Author Topic: Update on Joey Richards  (Read 10121 times)

deea

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Re: Update on Joey Richards
« Reply #15 on: October 01, 2007, 09:50:03 pm »
Hi there Martha!

I am sooooooo glad it was a type o on my path report and I am NOT dealing with a tumor as large as the one you and Joey had.  The little guy I had was more than enough for me.  I am back sliding a little, should have know everything was going too smoothly.  I had had 6 visiits to the ER.  I am becoming  frequent flier.  The docs. can't figure out whats going on....the best bet is that the rapid regeneration of the the nerves is too much for my body and it goes into shut down mode to get a little rest, then everything is ok until the next time.  We particuliarly like fridays and mondays!  No more driving until we get the med thing figured out.  Please contiue to keep me, and my family, in your prayers.  This is tougher than just after surg.

So sorry Martha, did not mean to steal your post.  Welcome to one of the best forums on the web.  What a great group of people.  I can't wait to have Joey meet them.  I would love to meet fof someday.  What a treat that would be.

Take care,  I hope you are doing well.

Claudia

MStout

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Re: Update on Joey Richards
« Reply #16 on: October 02, 2007, 05:29:28 pm »
Kathy,

Thanks for the welcome!
I had my six month MRI today, and the doctor says my AN has shrunk a little bit.  The last I heard it was 3.7 CM, so it has some shrinking to do!
 I keep checking here every day for updates on Joey Richards -  hopefully we'll hear somethng soon.  Thanks to those who keep us updated!

Martha
Martha

MStout

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Re: Update on Joey Richards
« Reply #17 on: October 02, 2007, 05:35:14 pm »
Sorry Claudia - I didn't see your post until after I had posted!  Thank you too for the welcome.  I hope things get better for you!
You didn't steal my post - I'm just glad to meet others out there who have what I have.
My sister said she recognizes alot of people here; she came here in December when I had a progammable shunt put in.  She said a lot of her questions were answered here!

Martha
Martha

Obita

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Re: Update on Joey Richards
« Reply #18 on: October 02, 2007, 07:21:45 pm »
Martha:

Any chance your sister is Mindy?  I did not put two and two together until your last post.

If you are Mindy's sister, HOW ARE YOU!!!  We were worried sick about you!!!  Did you have surgery, radiation or both?

Tell your sis I said HI from Minnesota, Kathy

ps:  if your sister is not Mindy, oops, but tell us about your treatment etc....
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

4cm in Pacific Northwest

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Re: Update on Joey Richards
« Reply #19 on: October 02, 2007, 07:27:33 pm »

Welcome Martha!  :)

We need more reporters like Joey to get the word out about AN ... just over 4 months ago I had never heard of it - heaven knows how to pronounce “vestibular� & “schwannoma�.

Glad to have you both on our “writing teamâ€? … it won’t be long before you become familiar with us all. (Caring supportive bunch here I have found) So far the one who has me laughing the most (we so need to maintain humor to remain sane) is Captain Deb  ;D ::)(Arby dar!) The AN forumers are kinda like family...

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

MStout

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Re: Update on Joey Richards
« Reply #20 on: October 03, 2007, 07:41:29 am »
Hi again,

Yes!  My sister is Mindy!  That was like Twilight Zone when you "said" her name!  That's so sweet that I people I've never met were thinking of me during my rough time!  I will tell Mindy "Hi" from Kathy in Minnesota.  Thanks for being there for her when she had questions and needed support.  I've learned that being the loved-one of a 'victim' is a lot harder than actually being the 'victim'...you feel so helpless.

I had surgery in November 2005 and FSR a year ago.  The shunt was put in December 2006 when they found hydrocephalis. I was in the hospital for over a month because I also developed pneumonia and a blood clot (venous thombosis). 

Thanks for the welcome 4.  I like your name.  My AN was 4.1 when it was found- so I can relate!  It sounds like you are newly diagnosed.  Have you recently had surgery?

Thanks to Joey Richards!  I wouldn't have found this place if not for him!  I'm anxious to hear how he's doing.

Martha
Martha

chelsmom

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Re: Update on Joey Richards
« Reply #21 on: October 03, 2007, 02:48:18 pm »
Hi Martha,

Welcome to the group.  I'm glad you found us.  I too remember your sister writing and asking questions about your shunt .  My daughter Chelsea also had a hugh tumor which was partially resected and followed up with FSR and has a shunt.  She was in the hospital for three months with some of the same complications you had.  What I was wondering is that you said your tumor was 4.1 cm and after surgery and FSR it is now 3.7 cm.  Am I understanding this correctly?  Chelsea's was 6 cm and is now 3.2 cm at largest point.  I know that by volume it's now approx. 70% less than the original size.  It doesn't seem like there is much of a difference in your pre-op and post-op size if I am reading your post right.  I was shocked to find out how much Chelsea had left after her surgery.  I know the size of the tumor, even residule, can pose a problem with post radiation swelling and the pressure it puts on the surrounding tissue.  This is especially true with these larger AN's.  Chelsea was back in the hospital for 5 days this last summer with some post radiation swelling and was given some different meds and is now doing fine.  She'll go back this month for another MRI and followup with the Docs.

Did you have to get the shunt due to swelling, hydrocephalis, caused by the radiation? 

I hope you're feeling better now.  All my best.      Michelle

satman

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Re: Update on Joey Richards
« Reply #22 on: October 03, 2007, 03:36:01 pm »
Can somone please tell me with hydrocephalis is.
I had trans lab on 8cm in april,is this something I should
be concerned with?
kicked my little 8cm buddy to the curb-c ya !

MStout

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Re: Update on Joey Richards
« Reply #23 on: October 04, 2007, 02:12:15 pm »
Hi,

My sister remembers you, Michelle. She talked to someone whose daughter or husband had an AN...that's you!  I had a tumor that was 4.1 x 2.7 x 3.2 cm when found.  The surgeon only got it down to 3.7cm - he said there was "major stuff" running through it.  He said that every time he tugged on it my blood pressure went wild; that was my way of complaining he said. I had FSR about eleven months later because my MRI showed new growth.  Apparently there were cysts on my tumor.  Yes, the FSR caused hydrocephalus (water on the brain) so I had a programmable shunt put in.

How old is Chelsea? That was a large tumor she had, I'm so glad they were able to reduce it so much.  She probably had "major stuff" involved too, and that's why they left so much.  It sounds like she has had a rough time, a lot like me.  I'm glad that we both are survivors!  Good luck on the MRI this month!

Satman - I don't know what trans lab means.

Thanks for the welcome!

Martha
Martha

chelsmom

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Re: Update on Joey Richards
« Reply #24 on: October 04, 2007, 03:26:48 pm »
Hi  Satman,

Hydrocephalus happens when the ventricles in the brain don't drain properly.  In Chelsea's case her 4th ventricle was block by the tumor and all the other (3) ventricles were enlarged.  This is serious and sometimes if not treated can be fatal.  There are many sites on the web that go into detail about this.  I'm suprised, due to the size of your tumor, you didn't have hydrocephalus.  How are you doing now?  Your's is largest tumor I've ever heard of.  Did you have any complications? 

I know this is a site about Joey and I'm sorry we've been discussing things other than him.  I don't know how to move this or if it should be, but if so maybe someone could do it.

Take care, Michelle

satman

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Re: Update on Joey Richards
« Reply #25 on: October 04, 2007, 03:59:49 pm »
Hi Clelsmom,thanks for the explanation,I seriously hope I dont have to deal with that one.
As far as complications go, I could not walk,had to use wheelchair,then I finally made it to a walker, eventually came the cane, now i dont use anything ,although I move real slow.Eating is a real chore [I wear most of it].
I still have balance issues [walking] but 1 day I will get to where I need to be. I am deaf in left ear,left eye has no blink reflex,but when I concentrate I can close it most of the way. I have facial paralysis on left side,and have to drink everything from a straw.My  1st surgery was 17 1/2 hrs ,in I.C.U. for 6 days,3 of those were in an induced coma,15 days in hospital, a little over a month in in-patient rehab,2-3 weeks in home re-hab,somewhere around 2 1/2 months in out-patient rehab.
then I had another surgery [7-12 nerve jump] that took 8 hrs,still waiting on the results from that one [facial movement].
these surgeries were within a 4 month period,so after 25 1/2 hrs of being under,my hair started falling out.
that has stopped now but still dealing with all the other stuff.                       John....
kicked my little 8cm buddy to the curb-c ya !

4cm in Pacific Northwest

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Re: Update on Joey Richards
« Reply #26 on: October 04, 2007, 05:16:07 pm »
Satman you are still my super dooper trooper hero. Amazing what you have gone through...

Has anyone got an update on our Texan sports writer friend -Joey... and how his recovery is going. I hope he is doing well ...and becomes a 'postie' soon.


Somehow I think Joey will understand what an amazing athlete you are Satman (Aka "8") - as you are a world class top all star in our AN world. You are a model of hope and perseverance...

Cheers,

"4"
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Brendalu

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Re: Update on Joey Richards
« Reply #27 on: October 04, 2007, 05:33:31 pm »
I have been wondering and wondering about Joey so after reading an article written by Ian White in the Galveston paper, I emailed him an inquiry about Joey, he emailed me back the following note almost imediately.  I will keep you all posted as they let me know.  I put my socks in the washer today, to my husbands relief!

Dear Brenda,

Many thanks for your thoughtful inquiry about Joey. I’m very pleased to say that, as far as we know, he’s doing well. A couple of days ago, there was some talk of him coming out of hospital fairly quickly, but we haven’t yet heard whether that’s the case.

Sports editor Josh and reporter Laura Elder had planned separate trips to see him at the weekend and early this week, but at that time his brother said he wasn’t up to it yet. Then, on Tuesday, Joey called Josh on the phone and gave him some very lurid details of his experience, which Josh dutifully relayed to some of us while we were eating!

I have told Josh that you and the AN Gang would like more info and, between us, we’ll do our best to update you as progress reports come through. We will also let Joey know you’re thinking of him.

With every best wish,
Ian White

PS: I hope this means you can wash your pirate socks now!
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

leapyrtwins

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Re: Update on Joey Richards
« Reply #28 on: October 04, 2007, 08:44:29 pm »
Brendalu -

thanks for the update on Joey.  Hopefully he'll give us all some details when he's feeling up to it.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

satman

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Re: Update on Joey Richards
« Reply #29 on: October 04, 2007, 11:45:32 pm »
4cm,thank you, you are my biggest fan, thanks......John.....
kicked my little 8cm buddy to the curb-c ya !