Vascular surgeon appointment

[Devoid]

Hi just wondering what to expect from an appointment with vascular surgeon. I have LVV which showed on scan in upper body vessels and left side. Have struggled with steroids, now on steroids, methotrexate and now 2nd week of tocilizumab Have so far been seen by rheumatology consultant

[PMRpro]

Why have you been referred to a vascular surgeon?

[Devoid in reply to PMRpro]

Have experienced pain and altered sensation in left arm, and leads to chest pain and fatigue if I use it . Example, carry things or lift it up above chest high. I have had a scan to check for blockage but whilst it wasn’t conclusive it was decided there wasn’t and this appointment was made

[PMRpro in reply to Devoid]

Is someone thinking of subclavian steal syndrome?

[Devoid in reply to PMRpro]

It’s not been mentioned but I have been aware of this when researching the symptoms

[Suzym2u Moderator Vasculitis UK]

Vasculitis doesn’t usually come in the realm of a vascular surgeon but it will be interesting what they say.

[PMRpro in reply to Suzym2u]

No, but some of the alternative causes of the symptoms would and the vascular lab would be the place to check for a lot of the effects of LVV such as potential aneurysms, restricted blood flow resutling in peripheral arterial disease and the SSS I mentioned. Not all vascular labs take direct referral by a GP.

[Brantuk]

Hi Devoid - I too have GCA /LVV. Unfortunately the disease can weaken any aneyurisms that you already have in your aorta. The thing they check for in the scan is if the weakening causes the growth rate to increase - if it grows too fast and gets near 6cm diameter then there's a very real chance of a rupture. Ambulance folks tell me the survival rate for ruptures is very low - usually fatal - and only half the patients who make it to the operating table alive actually survive. The vascular surgeon will go over the scan with you and discuss any widening of the arteries or aorta. They can fix aneyurisms with a variety of stents depending on your particular needs (often via keyhole surgery) or you might get referred to specialist surgeon for more intrusive surgery. I don't mean to panic you but it's important you know what to watch out for. I'm on mtx and pred like yourself and I have an abdominal/thoracic aneyurism (5.1cm), I also had one on my ascending aorta which got too big too quick (over 5.5cm) and I had arch replacement surgery last year. So do make sure you discuss measurements and inflammation levels in your tubes when you see the vascular surgeon. good luck

[Devoid in reply to Brantuk]

Thanks for your response, had pet ct scan in the summer and no aneurysm at that point, Consultant today thinks it’s possible nerve problems due to all the swelling, She is organising mri scan , nerve test and Doppler . Hopefully she’s right and if not happy to be under her care as she was so approachable

[crhp194]

I take mtx and folic acid. I have taken it for GCA, discovered during open heart surgery and PMR. Have taken it for 3 years and have had no problems with either drug.

[winfong]

I see a vascular surgeon (for LVV). He was originally recommended by my cardiologist. I think the idea was to make sure that no damage had been done, and to monitor that going forward. I must admit this was all part of early diagnosis, when it wasn't sure what I had, and I was seeing a lot of different specialists.