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 Your suggestions? 
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Your suggestions?
Hi All,

It's always something I guess...I need to have my uterus out abdominally on oct 11....I have a fast growing mass (most likely a fibroid) causing lots of rather urgent problems the last two months and I had a previous abd surgery (with resulting adhesions) so they cannot do it laproscopically.......Do you think I could do this with an epideral nerve block in order to avoid general anesthesia and risks to cognition with LBD? It will be done just like a c-section....people are awake for those???.....

I am going to try to keep my ovaries so that I can preserve the cognitiion that might be lost in a surgerical menopause in my mid-40s...

I appreciate your thoughts on this - makes the tooth extraction/implant issue seem small now (had to postpone that due to this).....

The stress of all this is really affecting my mood and cognition - I can say that....I think Craig talks about feeling overwhelmed a lot - I do feel that way too...I suspect it doesn't take much to overwhelm someone with LBD.....I was kinda feeling more like my thinking was straightening out after being at the target dose of Namenda but the recent stress has taken much of that away - I am feeling very lost......I think stress/changes must be very hard for LBDers....perhaps for everyone......

Thanks all for any suggestions you might have or experiences you can share about your LOs and major surgeries.....I fear the trauma and what I know will be a longer than average recovery due to my fatigue and poor physical strength will leave my cognition worse off....on the other hand, getting this foreign thing out of me may lead to improved cognition since I am having many physical problems with it......trying to look on the bright side....

Thanks again all of you for being here......

Best,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Sep 21, 2011 6:47 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Your suggestions?
Hi Tonya - sorry for your new medical problem. Can they remove the fibroid or do something to shrink it without having to do something as radical as a hysterectomy? Have you gotten a second or third opinion? That's pretty radical surgery and if there is something less invasive, I'd want to pursue that. If you've already done that and this is the only way of dealing with the fibroid, I'm hoping someone can answer your questions about anesthesia. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Sep 21, 2011 8:29 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Your suggestions?
No answers here. but I want to send you a hug. Best wishes to you as you struggle with this.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Sep 21, 2011 9:32 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Your suggestions?
prayers...

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Sep 22, 2011 12:18 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Your suggestions?
Tonya,
I'm so sorry to hear about this urgent medical problem. Yes, it does make the tooth extraction seem minor. I would go with whatever the neurologist says. And the anesthesiologist...are they even willing to try an epidural block as the first plan? And what's their plan B?
Robin


Thu Sep 22, 2011 12:38 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Your suggestions?
Tonya, I have been wondering where you have been. I am so sorry that you have to go through this - you have einough on your plate. My heart goes out to you. I was at my own doctor yesterday, and I have exactly the same problem, though the doctor is putting off surgery - so mine must be much smaller than yours. He says my womb is the size of a woman 14 weeks pregnant. It does give me problems, but doesn't interfere with my life at the moment. He didn't discuss any aspects of the surgery, just said it would more than likely be something that would have to happen in the future. He did say there were no other options, as they cannot be shrunk. I think, and this is only my opinion, it should be possible for you to have the surgery with an epidural - as you said, women have children this way all the time. Try not to worry, you are so very strong, and , even though it may set you back a little, I can't see you letting it get the better of you. You are in my thoughts and prayers,
God Bless,
Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Sep 22, 2011 3:18 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Your suggestions?
Thanks all for your kind support....

Lynn, they cannot do anything effective to shrink it - it's in a place that doesn't respond to the embolism treatment and can't be accessed through the cervix. Also I was already on a low dose BCP which is supposed to shrink them but it obviously isn't working.....I have had problems that I have been putting up with for years now....so I guess it's just time to do something permanent about it. Also my Maternal Grandmother had uterine cancer so won't have to worry about that if I go through this (also lots of other related cancers in the family).

Jeanne and Craig - thank you for your kind wishes!!

Robin - I am scheduled to have a special consult with the anesthesiologist ahead of time - I think plan A will be to try the epideral block - like most c-sections - the incision will be just like a c-section - and plan B will have to be if there are complications they will have to resort to general anesthesia. I will know more after we get to talk with the anesthesiologist....I'm glad my doc is setting that up for me. I haven't even gotten my neuro in the loop yet this is all happening so fast.....but she will be next.....

Ger - So sorry to hear you have the same thing!!! We must be close in age.....In your picture your wedding dress style looks very similar to my own so I thought maybe we might be close in age (I'm 46 and getting close to 47).....Mine is actually about a 12 week pregnancy size....so smaller than yours really, but it's location is causing me lots of problems that very much interfere with my daily life - I can only eat a liquid diet the last two months......so I guess this is the only solution. I'm sorry you have to deal with this with all you are going through right now too......I will be thinking of you....

I will be thinking of all of you and am so grateful for your kindness and support.......I am very scared about what this will do to my LBD......but maybe in the end it will help my cognition not to have all these physical problems, pain, and stresses......I hope.....Thanks everyone!

Best,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Thu Sep 22, 2011 11:39 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Your suggestions?
Yes, Tonya, I'm 45. Thank God mine only gives me trouble sometimes, not all the time, but the doctor said it will get worse. Look after yourself, you are always in my thoughts and prayers,
Ger x

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Sep 22, 2011 11:48 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Your suggestions?
Thanks Ger....
Sorry you have this - take care of yourself too!!! My thoughts and prayers to you!
Best,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Thu Sep 22, 2011 1:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Your suggestions?
Tonya - sorry you have to go through the surgery. I developed them in my early 40's but by 47 they started shrinking a lot. I was hoping maybe you could wait it out, and I guess mine weren't giving me a lot of problems. Wishing all the best through this. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Sep 22, 2011 8:13 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Your suggestions?
Tonya,
Did you say elsewhere that Versed does nothing for you?
Robin


Thu Sep 22, 2011 9:41 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Your suggestions?
Thanks Lynn....
unfortunately my bowel and bladder are so compromised the doc doesn't think I can wait.....

Robin - that is correct versed does virtually nothing for me - but the neuro said versed with fentanyl would be okay for the tooth so maybe for this? Maybe it does something to relax me but the amnesiac properties are completely absent......

Thanks again,


Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Fri Sep 23, 2011 12:39 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Your suggestions?
Sorry - needed to delete.....posted too late at night for proper perspective......
Thanks for your kindness Cindi.......and everyone....

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Last edited by Tonya on Fri Sep 30, 2011 1:03 am, edited 1 time in total.



Thu Sep 29, 2011 11:59 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Your suggestions?
sorry, i dont have any suggestions here tonya.. but wanted to wish you the best..
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri Sep 30, 2011 12:35 am
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