Brain tumor diagnosis....

[FLyellowdog]

My adult son was diagnosed yesterday with a vestibular schwannoma benign brain tumor. Surgery is schedule for next Thursday at Vanderbilt Hospital in Nashville. He will permanently lose the hearing in his right ear and possibly have some facial nerve damage as well as issues with balance. Just wondering if anyone here has had this?

[ddeclue]

1. If it is benign, why do they need to remove it?

It sounds like it's a lot of risk... are there other consequences if they leave it in?

:shrug:

[FLyellowdog]

6. Yes, some very great risks...

Most of these tumors are relatively small...not his...3 cm X 4 cm and it's begun to press on areas that will eventaully cause spinal fluid to leak out...plus he's already having headaches and blurred vision which means there is too much pressure building up in that portion of the brain (cerebellum).

He's apparently had it for at least 10 years...very slow growing. But it's too large to be treated with medication and/or radiation (gamma knife) which of course would have been less invasive.

Only a handful of doctors do this type of surgery. His doctor is the head of the brain tumor department at Vanderbilt and is a published specialist in the field so I'm thinking he's in the right place. I hope so anyway.

[ddeclue]

9. I wish you good luck and hope it works out...

:)

[FLyellowdog]

12. ty

[aquart]

21. May all good luck accompany with his expertise.

Which won't stop you worrying for a second. During this agony, and it is, no matter how much you thank God for the benign diagnosis, take YOUR vitamins, keep chocolate handy, have a pleasant smelling soap for when you cry in the shower so nobody sees.

You both need to come thru this.

[FLyellowdog]

29. We're soooooo grateful that it's almost certainly benign.

The 15+ hours of surgery will be horrendous, but he's at a great hospital.Yes, I'll have tons of chocolate handy...and will rest when I can. Thanks for your advice.

[Fire1]

49. Stay positive and this too shall pass. All the best.

[FLyellowdog]

50. :)

[pnwmom]

23. It won't metastasize, like a cancerous tumor. But it could still grow, and

put increasing pressure on the brain. Whenever possible, doctors remove benign brain tumors or treat them with non-surgical methods (like the gamma knife) to shrink them.

[FLyellowdog]

30. That's exactly what the doctor said.

Unfortunately the tumor size is too large for non-surgical methods. If his primary doctor had ordered an MRI a few years ago when he started having headaches and blurred vision, they would probably have found it when it was smaller. But he's had this thing for maybe 10 years or so, so who knows? Thanks for your thoughts.

[pnwmom]

43. I'm so sorry. The "what ifs" and "if onlys" must be awful to live with.

Remember Christopher Reeve after he had his horse-riding accident? He and his wife must have had to battle those thoughts every day -- and yet they went on. How, I often wondered -- but they went on.

As scary as it must be for you to have your son go through this, I hope you can focus on the fact that your son's in the right place now and he's getting the help he needs.

:hug:

[Fire_Medic_Dave]

54. I had a friend that died of a benign brain tumor.

It grew and caused a blood vessel to rupture.

David

[elleng]

2. Peace

:hug: :hug:

[FLyellowdog]

10. ty

[uppityperson]

3. I haven't, but good luck to him.

Seems that one is a tumor that causes problems by pressure, by being there, but isn't one that spreads elsewhere. Having your kid have a tumor is very scary. Good luck to him, and hang in there.

[FLyellowdog]

7. ty

[bkkyosemite]

4. My ex daughter in law had it and was probably born with it. It left some nerve damage

because of where it was located. This was many years ago. It is very good that they can tell now exactly what areas will be affected. She is very well. Best wishes for the surgery and a speedy recovery. Prayers sent your way for your son and your family.

[FLyellowdog]

11. We're hoping for only minimal damage. ty

[NYC_SKP]

5. Our thought go out to your family.

:grouphug:

[FLyellowdog]

8. ty

[JSK]

13. So sorry to hear that

I can't imagine anything much harder for a parent; I bet you would trade places with him if you could. Hope the surgery is a great success and that he has a speedy recovery. Godspeed to you and yours.

[FLyellowdog]

14. I'd take his place in an instant.

I know that illness is a part of life, but I hate that my child will suffer for any reason. We'll be brave, but it's going to be soooooo hard. ty for your thoughts.

[Ms. Toad]

16. You and me both.

My bigger medical fish to fry (re: my earlier post) is my daughter - she was just diagnosed with a chronic progressive liver disorder. I'd trade with mine in an instant, as well. Good luck to your son.

[FLyellowdog]

31. So sorry about your daughter. Stay strong.

[Ms. Toad]

40. Thanks - you too! n/t

[myrna minx]

37. I am so sorry. I can't imagine how hard it must be to have a sick child.

:hug:

[Ms. Toad]

39. It's the pits - and freshman year at a tough college is even worse.

But - there's a little hope on the horizon. One small study found a drug that halted the disease progress in all 14 participants, and within a decade they expect to be able to grow your own replacement livers (which would eliminate both the wait for scarce organs and the problem with rejections).

In the mean time, we're hoping to be able to drop enough classes, and take enough incompletes, to avoid a medical withdrawal for the semester.

[FLyellowdog]

62. Colleges will usually work with their students who have special

health needs. Again, good luck and stay positive. :hug:

[Ms. Toad]

73. We're hooked in.

The college is being very helpful. We've been in pretty much constant communication with them since late December when we realized something serious was going on. I talked to three officials today (the last time for standard withdrawal from classes is Monday, and the deadline for financial aid applications is coming up).

No matter how helpful the college is, freshman year is really hard - and adding this on top of everything everyone goes through is the pits.

Hope your son's surgery goes well.

[Mz Pip]

27. sending my good thoughts

your way. Maybe the surgery be successful and recovery quick.

[Ms. Toad]

15. Haven't had it - I hope

Been tested for it, but unfortunately the ENT doc used a less than gold standard test, my GP ordered what he thought was the gold standard but didn't get it quite right. If I have one, it is small - and they are very slow growing. I'll get tested for it using the gold standard test this summer (the ENT has now agreed to order it - but I have bigger medical fish to fry at the moment).

Anyone who has one-sided hearing loss or one-sided tinnitus (ringing in the ears) should be checked out. Apparently ears lose their hearing at the same rate (and have approximately the same amount of tinnitus) - who knew - I figured they were like eyes and could have very different hearing loss.

The information you provided in a post below matched my own. I was going to suggest a second opinion, but with the non-hearing symptoms he is already experiencing it is probably too large (or in a bad location) for the paths that can save hearing.

Good news is that it isn't cancerous. Just not enough room in the brain for it to stay there.

[FLyellowdog]

28. Thank you so much for this information.

Good luck with your issues as well. Modern medicine is wondrous...I know they'll do everything they can. It's definitely in a place where they can't save the hearing. That's sad because he's such a music fan and even works in the business. But his boss told him that things sound better in Mono anyway. Who knew?

[Smarmie Doofus]

17. No. Scary stuff. Thankfully it's benign.

But it appears from your description that the need for the procedure is plain... so at least there's not much agonizing to be done over decision-making.(That's sometimes the hardest part) And he appears to be in the most capable hands.

He will compensate for the hearing loss. Hopefully the collateral damamge will be minimal. Good luck and keep us posted.

[ClayZ]

18. Our wishes for a speedy recovery.

[Hekate]

19. Blessings to you all for strength and a speedy recovery...

:grouphug:

Hekate

[Fumesucker]

20. Best wishes to your son and your family..

:grouphug:

[democrank]

22. My best to your family

and special thoughts for your son.

[pnwmom]

24. Vanderbilt is an excellent hospital. I know there's nothing worse than

being concerned for your child's health -- no matter how old your child is -- but your son is in a good place. Sending you and him my thoughts and prayers.

:hug:

[crim son]

25. I had a close friend with the same tumor, but it was caught

early and treated with radiation, I think. She was terrified before the procedure but it's been fifteen years and her recovery was quick and complete. I wish he same for your son.

[flyarm]

26. I am so sorry your son will have to go through this..my heart aches for him and you!!

May god bless him and protect him through the surgery and afterwards..
I am not a religious person, but I will pray hard for your son and your family.

My hubby and I lost a couple of dear, dear friends with maligant brain tumors..

Thank god your son's is benign.

Sending all the love I have to your family, and i will surely keep you in my prayers!!

fly

[Christa]

32. My best wishes to you and your family

As a mother, my heart goes out to you.

:pals: :hug:

[FLyellowdog]

63. Our children NEVER stop being our children.

:hug:

[Christa]

66. You are so right there!

We are legal immigrants, and our oldest had to leave because he could not get a visa. The day he left a piece of my heart broke off and went with him.

[FLyellowdog]

67. I hope you get to see your son again soon. I'm so sorry he had to leave.

[Christa]

69. Thank you!

I hope so too. We try to see each other once per year - I missed out seeing him grow from a teenager to a young man.

[spinbaby]

33. I work with a man who had this

It was treated with radiation so he avoided surgery altogether. He barely even missed work for the treatment. He's still deaf in one ear, though.

[FLyellowdog]

51. So many have had this...but thank goodness for techniques that can take care of it.

[FLyellowdog]

34. Thank you to EVERYONE who is posting here.

Even though we don't know each other personally it seems as though we do. It gives me strength hear your stories, know you are thinking of us and sending us your personal power. :hug:

[libnnc]

36. Love you guys.

Been thinking about him all week. :grouphug:

[FLyellowdog]

46. Sweetie...

we'll get through it....we don't want this, and I'm mad as hell. But we'll get through it. :hug:

[myrna minx]

35. My heart is with you and your family. Thank goodness it's benign, but that doesn't

alleviate the stress of the surgery. May he have a speedy recovery. :hugL

[FLyellowdog]

52. No, it's too large and pressing on nerves. :(

[carlyhippy]

38. My prayers are with your son and your family

Carly

[fight4my3sons]

41. my sister had a benign brain tumor removed about 10 years ago

It was discovered when she had a seizure while watching tv one night. She was 25 at the time. She had never had a seizure before, but had been complaining of headaches for a few weeks. She is an accountant, so thought it was from stress. She had surgery to remove the tumor they found a few weeks later. The surgery was done at Mt. Sinai in NYC. They could not remove all of the tumor because it was located in the artery that runs between the two hemispheres of your brain (I'm not sure if I am wording this correctly) and she was losing too much blood. After the surgery she lost control of the right side of her body and had physical therapy as well as occupational therapy for a couple of months. She also had residual seizures and takes medications to control them. I am happy to say that since the surgery she has fully recovered, married and had a gorgeous baby boy. She had just announced that she is pregnant again. She goes every six months for an MRI to monitor the remains of the tumor that they could not remove to make sure that it is not growing. So far so good. I hope that the surgery is a success for your son. My sister found an online support group on Yahoo that was helpful to her. Best wishes to you and your family. :hug:

[FLyellowdog]

53. How glorious...a full recovery and a full life. :)

[LisaM]

42. My sister had a benign tumor (acoustic neuroma) removed years ago

She lost the hearing in one ear, but did not have any facial nerve damage. I don't know how similar this tumor is to hers, but it hasn't slowed her down at all and it's never returned.

[FLyellowdog]

55. Sounds like the same thing...they sometimes go by different names though.

I'm reading about so many who recovered...it lifts my spirits. Thank you.

[LisaM]

70. She's on DU

1gobluedem. You can PM her about it.

[DainBramaged]

44. I have had two very large Pituitary Adenomas removed in the past nine years

and a third which has to be shrunken with a Gamma knife since two brain surgeries is two too many. I am blind in my right eye form the last one in 2007 which hemorrhaged before surgery and damaged my optic nerve and my pituitary then stopped functioning from the damage. I take a multitude of drugs and hormone replacements to survive each day since my thyroid gland also gave up the ghost after the last surgery. The side affects are not as minimal as I would like, but life is tolerable. Being an exception to the rule with these type of tumors (extremely rare in older men, and regeneration even rarer) I feel yours and your son's pain.

My prayers and best wishes go with you both. If you'd like to talk to me about my experience, PM me and we'll talk. Support is always there for those of us in the brain club.


:hug:

[roguevalley]

45. I am glad they can treat it. they could not treat my mother's aneurysm

that killed her. totally different thing I know but I want you to know the intensity of my best wishes for you and your son. He will revive and become even better for this, I tell you. I wish you both only hope, health and goodwill.

RV

[FLyellowdog]

56. Thank you so much and I hope for your continued improvement.

[FLyellowdog]

58. thank you and I hope for your continued improvement of health.

Please remove because I double posted....sorry

[babylonsister]

47. Come here, you.

Here's a huge hug for you and your son.{{{{{{{:hug:}}}}}}}

I have no advice, but you are both in my thoughts, FLyellowdog. :hug:

Please keep us posted.

[FLyellowdog]

59. You people are so comforting. I can't thank you enough.

:hug:

[Butch350]

48. All My Hopes!

[FLyellowdog]

60. ty

[Fire_Medic_Dave]

57. My thoughts and prayers to your son, you and your family.

Vanderbilt is a wonderful hospital.

David

[FLyellowdog]

61. We feel very fortunate that he lives near there. ty

[kaygore]

64. I'll keep him in my prayers.

[kaygore]

65. Did you see this article about stem cells and deafness?

Although not exactly addressing your son's type of deafness, I think there is hope that stem cell research might lead to regrowth of nerves:

http://news.bbc.co.uk/2/hi/health/7974795.stm

I had my paranoid salivary gland removed. I was warned that many facial nerves could be adversely affected and that I would lose the feeling in my ear lobe. Over time, it turned out that the nerves were not damaged to the point where I would lose feeling--I have no remaining nerve damage.

Although this is rare with the type of surgery I had, it happens and could happen with your son. It takes as long as a year to determine the extent of nerve damage.

My point is to tell your son that there is hope.

[FLyellowdog]

68. Yes, I did.

I don't know whether such a treatment would work in this case, but science is certainly going to make giant strides now that stem cell research can go forward...just another reason I'm go grateful for our President's stand on the issue.

I'm glad your surgery went well and left no damage to the nerves. So far most of the people we've heard from with my son's particular type of tumor have had no permanent damage as well. That makes us hopeful.

Thank you for posting.

[kaygore]

71. Caution your son to be hopeful about the nerve damage

I have damaged nerves on several occasions and each time it took about a year for the nerves to bounce back from the trauma. This is also what I have heard from others too.

[FLyellowdog]

72. Thank you, I will.

[Forkboy]

74. It's sounds horrible, but thank Goddess it's benign.

Best wishes to all of you. :hug: