What to do??? Son also just diagnosed with meningioma

[Glenda]

Hi all!

It's been awhile since I have posted on here.  I do lurk in and out and check up on you all  I have been on wait and watch for 3 1/2 years.  I recently had my annual MRI and my AN has  grown to 8.5 mm, still small but my local ENT says that as it is continually growing, he advises I have treatment.  He advises surgery. I have sent this most recent MRI to HEI and am waiting to hear their opinion.  I have also been on the cyberknife forum and it has been suggested that I should have a 70% chance of keeping hearing with cyberknife treatment and I have been told a 0% chance with surgery because of the position of the AN deep in the canal.  I have been leaning toward cyberknife since getting this info but am waiting to hear what HEI tells me.
My husband had surgery for a trigiminal neuralgia a couple of months ago (I also ask his neurosurgeon his opinion on my AN and he advised radiation) and found out yesterday that my son has a 1.9 cm meningioma....That's three of us with brain issues......makes you wonder if any of this could be related.....  As a friend told me we are keeping the Dr's in business    better to laugh than cry..
I have been reading so much I feel my eyes are crossed and my head is numb...(of course I have been having some wonky head lately, could be that)    Still trying to decide what to do in my case, dealing with my husband and his recovery and then my son gets diagnosed.....Am feeling really frustrated at this point     Sorry to vent to you all but you have always made me feel better!  Thanks for listening!

Glenda

[ppearl214]

Glenda

First and foremost......       ..... you have been SORELY missed! 

I am so sorry to hear you all are purchasing all the dr's dream homes and cars, but know that you all are also doing what is best for each situation. I'm so sorry to hear that these head issues have become a "family affair".

Many here of us that had CK done, as you know... and if I can be of help in answering questions (apart from my many posts here that I have shared my AN/CK journey), my inbox is always open.... me thinks you know that.

Just remember...... "Somewhere, over the rainbow.....".... to my favorite good witch! 

xo
Phyl

[Kaybo]

Glenda-
Hey girl!! So glad to hear from you but SO SORRY for all that has been happening!! OMGoodness - how absolutely awful for you...I'm so sorry to hear about your husband and now your son!  When did your husband have surgery? How is his recovery?  Will your son use the same Dr?

I still have your number if you want to chat!  You & your family are definitely in my prayers - try to get out & get some fresh air and exercise and TAKE CARE OF YOU so you can then tend to everyone else!

K 

[CHD63]

Oh Glenda .....

Life just is not fair sometimes.  But three of you in one family dealing with brain issues has to be overwhelming.  I can see why you have crossed eyes and a numb head.

First, and foremost, do not neglect your own health while dealing with your husband and son.  It would be easy to put your own concerns "on the back burner" but you cannot afford to do this.  It will all work out, but just be mindful of what is going on with your own body.

Many, many thoughts and prayers.

Clarice

[Sheryl]

Hi Glenda - I, too, lurk in and out.  I can fully understand and appreciate what you are going through.  You will get through it - easier said than done, but I've been there, done that. 

Dealing with two parents with Alzheimer's, my W&W 9th cranial nerve schwannoma (like an AN but on another nerve), breast cancer seven years ago with chemo and radiation at the same time hubby's meningioma was found.  We were both bald together.   Hubby's brain tumor decided it liked its home in his head so recurred two more times.  This is unusual and more so because it was a grade 2, atypical tumor.   I worry about our son's health with such a complicated family history. 

As Clarice mentioned, and I'm sure others will agree, please take care of yourself.  I went for some counseling - found a great psychologist and even though I was against it, I occasionally took medication for anxiety and insomnia.  Sleep and eating healthy are very important.

Take a deep breath and keep us updated,
Sheryl

[Jim Scott]

Hi, Glenda ~

Wow, a familial trifecta of brain tumors.  I'm mystified as to what could cause this, other than sheer bad luck.  You'll probably never know so I wouldn't obsess over trying to figure it out.  You have enough to deal with as it is but your frustration and anxiety are completely understandable and no apologies for venting are necessary.  We understand.

I'm not a doctor and cannot recommend any procedure to anyone but with a tumor less than 1 cm, CyberKnife does seem like a prudent option for you.  I'd be interested in learning what the doctors at HEI recommend. You'll be in the prayers of many and as always, never forget that you're among understanding friends here so please visit us as often as you can.  Thanks.

Jim    

[Glenda]

Thank you all so much!!! (as I sit here mopping tears)  You are all the BEST!!! Phyl, you always make me laugh    Thank you!!  Indeed keeping the Dr's in homes and cars!!  and I am looking for my "over the rainbow" 
Kaye, I also sneak into your curleygirls blog and cannot believe how your girls are growing and all so beautiful!!  You are one of the strongest people I know and I am always in awe of you.  You are exactly right....I need to get out and walk and take care of myself, I have really put myself on the back burner and I am so out of shape....Thanks for the encouragement and I will try to do better!
Dear sweet Clarice, you too have gone through so much and I so appreciate you chatting with me when I was going through the ordeal with my husband.  You certainly made us feel better.  He had some issues with swallowing in the beginning but is doing much better, just slight issues now.  Thank you again and I am going to try to look after myself....thanks for the encouragement also!  Hope you are healing and doing well from your recent surgery!
Sheryl!!!  Oh my goodness!  You have really been through so much!!  Thank you for sharing with me...I know I'm not alone....I will be praying that your family has better health!  I am not sleeping good...between the memopause hot flashes and the stress, sleep is hard to come by...I may have to get some help too though like you I don't like to depend on meds...
Dear Jim, thanks as always for your comments!!  I'm trying not to obsess over the brain deal but my daughter is I think....she is concerned about her and our other son...she said 3 out of 5 are not good odds    though I think it is just coincidence, at least I think I do    Thank you for being so understanding!  I will let you all know when I hear from HEI.

I am looking right now at Dr Gagnon in Fredrick Va for cyberknife....I have read that he has extensive experience...That is not so very far away and is a beautiful area that we would not mind visiting.  Any thoughts or suggestions?

Thank you all again and it's nice to come home!!

Glenda

[Glenda]

Hello fellow ANers....

I just got off the phone with Dr Derald Brackmann.  What a nice man he is!  He told me that he agreed totally with Dr De La Cruz, that my acoustic neuroma was deep in the canal and that I would certainly lose all hearing with treatment.  He said it is still relatively small at 8.5 mm.  He advised he also used gammaknife and that he had treated over 100 cases with gammaknife but that as mine is at the very end of the canal that there was no way that I would save hearing no matter which treatment I chose.  He said that the AN is up next to the cochlea and the cochlea is very sensitive to radiation and that it would absorb the radiation so that if it didn't get the nerve it would the cochlea.  He advised that he would wait and watch another year as I still have a good amount of hearing.  He said treatment would not be that much different at 1 or 2 cm.

I had almost wanted him to tell me I needed treatment......I was at the point of wanting it over (but then I guess it never truly is).  I DO WANT to keep my hearing...so I think what he is telling me is probably for the best.  I know I can live a good life with SSD but would still like to keep what I have as long as I can.  I kind of freeze when I get the Dr on the phone so I forgot to mention to him that the fatigue is getting worse.  That's the only real issue that has seemed to change.  More dizziness and fatigue.  Though the dizziness has not got to the point where it is unmanagable.  He did tell me to call if my symptoms got worse or if I needed him.  So my fellow matey's!!  Arr Arr......what are your opinions???

I also met a fellow ANer at work today.....I felt so bad for her.....She had surgery with a neurosurgeon in Florence SC...no otarynologist!  He did her surgery 3 years ago and did not get all of the lesion and did not send her for radiation.  Her symptoms came back as it started growning again.  She went to Columbia for gammaknife and now has eye and facial nerve problems.  She is also having dizziness.  No one has given her any facial exercises nor sent her to an opthalmologist, most likely because she has no insurance.  I urged her to check on Medicaid, she said she had but that they told her she had to be on disability....(don't think that is true) told her to try again....  I worked for many years with optometrists so advised her to try patching the good eye in order to force her bad eye to work since it is lazy and wandering but that she really needs to see a Dr. as I am not one.... I also gave her the address for this group and told her to please sign on here and that I'm sure some of you who have had these symptoms after radiosurgery could advise her of maybe some facial exercises that may help.....It's terrible that a person can't get good treatment because of lack of insurance.  I feel very blessed!  Hopefully she will join this group!  She said she felt like God had sent her into the office today because she felt so better after talking with me...at least I understood.  I gave her my name and number to if she wants to talk.... She has felt so alone....I hope she joins in.....

Thank you all again for the support!
Glenda

[Sheryl]

Hi Glenda - thanks for the update and how nice of you to befriend that woman although we do have a bond with other ANers. 

Sounds like you understand all your opinions and even though W&W can be frustrating (just get that thing out of me or kill it), it sometimes is the best way to go for some - especially if you can keep your hearing intact for awhile longer.

Stay well and keep us posted.
Sheryl

[Kaybo]

Glenda~

HEY!!  Well, I guess that basically you got good news...even though you thought you were about ready for treatment.  Even though it is definitely "a life worth living" with SSD, it's really nice NOT to be SSD as long as you can!!   

So glad you are back!!

K   

[CHD63]

Hi Glenda .....

I would have to agree with Dr. Brackmann to enjoy the hearing you have for as long as you can.  But I would also be mindful of any increase in your symptoms ..... especially any additional hearing loss or facial twinges of any kind.  The fatigue factor is so difficult to pin down because it can be caused from so many things.  If you notice any new or increasing symptoms, give him a call.

I feel like I had an extra bonus of three years of at least some hearing in my AN ear so I am grateful for that now that I am SSD.  I am so looking forward to "hooking up" my Ponto Pro two weeks from today!  That is always an option for you when the time comes.  Dr. Friedman put the abutment in at the same time as my AN removal translab surgery.

Best thoughts.

Clarice

[Glenda]

I just got back from NC where my son lives.  He saw a Dr Ellis, a neurosurgeon at Wake Forest Baptist Hospital in Winston-Salem.  Dr Ellis advised him he was not sure if his tumor was a meningioma or schwannoma, it is against the brain stem with a "tail" at least that is what I understand he told them....wish I could have seen the MRI also....  He advised him to go with Gamma Knife.  My son at this point wants it out.  (he is having headaches, deafness and dizziness) He is seeing another neurosurgeon Dr. John Wilson at Wake Forest, appointment scheduled for 8/11.  He had several friends go along with him as well to the doctor, he has a wonderful support group with his friends.  After having found my AN 3 1/2 years ago, I shared some of my knowledge with him when he came out and advised what the Dr had said.  I advised not to rush and to make sure what "he" wanted to do and make sure he was comfortable with the Dr.  I also advised that I would like him to send his MRI to HEI for their opinion....I told him there was a good Dr at Duke also....I want him to look into options and not think he has to go with this facility because they are close....I know they have a wonderful reputation with gamma knife, haven't heard of anyone having surgery there... anyway I think they all thought I was being pushy...they were saying they would help him rush up his appointment and try to take care of this....I know they are trying to help and I'm so thankful he has such good friends but I felt like they thought bad of me.....he is my son and I have read and experienced so much in these past few years....anyway I am afraid he will rush into surgery and not take the time to research.....I feel so helpless....He is so scared and I am so scared for him....it is much easier to handle my own AN....you shouldn't have to go through this with your child....Am I being a bad Mom? (maybe I should keep my mouth shut) and had anyone heard of anyone having surgery by Dr Wilson at Wake Forest?  Thank you all again for your support!!

Glenda

[Kaybo]

Oh Glenda - I am sorry that you feel this way. NO!! You are NOT being a bad mom - you are just trying to share the knowledge you have come across with your son. It is very important to have good friends and a solid support group...direct him my way...& let him talk to someone that (even though I know I had no choice) rushed into all of this!!

More later...on phone...

K 

[Jim Scott]

Glenda ~

Thanks for the further update.  My only comment regarding your son is that I know from my five years of reading posts on these forums that many AN patients who were too anxious to "get it out of there" regretted the decision, later due to post-op complications they overlooked, never realized were possible or thought wouldn't happen to them.  Even the best doctors can't guarantee complications won't arise from AN surgery.  As we know, all surgery carries some level of risk.  AN surgery is demanding and carries it's own risks that can't be ignored.  Many AN surgery patients do just fine - I'm one of them - but again, it's nothing to be hasty about.  If your son is bound and determined to undergo AN removal surgery, he should choose his surgical team very carefully.  This is not a simple procedure and requires experience and skill on the part of the surgeon and everyone on the surgical team.  My neurosurgeon wouldn't even allow Interns or Residents on his AN surgical team.  He felt that he needed the very best people he could get.  He was proven correct because my AN de-bulking surgery was a great success (no complications).  I mention this only to emphasize the point that the experience of the surgical team is crucial.  I trust that your son realizes this  and acts accordingly.  He can always register and review some of the many posts on these forums that relate post-op problems some AN surgical patients endure.  A few have flat-out stated that they wish they had been a bit more cautious in opting for AN surgery.  We don't want your son to end up feeling the same way a year from now so please try to convince him that this is very serious surgery and not like having a gall bladder removed, where you are out of the hospital in a few days and back to normal in a few weeks (or less).  The fact that you are (rightly) concerned for your son's health and quality of life is admirable.  Although the final treatment decision is his, alone, your gentle advice is likely not wasted.  Never feel guilty for doing the right thing, even when it doesn't appear to be appreciated.

Jim

[Sheryl]

Glenda - my eyes filled up reading your recent post and you are so right - "it is much easier to handle my own AN -- you shouldn't have to go through this with your child"!!  My heart goes out to you BUT you are not being a bad mom and DO NOT keep your mouth shut.  Do you think your son would be upset if he read some of these posts?  Maybe you could print out the posts that you feel are most relevant that may help him.  We've been lucky, our 39-year-old son has had some minor surgeries, but no matter what their age, you always feel helpless.  As my mother says (and at age 65, I am so thankful to still have her) - "you never stop worrying about your children".

Please keep us posted,
Sheryl