Monitoring PAD

[MichaelJH]

PAD (peripheral arterial disease) affects many people on this forum. Whilst PAD is more frequently seen in those with diabetes and heavy smokers it is also seen in others with atherosclerosis in the coronary arteries, cartoid arteries, etc.

Since the amputation of my lower left leg due to complications of PAD I have obviously been concerned about the wellbeing of my right leg going forward. I have had two follow up telephone appointments with vascular services. Despite the fact I have reduced circulation in my right leg the policy seems to be to treat issues as they arise with no routine checks, i .e. reactive rather than proactive, . Personally I would have expected yearly Doppler, ABI (ankle brachial index) and probably an ultrasound scan. If problems were found then either a CT or MRI scan.

Am I maybe expecting too much? What do others, particularly those with PAD, think?

[lettingoffsteam]

I don't have PAD but I think that the lack of ongoing monitoring marks the difference between NHS and private care.How are you getting on re. your new leg Michael?

[Speakeazi in reply to lettingoffsteam]

I have just come out of the private system as the insurance company will not pay for any monitoring and even if there was an issue I’m not sure they’d cover it. And I’d rather be in a big nhs hospital if they need to do something than a private one where there is no oncall team.

[lettingoffsteam in reply to Speakeazi]

I think there's arguments both ways.After all plenty of people are waiting for months for nhs treatment at the best of times and now it's unbelievably slow.Agreed that you have all the back up in an nhs hospital.Personally private health care is not an option but I know a number of people who have benefitted from it.Why did you seek private care?

[Speakeazi in reply to lettingoffsteam]

I had insurance and used it. But once diagnosed I was informed that they wouldn’t pay for any monitoring. I paid myself for Doppler scans and a follow up with consultant for a few years.

I think it is v useful to get a diagnosis quickly and if it is not a chronic condition I think going the private route is very useful.

[lettingoffsteam in reply to Speakeazi]

Yes, you are probably right but for those where money is no question service is first class.Sadly not for me.😁

[Forestdweller]

I have pad, in both legs, right worse than left. I have been waiting for an appointment with the vascular team since before I even knew about my coronary arteries and had a stent. My gp ended up sending another letter since and I have been finally been sent an appointment for nov, nearly a year after finding out about PAD. My initial letter from vascular to gp was that they didn’t want to see me due to covid and in any case they would treat me conservatively.... without even looking at my feet/ legs 🤷🏻‍♀️ my initial observation is that legs and feet are an after thought. I feel totally abandoned by them to be honest. My right leg feels terrible most of the time so probably a mess in there and I’m still no further than the initial ankle brachial test. I would have hoped that they would be pro active with this stuff but it seems not.

[MichaelJH Heart Star in reply to Forestdweller]

I feel for you especially as you are also a long term Type 1 diabetic. Will reply more later as have an appointment. All the best, Michael...

[MichaelJH Heart Star in reply to Forestdweller]

Unfortunately the treatment of PAD in the UK trails behind the US and Western Europe. This means the UK has a higher rate of amputation. I had an angioplasty to my left leg in 2013 and follow ups annually until I was discharged in 2017. I was referred again by my GP in the autumn of 2019. After a lot of messing around I got an appointment for early April but lockdown happened. A few days after that date I developed a small ulcer on my left big toe. After endless delays I had an angioplasty which failed in mid-July. A short while later I became a uniped! Is this really good enough?

[Forestdweller in reply to MichaelJH]

I think NO is the right answer. As much as I think the NHS is great it is also a lot of the time Tesco value healthcare. It is health care but they will do as little as possible and spend as little as possible. A lot of that is due to poor and frankly inadequate funding. I’m sorry you have been through all of that, I fear or rather I know but have my head in the sand at the mo that this will be a similar story to me. I hope you are recovering well though. Take care.

[Speakeazi in reply to Forestdweller]

Walk walk walk. It hurts but walk!!! Walk until it hurts, stop and carry on as soon as you can. It builds little collateral vessels which can form an extra blood supple. Look at the Circulation Foundation website to find some home exercises.

[ellj]

I would have expected an annual Doppler as a minimum.

That is what I get but having said that I was due around end of September and haven't heard anything so probably not happening this year with Covid .

Ellie

[MichaelJH Heart Star]

The nurse-practitioner here in rehab did a Doppler and I was pleased to hear "woosh woosh" even though the ABI remains an unknown! 😒

[Love101cats]

Have you any idea how much could be saved if medical care was proactive and not reactive? Has anyone done a survey asking that question? Members of this site would, I believe, give some astronomical figures.

[Speakeazi in reply to Love101cats]

We know the best treatment for PAD initially is a supervised exercise classes. And they just don’t exist in most area. One unit has branched out into Zoom classes

[Speakeazi]

Absolutely we should have annual checks.

My big toe has been painful and yes at night. I’ve had a Doppler scan which seems to show there is blood in the foot. Lots of missing pulses and my ankle indexes ( indices?) have dropped a little but they were done elsewhere previously. Now having a ct angio in a few weeks. And an X-ray of my feet. I had the pain about 8 years ago and the gp thought it was gout but the footman said no

possibly arthritis or msk.

I’m really pushing the exercise and good eating. But tbh I am terrified.

I can’t help see anything other than a very bleak future esp at 3am.

Hope you are ok and making some progress

Take care

[Adaboo]

I’m sorry to hear you had an amputation, your GP should be doing an annual ABPI check really! But if you buy the old fashioned type of bp cuff and a hand held Doppler plus gel you can do it yourself. The problems now with PAD are that we are all sent to vascular surgeons who have of course learnt how to balloon, stent or bypass, but they have mostly never followed new techniques or bothered to learn them!! What’s needed is an interventional radiologist! They are the skilled ones at opening arteries etc, and we do have them here! PAD runs in my family, dad ended up with amputation. People don’t realise that having CLI is a worse prognosis than having bowel cancer!

[MichaelJH Heart Star]

The problem with self funding is that it is limited by personal circumstances. Whilst many could pay for an angiogram a bypass would be another matter!

[Somerford]

Folks I’ve taken time to read Michael’s story and many others. I feel so sorry for him. And I pray all will go well. I am a newcomer to PAD. My GP failed to spot it three years ago and I was being treated for arthritic probs in lower spine and hips. I was affronted when the Ortho Surgeon said there was nothing wrong with me after many months of investigations. CT and MRIs

I am nearly 80 consider myself fit. Cycle and attended the Gym. One year ago while on the treadmill - bang. I took excruciating pain on my right calf. I thought I had torn a ligament. Not so a visit to my GP and things started to roll. Outcome PAD.

I have had two opinions. One of the surgeons had me booked in for an operation in my iliac artery. I attended the pre-op meeting with a second surgeon from the same surgical team, who advised not to go for it. COVID had got in the way. And he more or less said if you can suffer it best leave it alone.

My son has friends who are surgeons and radiologists and a third opinion was sought as I was in a dilemma. Their advice was that there were too many unknowns.

That’s where I am. I still cycle with an e-bike. Walking is painful but I try.

My question to you guys who have gone through this is:

How long does it take before something bad happens like an amputation?

I am fit. Do not have diabetes. I’m on the usual medication including Praxilene although I don’t think this is really helping.

Sorry for the length of this story.