Fear at forthcoming coiling! Connective tissue issue!

[tillymint16]

Hello all PKD sufferers out there but also anyone with the brain anerysm scenario that can accompany this disease.

Has anyone been told that having PKD puts you at higher risk of rupture during intervention (coiling) as PKD patients have a connective tissue problem that is connected to PKD.

Thanks for any advice as I’m completely terrified at the thought of my forthcoming operation. Also how did your coiling go if you’ve undergone this procedure??

Thanks

Andrea

[cat3]

I've never heard of the connection between PKD and haemorrhaging as I know very little about kidney disease.

But I had my ruptured aneurism coiled 6 years ago and, though I was unaware of all around me before & after, I was told it's a straightforward procedure performed via an artery in the groin, and it basically saved my life.

Try to focus on the fact that brain surgeons are highly skilfull specialists using high tech methods to achieve the best possible results. I'm assuming all will go well Tilly, but sending best wishes for a smooth op and a good recovery......... Cat x

[tillymint16 in reply to cat3]

Many Thanks Cat for your reply it does help immensely to hear from a successful patient after coiling. Did you have a lot of discomfort at the groin area where they use the catheter?

Theres is a lot of negative info on the internet to which I have immersed myself in over the last 4 years!!! Hence the terrible fear I guess.. unlike yourself who thankfully was quite unaware of everything.

Its great to know your fine and it was all a successs 👍🏻do you have PKD. When delving into the studies (it’s like trying to understand Japanese!) I discovered that PKD patients where commonly found to have brain anerysms.

I’m finally happy with my vascular surgeon and learning to trust in his expertise and thanks so much for your good wishes 🙏

Andrea (Tilly) x

[cat3 in reply to tillymint16]

No Andrea, I don't have PKD. Mine was a spontaneous Subarachnoid Haemorrhage and, once I became compas mentis, the doctors explained how lucky I'd been to have reached the hospital and been diagnosed (at my local general hospital) so quickly and blue-lighted to Salford Royal.

My family were told to prepare for the worst so I consider myself very lucky ! But I felt convinced that it wasn't luck at all, but good & swift practice from all concerned and, especially, the skill of my lovely surgeon who later showed me scans of 'before & after' the bleed and asked "So how do you like my work ?"

I had a slight awareness of 'something' in my groin but no discomfort whatsoever. In fact when I was told that the procedure had been conducted intravenously, starting at the groin, I laughed and said 'No, but seriously'...................

The bleed left me with a brain injury resulting in impaired memory, fatigue & other issues but on face value I apear absolutely normal. I imagine coiling itself isn't anything like as intrusive as the contamination of a bleed, so my issues will be very different to yours !

I'm sorry you're dealing with this additional hurdle on top of the PKD ; I hope all turns out really well Andrea.

Hope you'll stay in touch m'dear & let us know how you get on............... Cat xx

[tillymint16 in reply to cat3]

Hi Cat

Thank you so much for your reply it does help so much knowing there’s ‘others’ out there and especially with a success story to tell.

After my long search I’m finally under Walton Neuro in Liverpool so here’s hoping all will be ok. Thought I could live with the fear but feel like life is on hold and seeing as it’s a lucky find and my kidneys continue to be fine...feel that Ive got to tackle this once and for all!!!!

Thanks so much and I’m so glad you came through albeit with a few issues... the brain takes time to heal I guess.. will let you know how I get on .... fingers crossed please!!!!!! X

[cat3 in reply to tillymint16]

Fingers crossed !! ............but if it's Walton you've got NO worries Andrea. They're (like Salford) considered a 'Centre of Excellence' so you're not just in good hands but the BEST !!

Lovely talking with you m'love & look forward to updates............... xxx 🐦🌿🍃

[tillymint16 in reply to cat3]

Thanks Cat

Yes their rep is brilliant and I’m happy with my vascular surgeon... think there’s a lot of folk out there who’ve gone through all this!

Many thanks for you words of wisdom it does really ease my anxiety... I’ve got to put myself in their hands eek ... they’re the experts!

Many Regards and will let you know my date when I get it

Have a nice day

Andrea 🤗

[Bonnieblyth]

Hi tilly my friend just had decompression surgery at the walton centre they were brilliant and she is doing great. Your in good hands there.

Like Cat said these surgeons are highly skilled at what they do but please have a chat with the specialist nurse who can give you reassurance.

I had my annie clipped but the coiling is done same wzy as an angiograph only mild discomfort at the groin and you dont feel the catheter at all.

Good luck let us know how you get on xx

[tillymint16 in reply to Bonnieblyth]

Hi bonnieblyth

Thanks for your reply yes they are renowned for their excellence so I guess I’ve just gotta learn to have faith!! Will let you know how it all goes.... bet I’ll wish I’d got on with it 4 years ago!!!

Regards

Andrea

[Ctenophore]

Hello,

I posted for the first time a month ago because my father has been diagnosed with PKD (meaning I've a 50 percent chance of having it too) and I read that 1 in 10 PKD sufferers go on to develop an aneurysm.

The replies I got mostly said I would probably have better luck posting on a PKD forum.

Anyway, I was wondering if you'd be able to tell me how the aneurysm manifested, what symptoms lead to its diagnoses and how long did it take you to get a diagnosis?

I wish you all the best with your coiling procedure. It seems like you are in very capable hands and it is absolutely fantastic how far things have come since the Victorian era.

Dan

[tillymint16 in reply to Ctenophore]

Hiya Dan

Thanks for your reply and encouraging words. I’ve lived with PKD since the age of 16 when it diagnosed as Mum was a sufferer. Finding the anerysm was a fluke as being 57 the same age my Mum when sadly passed away due to an anerysm that ruptured I thought I better be under a kidney consultant and get on top of regular bloods etc. On hearing my family history I was sent for an MRI that was when they discovered 4... mostly tiny but one that was 6mm to say I was horrified doesn’t even begin to explain what has become a rollercoaster of emotion. I also got the results in a week or so

I have no symptoms of PKD apart from high blood pressure and none at all from the anerysms so it is a lucky find..they couldn’t tell me how long I’d had them .but most are symptomless until something happens.

You can easily have bloods done and a simple ultrasound scan to see if you are a carrier but there are many strains of PKD and something that hasn’t been mentioned are that you can also inherit the modifier gene which slows the disease. Diet, watching protein and soduim levels are recommended and most of all not to smoke are all important ways of helping keep well.

I agree they’re finding new ways in technology all the time so here’s hoping they use some of them on me ha🙏

Regards

Andrea

[Ctenophore in reply to tillymint16]

Hi Andrea,

Thank you for sharing your story and the advice. I was watching sodium intake and I'm not a smoker because I want to avoid heart disease and high blood pressure if I can anyway (I also avoid sugar and diabetes), but I have actually never known about protein metabolism leading to increased kidney damage.

I just turned 28... At a stage where I'm not so keen on knowing if I have a problem like PKD yet, but these things can lurk in your mind somewhere and bother you when there's nothing better to think about. I'm also waiting on my dad to get results of some sort of genetic test he's done.

You had no symptoms, but you keep on top of your health issues and had good doctors it'd seem. I can only imagine finding out something like that. I've read others saying there are people who live most of their lives with aneurysms and never know, though I can't imagine it's a great consolation.

Once again, thank you and best wishes.

Dan

[tillymint16 in reply to Ctenophore]

Thanks Dan

Remember if you have inherited the PKD gene. Technology has come on leaps and bounds and they can even filter that gene out now so that it is not passed on to the next generation!! It’s also a slow developing disease and you can do so much to assist yourself... awareness is scary but it is everything as you can take action and feel in control.

Also I forgot to mention potassium is a big no no ie too many bananas!!! They’re full of it.

Anyway again good luck Thank for your kind thoughts

Andrea

[Bobby16]

I don't have PKD but I'm awaiting coiling and I am frightened.

[tillymint16 in reply to Bobby16]

Hi Bobby16

When is your surgery? I totally understand where your coming from. It’s taken me 4 years to get the courage up as terrified of hospitals and everything to do with them... but can’t stand the worry and black cloud that follows me around and just got to get on with it. Don’t know my date yet but hopefully early 2018.

Regards

Andrea

[Bobby16 in reply to tillymint16]

Just awaiting a procedure date. I think they said in the next 8 weeks. Their seeing me again to discuss it all. I have a lobulated aneurysm to the left MCA.

[Kitten77 in reply to Bobby16]

I had a coil fitted around 13 years ago, I was so scared of the surgery but it helped and I never looked back. About 3 years later I had to have a stent fitted too in to an aneurysm. I woke up pain free first time in a long time. At the moment I have 6 aneurysms which are behaving so haven't needed anymore treatment. Good luck with surgery and if you want to talk I'm here. Take care

[tillymint16 in reply to Kitten77]

Thanks Kitten17 it’s amazing how these little monsters live up there and we don’t even know but like you. Watching my other 3 but awaiting to see my vascular man hopefully before the end of Jan. Awareness is so important. Glad you are hopefully pain free now

Regards, thanks for replying and have a great and healthy New Year🎉

Andrea