Surgeryin the Horizon

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LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/5/2010 6:51 AM (GMT -7)   
I have tried to stay clear of surgery now for 1 yr 2 months!  I hate surgery for me its just maintance on the kidneys and pain control.  Never FIXES the problem.  Well here I go again but this time it isn't on the kidneys.
 
With having PKD and inexperienced doctors over the years just wanting to go in and poke around have caused nerve damage.  The PKD is to the point of cysts breaking and tearing up the insides of my kidneys.  So it leaves me with pain all the time.  I feel like I am passing stones everyday all day long.  The last few months have been INTENSE!  Thats why I have been AWOL on the forums.  They will not increase my pain meds until I make a choice on this surgery.
 
Spinal Cord Stimulator.  (SCS)  Implanting a device into my back that sends electrical shocks to the spinal cord to tell it to stop feeling pain.  50/50 chance it will work.  If it works there is a chance I could be pain free.  Realistic goals are to be 50% pain free.
 
The goals I'm hopeing for is, decrease my pain med intake by 1/4, lower my Blood Pressure to be able to decrease from 3 meds to 1 and to be able to go out with my family without feeling pain as we walk through the mall or on vacation sight seeing.
 
I'm always a positive person but man this BITES!
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 4/5/2010 11:48 AM (GMT -7)   

Laurie,

So sorry you are feeling so much pain.  It takes so much out of us to be in chronic pain all the time both physically and mentally.  I know that the thoughts of having another surgery is a PITA but if there is even a remote possibility that you would be painfree then you should really consider this surgery. 

I have had constant pain from stent insertion since basically all but 3 weeks from June 29 of last year and if someone told me I had even an option, I would jump at it in a second because I too have NO LIFE.  There isn't a thing I can do that doesn't cause pain and the more active I am the worse the pain is and I'm talking about just taking a shower, so going out and doing things with family and friends doesn't even happen and my body is in the worse shape it has ever been.

So, please, if you have an option, try it.  You just may get some relief and may finally be able to live your life.  I will keep you in my prayers and hope that this works for you! 

Judy


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/5/2010 7:10 PM (GMT -7)   
Today I talked with work and they told me to go ahead and schedule it. They will let me just sit for 8 hours a day and they will even assign someone to do all my running around. Now if I will just sit and not move..lol

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 4/6/2010 3:50 AM (GMT -7)   
Laurie,
I hope you can get it scheduled soon. Please take care of yourself.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/6/2010 5:55 AM (GMT -7)   
First step was insurance approval I have that done now I have to go to be cleared Mentally fit..lol Insurances want to make sure you will not freak out if you have wires coming out of your body. Some people will pull it out. With them paying about 100.000 for the implant and program they want to make sure.

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/6/2010 12:17 PM (GMT -7)   
Oh wow Laurie. I am so sorry you are in such pain. But I am glad you are going to do the surgery and Lord willing you will be part of the 50 percent that relieves your pain. How long is the recovery going to be?

Also, how is your husband doing? You both are in my prayes !!!

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/7/2010 5:35 AM (GMT -7)   
Amy yes I hope I'm within the 50% it would be a miracle if I can be one of the few that come out pain free 100%.
 
The trial is for 3 to 7 days just to see if it works.  For that time I can't lift more than 5 pounds, twist or bend.  If the implant works I will have the permanent one implanted and thats 6 weeks of recovery.
 
My husband is doing fine.  Just to look at the man you would never know he's falling apart.  Man I love this person 19 yrs of marriage and he's always taken care of me.
 
So how are you doing amy?
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/7/2010 6:05 AM (GMT -7)   
Laurie I keep praying you will be one of the few people that takes away 100 percent of the pain. What a blessing that would be! I will also keep your husband in my prayers. YOu have been going through so much and need a break! Hopefully you will get that break soon.

To be honest since Friday I have been horrible. I have the shingles from being so immunosuppresed and since I am a procrastinater, I didnt get to the doctor when I should have so know its gonna take longer for me to heal. I have blisters going from my back to my side to my middle of my stomach all on the left side. The pain meds they gave me lortab is doing nothing for the pain and muscle spasms. then on top of that, my cat got really sick sunday night and has been at the vet since Monday morning. He has had surgery and they found an abnormal stomach growth and extremly swollen lymph nodes. So its either a BAD virus or Cancer...since he is 11 months, its probably a virus but they did a biopsy to be sure. I sure do miss my furry son. If he has stopped vomiting I can take him home today, if not he has to stay hooked up to iV fluids and meds.

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/8/2010 6:34 AM (GMT -7)   
Amy my heart goes out to you.  Shingles is a nightmare!  Man the pain that goes with that!  I would call to get some Soma to relax the muscles.  Pain meds don't always cover all the discomfort I'm one to know that.  A muscle relaxent should help some.?.?
 
I know what it feels like to have a sick animal our boston terrier has been sick off and on the last month. When she gets bad we go to take her to the vet then she gets better.  She's went through this twice.  The third time she is going to the vet regardless if she seems better.  I think its a blockage..lol  Yes a kidney stone..lol  Oh all ailments! 
 
I really hope your furry son comes home he can help you feel better yeah
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........

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