Last resorts, surgery or Lupron

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Monty's Mom
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Date Joined Aug 2010
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   Posted 7/20/2011 12:30 PM (GMT -6)   
My surgeon was not happy to see me. He is the last surgeon in our area (at a teaching hospital) who is willing and feels able to handle my care.

He gave me 2 options, Lupron, just 1 injection to last 3 months, to get me through my wedding and surgery after if the symptoms come back as strongly as he thinks they will, or have surgery that will clear out all the adhesions on right and left side with the 3rd grown ovary. The surgery would require anywhere from 8 to 12 weeks to recover from because my bowel will most likely be perforated, torn, or otherwise compromised when they attempt to remove the adhesions. This would require an excellent bowel surgeon to assist, but much longer recovery time and a possibility of 40% success for pain reduction. They make no guarantees with either treatment.

What do I do? Do I try Lupron, a very scary drug, or have another surgery and chance being in horrible shape for the wedding I have been planning for 2 years? I am researching the drug, but am terrified by what I read. My doctor thinks that the Lupron is the best bet to get me through the wedding in the safest way.

Does anyone have any advice? Anyone? The surgery is daunting, yet the Lupron is just as daunting and may not work.

I am ready for a body transplant!
Mindy

Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 7/20/2011 12:45 PM (GMT -6)   
Mindy,
 
I didn't get a chance to reply on your other thread.... but I was thinking about you and your appointment today.
 
Oh, I need a body transplant too... I'm with you on that one, sister!  I'm not trying to make light of your situation.... but I just find when things are so complicated, you just gotta laugh sometimes!  Otherwise, I tend to crawl in bed and not get out.... :)
 
Anyway.... I would just pray about the situation... discuss w/ your fiance (what does he say about it?)... and just search your heart for the *right* decision for you.  On "paper" - I'd say that I would probably go the route of the Lupron... get you through your wedding... and so forth.  I'm saying that...because, if you are anything like me, the "worst case scenarios" could happen - and I'd have to make my decision, knowing those would be real possibilities. 
 
Again, you will be well supported here - whatever decision you make, Mindy.  I'm sorry you are even in a position of having to make these lousy decisions.  And I can only tell you the path that I probably would take.... you have to do what is best for you and your family.
 
I don't know if you remember - but when I had the girls - that was my 7th c-section.  So, I've had 7 major abdominal surgeries.... I won't get in to all the boring details - but the surgeon who did my surgery said getting into my uterus (because of all the adhesions and such) was literally like trying to walk through wet concrete.  I'm a mess inside.  Somehow, though, I made it through.... recovered *better* physically than anyone thought I would.  So, they have to give you the "worst case" situation - but, as we know, anything is possible.
 
Hang in there.... praying for you as you make this big decision... and know we will support you either way.  --Tina

Angeleyes13
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Date Joined May 2011
Total Posts : 636
   Posted 7/20/2011 1:20 PM (GMT -6)   
Monty's Mom said...

What do I do? Do I try Lupron, a very scary drug, or have another surgery and chance being in horrible shape for the wedding I have been planning for 2 years? I am researching the drug, but am terrified by what I read. My doctor thinks that the Lupron is the best bet to get me through the wedding in the safest way.

Does anyone have any advice? Anyone? The surgery is daunting, yet the Lupron is just as daunting and may not work.

I am ready for a body transplant!
Mindy


Sorry Mindy that you are faced with making this difficult descision. I had Lupron injections for a couple weeks before my uterine ablation 10 years ago and dont remember what the side effects were. Did your dr discuss what can be done about the side effects if those should happen? Can the Lupron be done right now and opt for surgery before the wedding if it doesnt work? I am not sure when your wedding is, and how long it takes Lupron to show any results, sorry.

I opt for the body transplant, sign me up if you find a doc with experience! Sorry for joking, at this point I am facing 2 surgeries before I go back to work in September. Then hopefully my spinal cord stimlator during Christmas break. I just want to crawl under a rock at this point.

Put your full trust in whatever you, your fiance and doctor decide is the right road to go. We will all support you and pray for success!

Big hugs,
Shell
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 7/20/2011 4:11 PM (GMT -6)   
Mindy, what a scary set of choices, and so close to your wedding. I am getting married in September, and I know I have had my fair share of tears over whether things will be okay pain wise, but I can't imagine having to consider surgery so close to the wedding. *gentle hugs*

I also have endometroisis/pelvic pain, and I have considered Lupron but decided against it mostly because when I asked "and then what?" no one had a good answer for me. The side effects - especially the menopause like symptoms - do sound awful, but when I was being offered it, I was in so much pain that I would have been okay with them. My doctor said the bone loss is not a big concern when it is used short term.

I'm not sure what I would do if I were in your position. It sounds like surgery is your long term solution, but that it might be a very difficult surgery with a long recovery. I know your wedding is a very important day for you, and it should be! Honestly, I would probably do whatever I thought maximized my chances of a happy wedding day. Good luck with the decision, we are here to support you.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 7/20/2011 6:14 PM (GMT -6)   
Hi Mindy I'm sorry you're having to make this kind of decision so close to your wedding. Like someone said, we will be here to support you either way you decide. I would advise doing what would let your wedding to be the happiest. I don't have the kind of pain that you do, so I don't know what I would do. I wish you good luck. You're in my prayers.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 7/20/2011 7:42 PM (GMT -6)   
Oh Mindy, I'm sorry you're facing such a difficult decision. I don't know enough about either to make any comment, but just wanted to offer my support.

*gentle hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 7/21/2011 8:53 AM (GMT -6)   
Thank you all so much for your support. After talking to my PM doctor, my PCP, and my surgeon again, we are going to try the Lupron first. If it does not work or becomes really bad, we will talk surgery then.

I really don't want another surgery at all. There are all the fears. What if I am in worse shape after? What if something serious happens?

This is all just too much, too fast. I just want to get married and live my life without all the time spent focusing on myself.

Its funny because I keep coming back to all I can do is pray. What do you do when you have been praying the whole time, and the options facing you still stink?

Thank you all for your support. I would be a total wreck without the friends and family I have here.

Praying that you are all having great days,
Mindy

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16295
   Posted 7/21/2011 9:15 AM (GMT -6)   
Hi Mindy, my sister-in-law had severe endometriosis and her dr told her it was time for a hysterectomy. Her dr said this was the only thing that was going to give her any kind of relief. She had no intention of having anymore children so she agreed. She had suffered terribly for a very long time and was just ready for something to be done. I know she suffered because I saw her doubled over in pain a lot.

Out of the blue she gets a call from the drs office that her insurance will not approve the hysterectomy until she tried Lupron for three months. She did the Lupron and it was a bust, no improvement. She was told the risks of the Lupron and all of that. She said she had some hot flashes from it but other than that no problems. Hit flashes is something the dr said most women will experience with Lupron.

She had the hysterectomy and the dr came out and talked to my brother and I. The dr actually apologized to my sister-in-law because she had down played Janet's pain. She said when she opened her up her insides were a mess, the endo was all over everything inside. She did much more cutting and scraping than what she had anticipated. It was all over her bowels and it was removed without nicking anything. We were getting very worried because the surgery took much longer than what we had been told. She did very well and has been fortunate that the endo has not returned.

I hope that you are lucky and do not have any problems with the Lupron too. I think you have made a wise decision to try it before having more surgery. Its worth trying. Its getting closer to your wedding so try to think about it and the fun you are going to have. Take care.
Moderator Chronic Pain Forum

Dagger
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Date Joined Apr 2008
Total Posts : 1522
   Posted 7/21/2011 10:44 PM (GMT -6)   
It sounds like you have great doctors, they are being very honest and realistic and aren't promising you a miracle. I am not a fan of Lupron but I can see why you would consider it. What a choice to have to make!

I've read many of your posts so I know you have researched your options. I have nothing to add except that I've had a bowel resection and it was not really that bad at all. The fatigue afterward surprised me, it lasted for months but otherwise, the surgery and recovery were ok.

It really gets me crazy that they have no real way to stop the adhesions. Every time they open me up, they tell my I am filled with adhesions, all my organs are stuck together. I've been lucky that all 4 surgeries have been laps but they tell me that won't be the case much longer. If they could stop my body from forming adhesions, I'd probably be almost pain free.

I hope the Lupron works for you. You might want to consider add-back therapy if the side effects bother you too much.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/21/2011 11:34 PM (GMT -6)   
Mindy....
 
I'm glad you've come to a decision.  I find myself in that same position at times - choosing the "lesser of two evils".... both decisions stink!  But, I guess that's just how life is, at times confused
 
I'm hoping, along w/ everyone else, that the Lupron helps you... or at least keeps you "stable" until you get through your wedding.  
 
Re: your fears of surgery - as I said in my last post - I do understand those fears completely.  But, as I think Susie/Stray said - I hope in these last several weeks - you can just focus on your upcoming wedding and how wonderful it will be.  Even w/ all the pain issues.... family stresses.... and so forth - I hope it will be a day where you can forget all that stuff and just make a day of great memories. 
 
I know you've mentioned it before - how long until your wedding day??  You will make a beautiful bride! 
Hope you survived the heat...!  --Tina
 
 
 

Monty's Mom
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Date Joined Aug 2010
Total Posts : 664
   Posted 7/22/2011 8:15 AM (GMT -6)   
Tina, Dagger, Straydog, Thank you. I really don't know where I would be without you right now.

Tina, The heat is really staring to get to me. My fentanyl patch was due this morning when my fiance leaves for work, he helps put them on parts of my arm that aren't losing skin from the previous patch reaction. I had horrible shakes and pain in the middle of the night from the heat. My temp runs high anyway, but with it hitting 100 yesterday and a 92% humidity, it sapped all the meds out of me quicker.

Today we have the AC on in each room just to take the humidity out of the house. I hate running them, we have 3 for our mobile home, each end and the living room, but even on 80 it will make the electric bill go way up. The boys slept in our room part of the night until I woke them, then came to the sofa bed we have in the living room. What would most of us do without AC?

Wedding day is coming up fast, October 7, 2011. We are getting married on a Friday night during the sun set in a tent in the gardens behind a local hotel. They do everything for us, set up, take down, food, rooms to get ready in, a room for the night, everything. Its 2 years in the making, so I am hoping I am in a place to be able to eat the food we picked so carefully and the cake my fiance adores. I will post pics on my FB page when I have them and post that we finally tied the knot! I would have thrown out everything, dress, hotel, flowers, everything, if it meant we were married sooner. Oh well, its coming quickly some days, and others not fast enough.

Thank you all again. I am blessed to have found such a supportive group. Kudos to all the moderators, the inventor, and the many people here who make it great.
Mindy

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16295
   Posted 7/22/2011 10:32 AM (GMT -6)   
Mindy it does sound like with the heat and your body temp being higher the medication in your patch is being used up much quicker. This is the same thing that happened to me when on them and by day three I was in withdrawals. Try to get yourself in front of a fan to help keep you cooler, drink plenty of cool drinks.

Its just awful here in Tx, we are breaking records left and right, I forget how many straight days of 100 plus we have had. We are also in a bad drought too. My house is a 2 story so you can imagine the electric bills in the summer. I am anticipating $600 this next one that will be in the mail any day now.

Take care.
Moderator Chronic Pain Forum

momtofourangels
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Date Joined Apr 2010
Total Posts : 2261
   Posted 7/22/2011 7:39 PM (GMT -6)   
Hi Mindy. It won't be that long now. October 7 is only what about 5 weeks away. Time flies these day, so it will be here before you know it. It sounds so beautiful, and what a beautiful bride you will be.

The pain patches are tough to keep on these days with all the heat. It scares me that all the fentanyl will be gone before day 3. I hope you're ok in all this heat.

You take care. I hope you're having a low pain evening.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/22/2011 10:26 PM (GMT -6)   
Mindy - My anniversary is 10/8.... October is a good month to get married in... and we, too, got married at sunset... Anyway, it sounds like things will be wonderful!  I can tell how much hard work you've put into making sure everything is just right. 
 
I'm w/ Susie.... I think your body is using up the fentanyl due to the extreme heat.  That's why I finally had to go off of the patch (that, and it gave my fair skin horrible rashes).... but I run a low-grade temp, due to my health issues - and, even w/ changing the patch every 48 hours - the patch would be DRY by the 40 hour mark or so... (this is when the gel wasn't in the adhesive)... Anyway, fentanyl works the best for my pain (I now take it in another form).... but it's a hard medication to "withdraw" from.  Just keep an eye on things....
 
Susie - That's about what our electric bills run during the summer.... it's horrible, huh?  And that's w/ the "medical necessity discount".  Ahhhh.  Life is so darn expensive. 
 
Take care all... --Tina
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