Yet another question

[PE1234]

I seem to keep hearing my pulse throbbing in my ear .Is this one of the effects of cll or something else ? It's driving me potty .B

[Newdawn Administrator]

It sounds very much like pulsatile tinnitus in which you can appear to hear your own heartbeat rhythmically. It's usually caused by;

'blood flow changes in the blood vessels near your ear or an

increased awareness of the blood flow near your ears'

It's more irritating than dangerous and aggravated by stress I've found. Can also be caused by narrowing of the artery in that area.

We do have lymph nodes that swell in around the ear area however so best to mention to your doctor if you're concerned. However, it's not an unusual occurrence but can be indicative of some level of hearing impairment if there are other tinnitus type symptoms.

I don't think its necessarily CLL implicated unless there's nodal involvement. Any concerns I'd have your GP take a look.

Newdawn

[PE1234 in reply to Newdawn]

Thanks Newdawn

After I posted this on the site it suddenly stopped.i did get myself in a bit of a two and eight about it I'm afraid .As regards to seeing my G P .i think I have more chance of seeing God .

I will mention it though when I go to hospital on Monday for my bloods to be taken .

B

[Myrddin in reply to PE1234]

A nurse at the surgery should be able to take your blood pressure or visit large chemist for reassurance if you can't do it yourself at home.

I can always get an appointment with a dr but might have to wait a day or two to see MY dr - but that was also the case 15 years ago too so no real change. Worth following up when you have your bloods done.

[PE1234 in reply to Myrddin]

Thanks Myrrddin

I have a blood pressure monitor at home as I have had high blood pressure for over twenty years which I take meds for .i think every now and then I am getting a bit panicky stupid I know but we are what we are .

You are lucky as regards to your Dr .Our surgery have taken over another one and you are lucky if you get an appointment in two to three weeks .All the old doctors there have either retired or left .Its a shame as we have lived here for twenty seven years and never had to wait for an appointment so long

B

[Cammie]

B

In respect of your doctor as a cll patient you should get priority with appointments!

Also if anything is worrying you speak to your specialist nurse at the hospital!

You should have been given numbers to call if you get a temperature or feel unwell?

Don't be concerned about using them!

I was told not to call my GP but to call direct to the leukaemia unit whilst under their care.

Don't let your doctors receptionist get away with fobbing you off! Inform them you have cll and should get priority appointments.

I am sure your doctor would agree but the administration do not understand the condition!

Geoff

[Hidden]

Hi B. Priority same day appointments took me a while to achieve. My GPs receptionists were acting like part of a triage system. Until one day I'd had enough and refused to tell them what was wrong with me. I asked for their name and said I was going to report them. Finally, the practice nurse added a note on to my digital records and I haven't had a problem since. Once I nearly missed out on a pneumonia jag because the receptionist told me I'd have to pay £45. The practice nurse also sorted that out for me. If all else fails, I tell them I have leukaemia and that gets me a same day appointment.

We really do have to be our own health champions and be proactive.

Squeaky wheel get the oil.

[Newdawn Administrator]

This has been discussed before and is only relevant to the UK but as a cancer sufferer with an enduring chronic condition that may necessitate an unplanned admission to hospital, we as patients have the right to ask to be included in the list of vulnerable patients identified by GP surgeries as part of their contractual obligations with the Health Authorities. I'll post the link that explains the contractual obligations surgeries are required to undertake (I believe some have opted out).

bma.org.uk/working-for-chan...

It's known as the ES (Enhanced Service) and requires surgeries to identify up to 5% of their most vulnerable patients who are likely to challenge secondary medical services if not dealt with promptly. This means a key worker in the surgery has responsibility for drawing up and discussing a personalised care plan with you. It also requires the surgery to give that patient a SAME DAY response from a medical professional be it by phone, visit or appointment.

I've been included on that list and received a meaningless care plan which I re-wrote and returned to my GP. I've also quoted it when I've asked for advice and told them I'd read the contract they'd signed with the Health Authority (I bet they love me!).

We don't get many perks folks so let's embrace this health initiative! Contact your Practice Manager for advice. You'll only be included if your situation could necessitate an unplanned hospital admission and as one would imagine, tends to include the much older, frail patients but also chronically sick younger ones.

Newdawn

[PE1234 in reply to Newdawn]

Thank you Newdawn ,I will do that .

Have a nice day B

[AussieNeil Partner Administrator]

Excellent advice Newdawn. I'd just add that even if you are generally well, but have particularly compromised immune system with a poor neutrophil count and low levels of antibodies (the medical terms are neutropenia and hypogammaglobulinemia/immunoglobulinanaemia), then you should be able to see your GP on short notice if you become unwell. Ask your specialist what to do in such a situation. as you may well be advised to go straight to hospital emergency rather than first seeing your GP if you are running a high temperature. If your specialist recommends going straight to emergency, then make sure that the closest hospital has your details on record including the fact that your specialist has recommended this so that you will be seen promptly. If your neutropenia is low enough (which is usually the result of treatment and can happen suddenly up to a year after FCR treatment), then you are at risk of febrile neutropenia. Febrile neutropenia (FN) is defined as an oral temperature >38.5°C or two consecutive readings of >38.0°C for 2 hours and an absolute neutrophil count <0.5. It is a serious, life threatening illness that requires urgent (we are talking hours) attention. If this happens to you, get someone to drive you or call an ambulance and make it clear that you are at risk of FN.

Neil

[jaypax]

Sound advice. I've experienced febrile neutropaenia on 4 occasions during my chemo which involved hospitalisation. I would just add that you should phone the hospital A&E unit or CDU to inform them that you are coming in. That way they will aware of your visit & should avoid you having to hang around in the waiting area amongst all the bugs! Also wear an medical alert bracelet or tag at all times - you never know when the info will be needed.

Jaypax

[Ansll]

I can talk from experience because I have had the same pulsating sound in my ears for 6 months. I had to see a NTE surgeon to confirm the diagnosis that the lymphoma had moved around my ears and throat. Grummets were put in my ears so I could hear again and drain the fluid away. Since that time I had the pulsating sounds and feeling as if I was sitting in a plane. Last week the grummets were removed and all the symptoms gone, huray!!! I am now on Ibrutinib for 8 weeks and doing well but suffering neutropenia again with big mouth ulcers so back on the steroids again!! I am pleased for the rest with my progress as I was able to complete a 3 day overnight hike ok, mainly bothered by the developing mouth ulcers....

I try to keep enjoying yourself despite all the setbacks.

[Ansll]

Sorry I meant: I try to keep enjoying myself despite.........

[Newdawn Administrator in reply to Ansll]

You've had a thoroughly miserable time with this Ansil and its a good warning to have these things checked out if they become persistent.

Hope Ibrutinib sorts things for you and you go from strength to strength!

Newdawn

[Ansll]

Thanks Newdawn for your kind words. My neuts count was a big fat 0 yesterday and lc 0.5, so I am in big trouble again. Hopefully the steroids start to kick in soon!! I think I am going to be kind to myself and take Endone to give me a sound sleep without pain..