Renal Cyst Questions

Posted by samuellandon @samuellandon, Nov 22, 2020

Hi, I'm new here, this is my first contact.

I'm not sure where to begin or how much to divulge at first. The short of it is that I have a very persistent, very productive renal cyst, left kidney upper pole, anterior. I have complained of abdominal pain for twelve years, the last two I have been very ill and in pain. The only relief is when I get the cyst drained which has occurred four times, one of those was laproscopic surgery to remove the cyst membrane…but, it came right back. Since that surgery I have been told there is nothing else to be done. The last two times that it has been drained I opted for local anesthetic and the moment the pressure is relieved, I am relieved, and the symptoms subside…..then it gradually reasserts its dominance over my life in the form of lethargy, pain, shakiness, nausea…the works.

Am I in the right place to ask questions and try to get some help?

Hello @samuellandon and welcome to Mayo Clinic Connect. I understand you are interested in getting help and answers. Connect is a community made up of members like you going through a variety of healthcare situations and experiences who are looking for support and supporting one another. We are not providers but do offer support to one another.

That said, I wanted to share a previous discussion that might benefit you to get started.

– Renal Cyst (previous discussion)
https://connect.mayoclinic.org/discussion/renal-cyst/
Can you share what your main questions are for which you are looking for answers so members can best provide support?

REPLY

Well, I'm determined to not live on pain meds…. My insurance doesn't appear to cover any more options, and I'm getting passed around urologists like a bag of money at a party. And, to not be too harsh, I don't feel like I'm being taken seriously when I ask about alternatives to the only surgery that appears to be available in my impoverished location, that has been performed and has failed to relieve the problem as the cyst has re-emerged in the exact location with the exact symptoms as before.

So, I am asking, "Are more options available?"

What I would like, is to have a doctor that believes me when I report serious pain and sickness and that the cyst IS the culprit. And, then explores what, if any, remedies exist seriously.

REPLY
@samuellandon

Well, I'm determined to not live on pain meds…. My insurance doesn't appear to cover any more options, and I'm getting passed around urologists like a bag of money at a party. And, to not be too harsh, I don't feel like I'm being taken seriously when I ask about alternatives to the only surgery that appears to be available in my impoverished location, that has been performed and has failed to relieve the problem as the cyst has re-emerged in the exact location with the exact symptoms as before.

So, I am asking, "Are more options available?"

What I would like, is to have a doctor that believes me when I report serious pain and sickness and that the cyst IS the culprit. And, then explores what, if any, remedies exist seriously.

Jump to this post

@samuellandon Are you able to get to a Mayo Clinic campus in Fliorida, Arizona, or Minnesota, or to a large teaching hospital? That might be your best bet. Have you researched any alternative treatments that you could present to your medical team?
Ginger

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@gingerw

@samuellandon Are you able to get to a Mayo Clinic campus in Fliorida, Arizona, or Minnesota, or to a large teaching hospital? That might be your best bet. Have you researched any alternative treatments that you could present to your medical team?
Ginger

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I am able to get to a Mayo Clinic campus. I am in West Virginia….so, a flight, is a flight, is a flight as they say… which makes any location viable. I haven't been able to work in two years because of this thing so money is tight, and I wonder if a Mayo Clinic affiliate in Mexico is a good option. But, I have my last resort playing out right now. I'm seeing a new doc in Pittsburgh, imagery tomorrow, first visit second week in December. If this doesn't get anywhere, I will need to make new arrangements fairly rapidly…The pain and associated illness are very bad.

REPLY
@samuellandon

I am able to get to a Mayo Clinic campus. I am in West Virginia….so, a flight, is a flight, is a flight as they say… which makes any location viable. I haven't been able to work in two years because of this thing so money is tight, and I wonder if a Mayo Clinic affiliate in Mexico is a good option. But, I have my last resort playing out right now. I'm seeing a new doc in Pittsburgh, imagery tomorrow, first visit second week in December. If this doesn't get anywhere, I will need to make new arrangements fairly rapidly…The pain and associated illness are very bad.

Jump to this post

@samuellandon I did not see that Mayo Clinic has an affiliate in Mexico. Your frustration in not finding a solution must be taxing!

By the time you read this, you will have imagery done, and then be waiting for your appointment in early December. May I suggest having your previous procedures and dr visits written down, copies of lab reports and progress notes if you have them, copied and ready to give to new dr. Have you kept any journal or history of pain/symptoms? That would help give a complete picture, also.
Ginger

REPLY
@gingerw

@samuellandon I did not see that Mayo Clinic has an affiliate in Mexico. Your frustration in not finding a solution must be taxing!

By the time you read this, you will have imagery done, and then be waiting for your appointment in early December. May I suggest having your previous procedures and dr visits written down, copies of lab reports and progress notes if you have them, copied and ready to give to new dr. Have you kept any journal or history of pain/symptoms? That would help give a complete picture, also.
Ginger

Jump to this post

Yes, I have all my records, I keep a daily journal of phone calls, symptoms, appointments, to do list, questions. I am prepared for the visit. The problem lies in anticipation. I have been passed around to to G.I., Nephrology, Neurology, three different urologists, three different Interventional Radiologists. I wait several weeks and months for appointments and when I get there I have to reply the two year account, then without fail I am told that cysts don't cause these symptoms and further testing or imagery or try these pills….and I'm exhausted.

I am prepared for the the same response at this latest appointment in December, so I'd like to start gathering answers and options. The Mayo Clinic has published some very interesting procedures for the treatment of what appears to me to be my condition. The RIRS (Retrograde Intra-renal Stent) for beginning.

Can we begin that conversation? About how do I get to a doctor that performs this procedure or is in a position to to recommend a procedure or treatment that can deliberately confront the cyst that has caused me pain for over ten years, and made me sick for over two years now.

REPLY
@gingerw

@samuellandon I did not see that Mayo Clinic has an affiliate in Mexico. Your frustration in not finding a solution must be taxing!

By the time you read this, you will have imagery done, and then be waiting for your appointment in early December. May I suggest having your previous procedures and dr visits written down, copies of lab reports and progress notes if you have them, copied and ready to give to new dr. Have you kept any journal or history of pain/symptoms? That would help give a complete picture, also.
Ginger

Jump to this post

Just an idea that crossed my mind. I had searched "Mexico Mayo Clinic" and the search returned "International Services at Mayo Clinic Mexico" I would be pleased to visit the Minnesota Campus.

REPLY
@samuellandon

Yes, I have all my records, I keep a daily journal of phone calls, symptoms, appointments, to do list, questions. I am prepared for the visit. The problem lies in anticipation. I have been passed around to to G.I., Nephrology, Neurology, three different urologists, three different Interventional Radiologists. I wait several weeks and months for appointments and when I get there I have to reply the two year account, then without fail I am told that cysts don't cause these symptoms and further testing or imagery or try these pills….and I'm exhausted.

I am prepared for the the same response at this latest appointment in December, so I'd like to start gathering answers and options. The Mayo Clinic has published some very interesting procedures for the treatment of what appears to me to be my condition. The RIRS (Retrograde Intra-renal Stent) for beginning.

Can we begin that conversation? About how do I get to a doctor that performs this procedure or is in a position to to recommend a procedure or treatment that can deliberately confront the cyst that has caused me pain for over ten years, and made me sick for over two years now.

Jump to this post

@samuellandon I wish we could take pain away. Could you please keep us posted on your December visit?

REPLY

@samuellandon, how did your appointment go with the new specialist? What options will you be exploring?

REPLY
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