Deroofing Kidney cysts

[Jessica Giardino]

Anyone here had deroofing of kidney cysts done and what is the
recovery time?

[Diane]

Jessica are you getting this done? My experience is second hand. I have never had the procedure done, but Thelma has had great results from it. She describes a sandbag left in place for several hours following the procedure and told not to move; to lay very still. Wendy had it done at the Mayo was really disappointed with the results.

This is useful for pain relief. It always has to be repeated. It is a temporary fix, not permanent.

Warmly,
Diane

On Dec 4, 2011, at 6:23 AM, Jessica Giardino wrote:

Anyone here had deroofing of kidney cysts done and what is the
recovery time?

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[jeffner88]

I had the deroofing twice in a month it worked for relief a short t ime.

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[jeffner88]

Oops I had liver cysts done twice not kidney

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[Diane]

Jennifer did you have one cyst done?

I wish Thelma is out there; perhaps she is a member of a different support group but she had it done in Europe and the docs made her lay absolutely still for 2 hours with a sand bag over the area.

~Diane

[Marie Ursitti]

I had a kidney cyst deroofed and cauterized when I had my liver resection. It was the size of a grapefruit. When cysts are cauterized Dr. Nagorney said they don't come back. He also cauterized the cysts I had in my liver remnant.

[jeffner88]

No but they were in my liver also

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Diane <smith...@mac.com> wrote:

>Jennifer did you have one cyst done?
>
>I wish Thelma is out there; perhaps she is a member of a different support group but she had it done in Europe and the docs made her lay absolutely still for 2 hours with a sand bag over the area.
>
>~Diane
>On Dec 4, 2011, at 9:35 AM, jeffner88 wrote:
>
>> I had the deroofing twice in a month it worked for relief a short t ime.
>>
>> T-Mobile. America's First Nationwide 4G Network
>>

[saman...@verizon.net]

Hi Again - I also wanted to mention that I had deroofing done of my liver cysts but not cauterized, only deroofed. That surgery was done in Dec 2007. That procedure was a total waste of time, didn't last at all. It was also very painful afterwards. Finally in April of 2010 I had my liver resection. That was when I had the kidney cyst cauterized.

Marie

Dec 4, 2011 11:23:11 AM, polycysticl...@googlegroups.com wrote:

===========================================

[Soo]

I had it done on one 15cm cyst, without the sandbags.

I was in the hospital for 10 days and a lengthy recovery after (a few
months at least).
It was done by a general surgeon after a visit to the ER and no
knowledge of PLD by me or the surgeon.

My current liver surgeon says the hospital stay for a typical
fenestration/deroofing s/b only 2 days or so with a few weeks
recovery. She was thinking of doing one on me so we discussed it at
length.

Either way they cysts seem come back in a couple of months.

I've also had aspirations done on 2 8cm cysts for pain relief. I was
out of the hospital 2 days later (I was in for something else) and
feeling fine for a couple of months, no recovery time needed.

[Soo]

Bah, need to learn to read.
Mine were Liver cysts, not Kidney cysts.

> > recovery time?- Hide quoted text -
>
> - Show quoted text -

[Jessica Giardino]

No, I am asking the question that another person asked on another
support group board. I am interested in knowing the real question and
that is: Do kidney cysts grow back after they have been deroofed and
cauterized? Dr. Nagorney said they don't. So, the thing to do is make
sure they cauterize after the deroofing-right?

[Diane]

Wendy had a cyst deroofed at the Mayo. Hers returned.

~Diane

[Marie Ursitti]

That is what Dr Nagorney did for me during an open proceedure which was done when I had my liver resection. I don't know if they can cauterize cysts with a laparoscopic procedure. I know they deroof with a laparoscopic procedure because I had that done as well in Manhattan at New York University. The doctor who did that procedure knew very little about liver cysts. He deroofed but didn't cauterize. If you want to call me here is my phone number 917-566-5034

Jessica Giardino <jessgi...@gmail.com> wrote:

>> > On Dec 4, 11:23 am, Jessica Giardino <jessgiard...@gmail.com> wrote:
>>
>> > > Anyone here had deroofing of kidney cysts done and what is the

>> > > recovery time?- Hide quoted text -
>>
>> > - Show quoted text -
>

[Diane]

CYST DEROOFING

Kidney cysts do return, according to Dr. Valente who does the surgery laparoscopically. 

According to Dr. Nagorney's article, liver cysts also return after a liver resection. 

A deroofed cyst almost always returns. I think Thelma's is one case where she developed new ones, but the past ones did refill. She might also be the one whose docs use a sandbag.

I am not sure how a doctor could cauterize a cyst unless one was having open surgery, like a liver resection. I heard of another woman Mary who had an 8 hour surgery where the doctor did open surgery and deroofed several kidney and liver cysts.

My liver resection has been an exception without any new growth of liver cysts. I have never had any cysts deroofed. During my open liver resection surgery, Dr. Nagorney flipped my liver this way and that trying to fenestrate as many as possible of the visible liver cysts. Many many more were present deep within the liver tissue.

~Diane

[Marie Ursitti]

Cysts that are only deroofed do return as mine did after my laparoscopic procedure. During my resection I had a kidney cyst deroofed and cauterized and was told it wouldn't return. My liver remnant had less than 15% cysts on the surface. Those were cauterized, and not to refill. I was told just recently about 4 weeks ago , by Dr. Torres that I would never have any regrowth unless I were to get pregnant. Estrogen and all that. I had no problems with my bile ducts, no compression of my Gena Cavas at all. Even one of my resected lobes that was removed was clean, but it came out anyway. I think everyone s case is different. For me I was lucky never had liver pain prior to surgery only bloating and fullness. I was 42 when I had my surgery, perimenupausal, which is a plus. Only had one child at 38, only took birth control for a year when I was 28 yrs. So its all relative. That's my situation.

[Thelma Heinrich]

I do not have PKD but I had a very large liver cyst deroofed/carterized at
Mayo, Scottsdale/Phoenix hospital several years ago. It did not refill but
I was lucky most of the cyst was exposed, not incased in the liver. Reason
for having it doing, it was bleeding inward and filling up more causing very
bad pain. When my cysts decide to grow, they get very large. I had a
resection about 17 years ago. That cyst was very large and the doc. had to
remove my gal bladder in the process.

I have been reading posts this last year but not posting. I was diagnosed
with stage I invasive lobular carcinoma breast cancer in March. This breast
cancer is fed by estrogen. I had 2 tumors connected with a fine thread that
were 3 cm total. I went into surgery at Mayo, (the best breast cancer
clinic in AZ, my openion) knowing if the tumors were seperate I would have a
mastectomy. When I woke up from surgery, I was still intact. I went
through recovery and 6 weeks of radiation with flying collors. Then came
the 5 year pill that is recommended for killing any mycroscopic particle
that may have been left behind. They remove all esterogen and we live on
esterogen, go figure. These pills are bruttle with bad side effects. I
took 2 different ones that caused unbarable pain. I finally tested positive
to take Tomaxifin, yes Tomaxifin does not work for everyone. I am starting
my 2nd month of Tomaxifin today with side effects. The side effect that
really bothers me is blood clots. You literly have to change your
lifestyle. Can't cross legs, can't sleep with pillow between your legs,
can't sit over an hour, etc. I am tired all the time, can't sleep I feel
like I have aged. I was very active and healthy at 71 before surgery. I
have been spending most of my time on the breast cancer serviver list.

My sister has had stomach aches for years and has never had an MRI so her
doc. talked her into having one. She is 67. Guess what, she has PLD. The
doc said we will just watch them. She was so upset but I told her they may
never grow to cause her problems. They don't seem to be causing any
problems so far. Nexium has helped her stomach problems.

Since my last liver surgery I have been fine. Just occasional pain from
scar tissue. I don't expect much liver cyst growth in the next 5 years as I
don't have any hormones left.
I have come to the conclusion that maybe it is not so great to have all
those natural hormones if they cause other problems. I have always been
impressed that I have aged gracefully but not so sure any more. But life
must go on.

Thelma
Scottsdale, AZ

[Diane]

Dear Thelma

I am so sorry you have invasive lobular breast cancer.  I am really glad your liver cyst did not return.

Is there a reason the docs did not remove your ovaries and uterus? I had mine removed for similar reasons:

one sister with breast cancer

one sister with ovarian cancer

and I had a huge fibroid.

I have been tested for the breast cancer gene and if I had it (I tested negative) I too would have gone on to take Tomaxifin. Even without tomaxifin it is like I am on blood thinners. I bruise easily, have a prolonged bleeding time and have to get this checked regularly.

Your sister has PLD. Does she also get yearly mammograms? One year (because I am high risk) I got an ultrasound and mammogram. The next year I got an MRI and mammogram and last year I got breast nuclear imaging and a mammogram. The percentage rises when we get two studies plus do monthly self examination from 30% to 97%.

~Diane

[Thelma Heinrich]

Diane,

 This is my 4th type of cancer.  I had cancer of the uterus, had a hysterectomy but I still have my ovaries, 2 kinds of skin cancer, not melanoma but my brother died from it so I am at risk and now breast cancer.  I no longer have breast cancer, I had surgery at Mayo.  The best doctors and nurses and they will follow me the rest of my life. 

 

The doctor says my type of breast cancer is strictly caused from high estrogen levels at my age.  It does not mean that my sisters will get breast cancer.  My body produces more estrogen so that is what caused the tumors to grow.  But they have no way of knowing if you will get it or not and do not treat you before you get it unless you are at high risk, family history. 

 

I have no history of breast cancer.  I had a great aunt, never had children, higher risk died from BC and a first cousin that died from BC.  According to the doc. these two relatives do not put me at high risk.  I have had numerous mam's and repeat mam's, fibroid cysts, other tests and 3 biopsies and finally the news was bad.

 

My sisters are both aware and getting their mammograms.

 

Thelma

Scottsdale, AZ

 

 

 

----- Original Message -----

[Diane]

Your 4th cancer, what do the docs say about that?

Cancer of the uterus

Breast cancer

and two skin cancers

I am glad your sisters are aware. My own sister will not get a mammogram, no matter how I try to explain it to her and she  is the one who survived ovarian cancer.

I am very  cautious with my cancer checks. My father had PKD and lung cancer. My mother had PKD and no cancer. Two of my sisters also had cancers.

Is it that your liver has decreased metabolism of estrogen, is this why your estrogen is so very high? were you or are you a meat eater? My sister, the one who had breast cancer (she also had PKD and PLD) loved meat and loved eating butter.

I always preferred vegetables.

~Diane

[Barb]

I have heard that deroofing is permanent but that aspiration without sclarosing is not.
Barb

Sent from my iPhone

[Barb]

Are they sure that it is the same cyst?  Or is it a new one that popped up?  

Barb

Sent from my iPhone

[Diane]

More importantly Wendy felt it returned.

~Diane

[Jessica Giardino]

linkinghub.elsevier.com/retrieve/pii/S0094014301800136
said that in Laparoscopic management of PKD deroofing of
cysts...leftover wall and base is fulgrated with a cautery to prevent
recurrence."

So, that is telling me that it must be cauterized or it will grow
back. Diane, you said Wendy's deroofed cysts returned but you didn't
say if it had been cauterized.
Has anyone had a cyst deroofed and cauterized? Did it grow back or
not?

On Dec 6, 4:22 pm, Diane <smithdi...@mac.com> wrote:
> More importantly Wendy felt it returned.

> linkinghub.elsevier.com/retrieve/pii/S0094014301800136

> ~Diane
> On Dec 6, 2011, at 12:50 AM, Barb wrote:
>
> > Are they sure that it is the same cyst?  Or is it a new one that popped up?
> > Barb
>
> > Sent from my iPhone
>

> > On Dec 5, 2011, at 12:46 PM, Diane <smithdi...@mac.com> wrote:
>
> >> Wendy had a cyst deroofed at the Mayo. Hers returned.
>
> >> ~Diane
> >> On Dec 4, 2011, at 1:37 PM, Marie Ursitti wrote:
>
> >>> I had a kidney cyst deroofed and cauterized  when I had my liver resection.  It was the size of a grapefruit.   When cysts are cauterized Dr. Nagorney said they don't come back.   He also cauterized the cysts I had in my liver remnant.
>

> >>> Diane <smithdi...@mac.com> wrote:
>
> >>>> Jessica are you getting this done? My experience is second hand. I have never had the procedure done, but Thelma has had great results from it. She describes a sandbag left in place for several hours following the procedure and told not to move; to lay very still. Wendy had it done at the Mayo was really disappointed with the results.
>
> >>>> This is useful for pain relief. It always has to be repeated. It is a temporary fix, not permanent.
>
> >>>> Warmly,
> >>>> Diane
>
> >>>> On Dec 4, 2011, at 6:23 AM, Jessica Giardino wrote:
>
> >>>>> Anyone here had deroofing of kidney cysts done and what is the
> >>>>> recovery time?
>
> >>>>> --
> >>>>> You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.
> >>>>> To post to this group, send email to polycysticl...@googlegroups.com.
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>
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>
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>
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[Diane]

I don't know. You will have to ask Wendy.

I have never had this procedure done. I just went straight for a liver resection some 15 years ago and I have never regretted it since.

~Diane

[Jan Meeks]

Hello ladies,

I went to my new liver Dr. and he talked about people who have pld also experience heart and brain problems, down the road. He said some people experience aorta issues and develop murmurs and brain vascular issues... that can lead to tia's or strokes!  I wondered if anyone has heard of these happening as you progress with this disease.  I had a lot of blood work and some ct scans will be done of my brain and heart.  Wow!  kind of in shock!    Jan

[Diane]

Dear Jan

Let us know what happens with your tests. It is good your doc is checking you for everything. How is your blood pressure? how is your cholesterol?

HEART DISEASE or LVH

Individuals with PKD and with PLD do develop LVH, Left ventricular hypertrophy. This is much more common in males due to the absence of female hormones. We with PLD are a bit more protected because our polycystic livers do not metabolize estrogen as a normal liver would. This greater circulating estrogen protects us some ways from heart disease, but not to a great extent. Beyond a certain age women catch up with men in their risk. This is one reason the PLD Diet or the PKD Diet is both heart friendly and liver and kidney friendly.

HEART ATTACK PROOF DIET

I watched a you tube video by Dr. Esselstyn   http://www.youtube.com/watch?v=AYTf0z_zVs0. I tried this diet for about a month. It is vegan with no oil. I added no soy, no wheat, no nightshades, etc. I had my cholesterol value tested before I began the diet and again after only one week on the vegan diet. It worked just as Dr. Esselstyn predicted. My normally low cholesterol dropped 15 points to be even lower.

MURMURS and FLUID AROUND THE HEART

These are very common with PLD and PKD. They should be checked out but generally are of no consequence. I have both: a murmur and fluid surrounding my heart. I have a normal EKG always.

STROKES and BP

Strokes is another story. Strokes comes about from labile high blood pressure. This is one reason I check my own blood pressure nightly. PKD blood pressure rises at night different than essential hypertension which is low at night. This is due to the aldosterone mechanism. This is another reason to limit salt, to take gentle walks daily and to eat heart healthy. When doing all this I do not need to take blood pressure medications.

ANEURYSMS

This is 30% more common with PKD and PLD and is generally increased if a member had an aneurysm.  I was tested and do not have any aneurysms. If one is present there is a coil that can be inserted to prevent the aneurysm from bursting.

TIA's

I asked the same question about these and was told it is related to the brain vessels. If these carry soft plaque that can break off sometimes surgery is done to rid the body of this. I had a doppler ultrasound of my neck and it is totally clear.

[Diane]

Jan try this page about LVH

http://www.pkdiet.com/pkdanemia.php

~Diane

On Dec 7, 2011, at 4:06 PM, Jan Meeks wrote:

[Barb]

As far as LVH, left ventricular hypo trophy, goes, my nephrologist changed my Bo med from an ACE inhibitor to an ARB. My BO came down and after a couple of years the ventrical's thick walls were normal. 

Barb

Sent from my iPhone

[Diane]

Wow this is great Barb. Can you explain once more what  it is your doc did? This is fantastic. 

I do not take BP medication so I am not sure what ARB is. 

~Diane

Tee hee glad you no longer have high B.O. 

[Barb]

An ARB is an angiotensin receptor blocker. All you basically have to do is to lower the. Loos pressure enough so that the thickened walls of the left ventrical of the heart can rest a s. or work so hard.
The heart is basically a muscle, and when muscles are o reworked, they thicken. This is not good for the heart.
Barb

Sent from my iPhone

[Jan Meeks]

I join in with diane, not knowing what arb and bo means...  Jan

[Barb]

Whoops. I should have written BP for blood pressure. It was a typo. 

Barb

Sent from my iPhone

[Jan Meeks]

Thank you Barb! What is arb?   Jan

[Diane]

This is an acronym for a receptor site blocker.

~Diane

On Dec 9, 2011, at 2:35 PM, Jan Meeks wrote:

Thank you Barb! What is arb?   Jan

From: Barb <bar...@aol.com>
To: "polycysticl...@googlegroups.com" <polycysticl...@googlegroups.com>
Sent: Thursday, December 8, 2011 6:39 PM
Subject: Re: [PLD Polycystic Liver Disease] Re: Deroofing Kidney cysts

Whoops. I should have written BP for blood pressure. It was a typo. 

Barb

Sent from my iPhone

On Dec 8, 2011, at 5:08 PM, Jan Meeks <nhmom...@yahoo.com> wrote:

I join in with diane, not knowing what arb and bo means...  Jan

From: Diane <smith...@mac.com>
To: polycysticl...@googlegroups.com
Sent: Thursday, December 8, 2011 1:48 PM
Subject: Re: [PLD Polycystic Liver Disease] Re: Deroofing Kidney cysts

Wow this is great Barb. Can you explain once more what  it is your doc did? This is fantastic. 

I do not take BP medication so I am not sure what ARB is. 

~Diane

Tee hee glad you no longer have high B.O.