Hello everyone I've only just joined this group... I found it by accident when researching information for "Normal Kidney Cyst" which I was diagnosed for recently, through finding out by accident that I had very high blood pressure ( even though I had a health check in April this year and passed with no problems ) so after a few weeks of having my blood pressure taken , urine sample given, was told I had a UTI and was given 7 days Antibiotics which cured it.. I was referred for a Ultrasound Scan which discovered the Normal Kidney Cyst but by doctor is also referring me to have a Scan, which I'm waiting to attend..So I decided to do some research which lead me to the ADPKD info..It all sounds a bit daunting as my dad had an Aneurysm when he was in his 70'S and died from a stroke at 88 so I'm wondering if it could be in my family.. I'm thinking of the worst but hoping for the best, as there's no cure..
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One cyst is nothing to worry about, and is in fact quite normal and common the older you get. Up to about 5 cysts is definitely not PKD I believe, PKD is hundreds. An abdominal ultrasound should have found out whether it's just the one or more cysts, especially after the age of 30 it's very reliable. Not sure where the crucial age is exactly, in children the cysts don't always show up. But not sure why you had an ultrasound - if it was for the bladder it may not have looked at the right area. Did your dad have kidney disease? If he lived to the age of 88 he would have known. PKD often only gets symptomatic in the 40s.
Hi atropa, Thanks for the reply..Things have taken a different turn..Got letter today and now waiting to have a Flexible Cystoscopy, which I've looked up as I'd never heard of it and now I'm worried in-case they have seen something..Nothing runs smoothly.....Just as I was getting prepared to have the scan the goal post has changed..
Hi atropa my Gp recommended the ultra sound to check if there was any problems with the kidneys as I had a UTI and was given antibiotics for a week which got rid of the infection. The ultrasound found that I had a fibroid and a normal kidney cyst, then she said she would send me of for a scan to make sure there were no underlying problems but then today a letter came from the NHS which said after studying my case they have decided to send me for a cystoscopy. So I'm waiting for the appointment..
Hi Atropa my ex partner as got PKD, He is 52 and being prepared for dialysis now. my daughter as just had an ultrasound but nothing showed up, do you recommend she gets tested again, she is suffering a lot of lower back pain, Her 2 Aunties have already had kidney transplants and it unfortunately been passed on to their children too ?
glad to hear your daughter is clear for now, hope it stays that way How old is she? Until 30 years of age an ultrasound is not totally reliable, and until 15 it's very unreliable from what I understand, but best to discuss this with your GP. I take it she/he has discussed the pros and cons of knowing or not knowing with you?
Hi, thanks for your reply, she is 22, our GP is not very helpful, I will go back with her and explain it is causing her anxiety. She never explained anything just referred her for the ultrasound. My daughters Granddad passed away at the age of 36 because he did not know he had it, Hypertension caused him to have a massive heart attack, I think this is one of the main reasons she wants to know. xx
GPs are often not very familiar with PKD, it's not part of their training. Your daughter could ask for a referral to a renal consultant for what I think they call genetic counselling. The GP may not be aware of the worrying - it is something that often escapes them as they have so little time with the patient. There are drawbacks to having a diagnosis, so this needs weighing up carefully, the consultant should be able to help with this.
When did she have the last scan? If recent, I'd say it's looking very positive for her. And having her blood pressure checked and controlled if necessary would be a good idea anyway, even for healthy people. Same for a healthy lifestyle and drinking plenty of water really - won't harm in either case, and could be an important investment for the future. And to take paracetamol rather than aspirin/ibuprofen. But there are other important considerations, like when to plan a family, etc. If she mentions that to her GP she should definitely get the referral, but I think she will anyway. Or has she tried already?
Here's a bit more information: Ultrasound is currently the most practical screening test for ADPK. Ultrasound can detect cysts in nearly all people
with the ADPKD gene who are over age 30. It does not use dyes or radiation and is relatively inexpensive.
Ultrasound may be negative prior to the age of 30 in 20 percent of patients who carry the ADPKD gene. For that
reason it is important to remember that a negative ultrasound test before age 30 does not exclude the condition actually
being present. CT scans or magnetic resonance imaging (MRI) can increase the sensitivity for diagnosis
somewhat, but these tests are more expensive. The CT scan also uses x-ray dye which may potentially damage kidney
tissue and both of these tests still have a false-negative rate of 15 percent before age 30. CT scans are sometimes
used in patients with ADPKD to diagnose complications like bleeding into a cyst or the presence of kidney stones.
From PKD Foundation Fact Sheet
I've no idea why they've been ordering scans, but I'm sure they have their reasons. I don't think there's any indication that you might have PKD. The fact they're now looking at your bladder means they probably think your kidneys are fine. Sorry if this doesn't help much, but there isn't really enough information. Best to wait for the cystoscopy. Good luck, hope they'll find everything ok!
Welcome. If the letter was from your GP, you can always ask her/him what the reason for the investigation is. If it's from the hospital, it might be harder to get through to someone who knows, but they should have written to your GP to explain. Some doctors are very good at keeping their patients informed, others may need a little encouragement But I'm guessing from what you've said that they're really just wanting to make sure everything is ok.
I have only just joined this site so have just seen your post. I was diagnosed as having PKD when I was 16 (Im 56 now) and have always had high BP which is controlled well. A few years ago I had a random MRI as my kidney specialist recommended it because PKD can cause other issues, one being brain aneurysms. To say I was shocked was an understatement and has been difficult to cope with ever since. My Mum died of a brain haemorrhage many years ago and also had PKD. Little seems to be known about the link between the two but through my investigations onto many sights since my diagnosis there is strong evidence of a family link. Dont want to add to your worry but its worth knowing
Im just trying to make contact with people with this brain problem to share stories and ease some of the fear..
Hi again Andrea,
I replied on the other thread, but just to say that there are different types of brain haemorrhage, with difference in prognosis. The type common in PKD is called subarachnoid haemorrhage, caused by rupture of a berry aneurysm in the circle of Willis. The connection with PKD is well known, at least amongst the specialists. It is due to the connective tissue weakness which is part of PKD. When you see a renal consultant at hospital they will check your risk factor and offer you an MRI if indicated. The prognosis for subarachnoid haemorrhage is much better than the common type of brain haemorrhage. Also berry aneurysms don't always rupture, so it's important to know where the aneurysm is, how big it is and whether it is getting bigger and how fast.
There's a bit more information on this blog, but again it's mostly about screening: roughlykidneyshaped.wordpre...
Thanks again for getting back to me. I do have berry aneurysms but one in particular they are watching with MRI (I have my annual one on 4/12/16) Nothing has changed in 2 years but that's not to say it never will.
I am under a Neuro specialist and kidney specialist so I guess that's all that can be done. The next stage is vascular, coiling if I'm going down that road???? It is borderline size but the final decision is mine only. There is a risk of procedure and that's what I'm struggling with.. of going into hospital well and active and taking the gamble of not being so coming out!
Apparently, although I have PKD my specialist informed me I have also inherited something called modifiers that slow the rate of the deterioration of the kidneys. That's a plus and a new one to me! And maybe be of good for other members with PKD to know.
Just so hard living with the fear of a rupture... and I think the expression stuck between a rock and hard place is really quite apt!
Apologies for rambling!
that's a really difficult situtation to be in, and I've no idea what I would do in your place. I really don't envy you, and am so sorry you have to struggle with this. As you say, you just can't tell whether it might rupture or not, they really don't understand aneurysms very well. It's a good sign it hasn't changed, but it's not a prediction. I've only briefly looked into treatment options so really don't know much here. Surgical options have improved much, but of course there's always a risk. I totally understand what you mean. I was offered an MRI because of my family history, but after much consideration decided against it because I just don't know what I'd do if they did find anything, and I didn't fancy living with the constant worry. So I decided to go with prevention as much as I can (diet and herbs), not to worry and hope for the best! But I wouldn't recommend this head-in-the-sand approach due to the risks. It is possible to survive a rupture, and recover, but I don't know what the chances are. It is of course a huge gamble if you know you have a risky artery. It's good that you've seen the neuro specialist. Did they give you any percentages as to outcome?
I do hope you do the right thing, whatever that may be! And don't apologise for rambling, you have every excuse to
Yes it certainly is a difficult one especially having 1st hand experience of haemorrhage victims including my close friend and my Mum 30 years ago..weirdly who was my age 56!
My aneurysm that is being watched through MRI is 6.5mm not small but under 7mm (which they recommend as a size for coiling) I have risk ratio which was 3-4% of a risk of anything going wrong when coiling but at a rate of 0.5% per year risk resulting in 18% risk of haemorrhage if I don't do anything if I live till age 80 approx.
The risk of surgical intervention (clipping) carries a higher risk but mine can be coiled as it is a berry one but not in a good place on the posterior communicating artery.
Eek! I've learnt to accept it all but can honestly say it doesn't get any easier. I'm on another website also trying to speak to someone who has this and maybe had surgery but in the end it's an individual decision.
Going to have another good chat with my Neuro guy after this MRI on 4/12 and just pray to God nothing has changed or grown!!
Thanks for everything again
Regards on a very chilly Saturday morning in the UK
sorry for late reply. Those statistics do look very convincing in favour of coiling if you do go over the 7mm, don't they? But fingers crossed it won't reach 7!!! I've no idea if they can be shrunk, but there are things you can do to prevent expansion. Not much research on it, I admit, but the cause of aneurysms is a weakness in the connective tissue, which is the fault that is also causing the cysts and predisposing us to diverticular disease. Bioflavonoids strengthen connective tissue, especially those found in red/blue/purple berries, with hawthorn and rosehips particularly indicated, but even strawberries will do. Of course it hasn't been tested on patients with PKD, but as berries are very safe (unless you are on a postassium restricted diet), the potential benefit to harm ratio is high
Yes fingers crossed for a good MRI result.. but it's hard living with the fear nevertheless... I'm still looking for people who have had coilings to get their stories.
The aneurysms can't be shrunk and one can only try and prevent ie keeping BP low, !not smoking etc.. but a lot is just genetics.
I have a good healthy diet, never smoked and have lots of excercise so can't do much more. Will let you know of any other findings or if I ever make a difficult decision to treat it ahhh!
why not have a look on the PKD Yahoo group? There's a disucssion on aneurysms at the moment, and it's a much more active group than this one so you might find people who have had coiling.
Things are never 'just genetics' - there's always lots of things you can do to influence your predispositions. Great you have a healthy lifestyle, that means a lot
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