jim gets comfortable with a doctor who is willing to sit down and talk, the fears and "what ifs" will dissolve.

Does Jim use the computer?  We'd like to welcome him on the forum.  He can get support here.

[Rc Moser]

Sorry about all the greef you and Jim are going through. If remember Correctly he will have to have the breathing tube if he has the operation, due to unknown amount of time he will be under. IMO you or him shouldn't of wake up during your operation's. Uaually the breathing tube is removed before you wake up. I to was also concerned about this also. if your bearthing is fine they will remove the tube before you wake up for what I can remember. I know this is problem for patients after heart operations due to the tubes have to be left in a day or two depending on recovery time. The Most painfully thing for me was when they pulled off the spinal tap tape. felt like they were skinning me. But I'm a woos.