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Old 03-11-2008, 07:07 AM   #31
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Re: what to expect after cystocele operation

J.T.,

So GLAD to hear your going to Cleveland Clinic! Your in GOOD HANDS! I go to a Mayo clinic here in Florida, its SO important to be in the BEST hands, what a relief!
They have come such a long way today in the medical field treating difficult , Rare, and what seem impossible diseases, your at a place where they are at the top of the field, your going to be ok my friend.
Please let me know if you can when they are scheduling you for surgery.
Take care, stay strong, and of course continued prayers going out to you!

God bless,
Annette

 
Old 03-11-2008, 07:28 AM   #32
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Re: what to expect after cystocele operation

I've got most of the scoop right now...Surgery is next Wed. March 19th, at Cleveland Clinic...what time I won't know until the day before...they changed
oncologists because the one they wanted originally would not be available...I now have the Head Chairman of oncology in this field, at Cleveland Clinic to assist him, which I am pretty glad of...
I meet with him this Friday, but have to run over to the other hospital way over on the other side of town same day, for the urodynamic testing, they did the best they could as far as appointments go, so that's what I will have to do that's all...they want to do blood work also to see if there is an elevation of blood cells which tells them there is a problem right there...
I meet with my Dr. on Tuesday, the day before my surgery, back at Cleveland Clinic, and that will be it.....
THANK YOU so much for your support and on going prayers....I probably will be working 1/2 day on Tuesday, day before surgery, when I meet with my own Dr., as Cleveland Clinic is somewhat in downtown Cleveland, and I work downtown, so I can just scoot over there....hopefully...if appointments stay the same....God Bless and appreciate so much all of your prayers....J.T.

 
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Old 03-11-2008, 08:52 AM   #33
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Re: what to expect after cystocele operation

J.T.,

Well you cant get better than that, Head Chairman of Oncology thats fantastic! This is awesome news!
Thats one thing I LOVE about Mayo clinic, is that I TRUST them with my life. When I was headed in for surgery on my lungs and brain surgery for that matter, people kept asking me if I was scared, I answered them truthfully, "absolutly NOT"! I have such a peace about me, and I believe that in the end, its in Gods hands, and being in GODS hands COMBINED with AWESOME DOCTORS, your doing ALL you can, at having the best chances. No one can do better than that!~
Thank you so much for the update, this is great news with the doctors, I'll be here if you need to chat, Take care, and stay strong my friend!
God bless,
Annette

 
Old 03-13-2008, 07:14 AM   #34
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Re: what to expect after cystocele operation

J.T,

Thanks for responding. I do understand what your going through and its scarey but remember one thing, your NEVER truely alone, God is with you, people are praying for you, and dont be afraid to pray for YOURSELF you are as deserving as anyone. He walks with us ALL my friend.
I will look forward for your return to work, to get an update. Stay strong, be safe, speedy recovery, and of course, GOd bless!

Annette

Last edited by Momof2sons; 03-14-2008 at 07:21 AM.

 
Old 03-17-2008, 07:27 AM   #35
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Re: what to expect after cystocele operation

J.T.,

Best of luck tomorrow, continued prayers for your speedy recovery! Will be watching for your return. God bless my friend!

Take care, and stay strong,
Annette

 
Old 03-17-2008, 07:52 AM   #36
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Re: what to expect after cystocele operation

Annette, thank you for your continued prayers...was a long day at the clinic on Friday, the Primary Physician, the oncologist Gyn, had an emergency, which was fine, I would like to think that other people would be as understanding if it were me., so I was there over 5 hours..He had to examine me also, and said he really couldn't feel anything, which doesn't mean much other than he would find out what is going on once I am opened up, he said he couldn't honestly say until then, and that would be the only way.......
that blood work test they took, what's it called, the CS125, came up normal also, an 18, but that doesn't rule out things...in his eyes is only 25% accurate, and they, meaning research, are trying to come up with something that can detect early ovarian cancer in women by the blood work, other than that other test, since that test is not all that reliable in early cancer..this is something they are just "working" on now, they have not come up with anything definite yet.....they descend on you there like a hawk, wanting you to participate in things...I agreed to a number of things, but after awhile I had to back out...that was enough for me....they actually made me late for my other appointment at the other hospital...Went to Urodynamics at the other hospital then, that was lots of fun, ugh...glad that is over....again, Annette, thank you so very much for your support and prayers, I will take all the prayers I can get.....
My surgery is for Wednesday of this week, the 19th...will not be in tomorrow as I have to go through some more things at the clinic...admitting, etc....thank you again...God Bless....Janet

 
Old 03-17-2008, 10:14 AM   #37
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Re: what to expect after cystocele operation

Janet,

YEs the Urodynamic testing is such a joy! NOT! But the way I think of it is at least there are tests to try to determine the cause. I've had approx 5-6 over the last 10 years, in 4 different states, and they all have their own little unique way of doing them, but the end means are basicly the same.
Yes, I've had the CA125 done at MY request, and my primary Doc was reluctant to do it because she said as you mentioned, it has little meaning because it wasnt very accurate. Wonder if the one you had CS125 is new?
Yes they DO descend on you at Major medical facilities, Mayo did that to me also. But I was a willing party. I can understand with you, you can only DO SO MANY! Totaly understand that! I had become part of a study for lung cancer, before they did the "staging" procedure, lots of paper work to sign, with extra biopsies taken. With mine all being begnine, they STILL were'nt sure. Biopsies are so small that even a negative results isnt 100%. Cells can be missed, so in my opinion, Im glad they went in and took it out, that really IS the only 100% way they can tell. I'm so praying for a negative results for YOU as well!

I will certiantly continue to pray for that! Take care, and GOd bless my friend! Will look forward to your return.

Annette

 
Old 03-17-2008, 10:25 AM   #38
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Re: what to expect after cystocele operation

Annette, no, the blood test I had done was the CA125, yikes, I called it the CS125, well, I was close....
No, that is what they are working on, developing a test that can define EARLY cancer, but they have a way to go on that yet....
If it is benign, they throw everything out....
You have been through so much...I can hardly believe it all...
Take care Annette...and my deepest thank you for the support and prayers....
J.T.

 
Old 03-17-2008, 11:08 AM   #39
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Re: what to expect after cystocele operation

Janet,

LOL...Yes, you were close, One KEY OVER<<<<<..haha..too funny! The delete key is MY friend..haha
Believe it or not, going through things like this makes us stronger, and it will make you stronger as well. And someday, YOU will be helping someone like yourself who is going through something similar.
I was on your end myself at one point not too long ago when going through all the testing for the muscle disease. As I had mentioned it was online, that I had my best support system. To interact with someone who's going through something similar, lets you see the light somehow.
You will look back at all this someday, and see the strength it gave you. What is it they say..."This TOO shall pass"...

Be well, stay strong, and GOd bless,
Annette

 
Old 05-19-2008, 06:16 AM   #40
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Re: what to expect after cystocele operation

Hi Annette, well, I'm finally back, and it's good to be back....
Well, during surgery they did find cancer...it was in my fallopian tube, right hand side only, all self contained..plus one lymph node, very small also., had cancer..he did a compete resection there ...so, all cancer is gone except for microscopic cells which showed up in the peritoneal washings, which also showed up malignant, which is what the chemotherapy will take care of...I am in the third stage because it had spread the way it did to the lymph node, had it not, it would of been in a different stage...Dr. was surprised, did not expect to find any cancer...he told me the chemo was for precautionary reasons, and that I would be going through 6 rounds of it, in about a 5 month period...well, when I went in for my 4 week check up with him, he was on the computer and hands me a sheet that tells me women in my stage have about a 3 year survival rate...was stunned...he is very analytical, looks at averages, good surgeon, but not the best bed side manner....well, I flew to Houston Texas for a second opinion, whcih I am entitled to, and someway (God's help, that's how) I got in with the top Oncologist in this file of Ovarian and Fallopian tube cancer (Fallopian tube cancer is treated the same as ovarian cancer)...this hospital is M.D. Anderson, by the way, anyway, he examined me, also ran some tests, and goes before a board of doctors who go over your test results and findings (they had the results sent to them from the clinic from my surgery etc.)...and he said if even one Dr. seems to differ on the treatment plan, he lets you know..well, it seems they all agree with the Cleveland Clinic, the standard procedure of 6 rounds...He feels very optimistic for me, as he said, I am not the typical average patient that they take these percentages from...he said I was different, they caought the cancer, I had a resection, and it is all in my favor...so, with prayers and God's blessings, I will make it through this I am sure...I have had one chemo treatment already, go every 21 days, as long as the blood cell count etc. is at the level it should be...it's rough, but life isn't always easy, you just take it as it comes...they are glad they caught it when they did, had it not been for my bladder, who knows how far things could have gotten?? please keep praying for me...thank you so much...love, J.

 
Old 05-19-2008, 08:57 AM   #41
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Re: what to expect after cystocele operation

Janet,

It is SO GOOD to HEAR FROM YOU!!! I have been thinking about you, and PRAYING everyday! This is what I truely believe...Your bladder issues were what is known as DEVINE INTERVENTION! As with my brain surgery was which prompted the pre-op chest x-ray finding the lung nodules!

Girlfriend this has Gods hands written all over it! This was ment to be found and delt with! M.D. Anderson is one of the BEST facilities for dealing with this, and as it seems with a much better bed side manner. As to the Doctor at the Cleveland Clinic sounds to be very ANAL and looks at numbers as though it were code. Those statistics are just that, NUMBERS, it dose not take the indiviual patients generalized condition and cicumstances into concideration! Kind of reminds me my surgeon telling me that mine was a "classic case" of lung cancer, and me telling him, I've defied the odds before. He called it deniel, and I called it FAITH! You keep that FAITH my friend, it will take you far! Good for YOU going for that second opinion! Oh, and do me one small favor, if you see that surgeon again, give him a little "smack" for me, and I dont mean a kiss either...SHAME on him!

Well I went back to Mayo in Feb. for a re-scan of my lungs, and I have some new "nodular thickening" in my right lung, at the area they recected. The Pulmonologist said "had" that been cancer, seeing this scan would make her very worried that it was back. She wrote in the report she "thinks" these are benign given the fact the main mass was benign. I HATE that word "think", but the plan is to re-scan in July and take it from there.

Then I went back to see the Cardiologist over there in April, I had a "loop recorder implant" put in which will monitor my heart 24/7. This device is implanted in the chest. The plan there is is to wait for another "event" to happen with my heart then they will know wether its a pacemaker OR a defibulator I need. He needs to make sure what had happened to me in the hospital with my heart taking those long "pauses" IS what happens when my body isnt under stress ie..having surgery. So thats the plan with that.

Anyway my friend ,thank you so much for letting me know how you are! With God, Prayer, Faith, and a positive attitude you will get through ALL of this!

Take care, stay strong,
And GOd bless.
Annette

 
Old 05-19-2008, 09:45 AM   #42
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Re: what to expect after cystocele operation

Annette, so good to hear from you also! I need positive feedback, and you made my day, thank you...yes, I feel I will make it just fine, God has certainly been there for me, the prayers have been unbelievable for me, they have poured in from all over!! and I thank you so much for yours, that has truly made a difference....
Oh Annette, your lungs will be fine, just as before, God is there for you just as he was beside you before...I will continue praying for you also for that device implanted in your chest to monitor your heart that all works out, which I am sure it will, and for July when they plan on rescanning your lungs....you will be fine, you are strong, and have the faith...I am a lot stronger now I feel than I have ever been..sometimes it takes something crucial in your life to make you see and change things that you should have before, you know?? I will be praying for you...we have a worldwide prayer list we have here at work, where your name is put in and prayers are said for you all over the world, yours will be included...last name not needed, God knows who we are...take care...love, J.

 
Old 06-25-2008, 08:03 AM   #43
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Re: what to expect after cystocele operation

Annette, it amazes me some times that I still have a job!! I will start over again, as I do not know where I sent it to, yikes....
I am so glad you had your vacation as planned!! I would of made the same call as far as them wanting you to stay in ER, I wouldn't have either, and for the very same reasons!! sorry to hear about your cardiac implant getting infected...your alright now, right?? was it for the same reason the other two times, or was it for something else?? I feel bad that you had problems, but so glad you did go ahead with your plans!! honestly, how are you feeling now??
So glad you had a good time with your sons though and was able to be with them, well, I know you were with the one, but I mean the other also that you visited...did you see some wonderful sights??

I finished my third treatment, and am onto my fourth come, July 9th...After my second treatment, I had a bad allergic reaction...couldn't breathe, ..they gave me a "triple " dose of Benadryl, triple cocktail they called it...anyway, it worked... this next time, it was only slight, and I doubt I will have it anymore...scary though....on the 7th I will have a cat scan (which is midway ) and then again three weeks or so after my sixth I believe, if I have it right...I take a shot called Neulasta now, which is given to me the day after each chemo treatment...it builds up the white cell count, as it went down some and they were afraid it would of put my chemo off, but it managed to come back up the day before treatment, but he ordered these shots now, (my Dr.) so it helps with the bone marrow...very painful after about 3-4 days, (side effects) and it's time released, so, it kind of keeps going, but maybe not as bad as it was...bones throb, terribly, kind of hard to walk at times...but that's all a part of it, so you take what's handed to you and go on from there...... Let me know how you are doing today, okay?? all is okay as far as infections, etc...??? waiting to hear from you....love, J.

 
Old 06-25-2008, 06:03 PM   #44
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Re: what to expect after cystocele operation

Janet,

Yes the two other visits to the ER were for the same thing. They wanted to keep an eye on it to make sure it was healing. Yes it appears to be gone at the moment, THank GOd. I'm hanging in there. I'm still trying to learn this whole thing with "pacing yourself"! I usually push myself too hard one day, and pay for it the next few days with weakness, muscle pain, and of course the fatigue that never leaves. I take a couple naps every day trying to catch up, but that never seems to happen. I just keep pushing forward, and refuse to let this totaly ruin my life, just need to improve my "pacing skills". That's a hard thing to do when I was always so active and my job was so physical, but I will get it, eventually...

I did re-scan in Febuary for my lungs and have two new nodules in my right lung(which is the one they removed part of). So I have to re-scan again in August. They had scheduled me for re-scan for July, and a follow up with my cardiologist at the same time, but for some reason I recieved a "revised" schedule while I was on vacation and it was changed to August. I think Im going to call them though and see if they can change it back to July. I've been having those same "twinges" of pain in my chest, and numbness in my arm as I had before when the MAI infection was growing. The report the pulmonologist wrote after the re-scan in Feb. said I "think" the new nodular growth are benign given the fact the main lesion that was removed was benign. I just hate the word "THINK"...and given the fact this dang muscle disease can make me more suseptable to malignancy, just seems to keep me on edge all the time. But all I can do is keep all my appts. and hope for the best. I also made an appt. today to have another inturnal ultrasound to check my ovaries again. I was supose to have one in March , but with all the lung business going on I put it off. I have been getting cysts on my right ovary for a few years now, and my left ovary had went into hiding. Well my last ultrasound showed the 4 cysts on my right ovary had went down, but my left ovary came out of hiding and had two cysts on that. So given all my other issues the GYN wants to make sure these cysts are "functional cysts" as were the ones on my right ovary. Anyway that is scheduled for mid July.

I can imagin how scarey that was for you to have those reactions! I do know what its like to not be able to breath while having reactions and scarey is putting it mildly. Thank GOd the benadryl worked! I will certiantly pray that it dosent happen again!

I'm so sorry to hear about the bone pain your going through right now, and what you have to go through physicaly to rid your body of this terrible beast!
With you keeping the positive attitude, and your wonderful spirit, WILL get you through this my friend!

Continued prayers are coming your way and will also pray your white cells stay up, you have amazing positive results with CT scan on July 7th, and soon this will all be a battle YOU CONQUERED!

Many HUGS, Continued prayers,
God bless, and stay strong
my friend!
Love, Annette

 
Old 06-26-2008, 11:37 AM   #45
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Re: what to expect after cystocele operation

Annette, sorry its take me this long to reply....
I am glad to hear that your cardiac implant infection has not returned and you seem to be doing alright with that...feel bad that you even had to go to the ER during your vacation, but good to know that there was some place you could turn to also...

You have a lot going on in your life right now, but you know, I give you credit for pushing yourself the way you do...overdoing it, no, but I think it is so much better than what others would do, which would be to just take it easy and do nothing much at all...it is so much better to remain active, even when you don't want to...it also gives you a healthier state of mind....just don't over do...

Don't let yourself think things when it comes to the nodules in your lungs or you will be on the edge all the time...you kept your faith before, just keep going with it...you will be on my prayer list as before, and I will continue to keep you there...the same goes for the condition with your ovaries..I'm sure you are going to be just fine there as you were with the other side before then...it's easy to let one's defense down when so many things seem to hit at once....your strong, you just keep it that way...

You keep me posted as to how the test results come whenever you may get them and I will with you....you have a wonderful weekend, let yourself think all good thoughts...take a deep breath and go on from there....

Please know you are in my thoughts and prayers....stay strong...love, J

 
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