First appointment with Dr Mortimer in May... next steps to expect?

[Chiquitita]

I wanted to update you on my progress since my last post, which was my very first in this forum. I am so grateful for all those who responded! It is great to get support and guidance.

So a brief recap and update here:

-I woke up with a very swollen left foot for no reason one morning at the age of 45

-Stress fracture was suspected (?) but ruled out after X-rays and MRI which just showed "subcutaneous swelling"

-Referred to a vascular surgeon who came up with a wild theory that my menopausal hormonal imbalances could be the reason for my swollen left foot and told I should take Ibuprofen a couple of days and it would "go away"

-Driven by my common sense who was telling me this has got to be "something lymphatic", I made a private appointment to have a lymphatic drainage massage by a therapist who is used to treating lymphedema and she said she was in no doubt whatsoever that I have lymphatic fluid in my foot and this is lymphedema (probably "primary lymphedema tarda"), that the vascular surgeon had no clue and was talking nonsense and she urged me to get medical attention to be properly diagnosed by a specialist, and have a lymphoscintigraphy scan done etc...

I have been battling with the system and thankfully through work I have medical insurance... Millions of phonecalls later and after a very stressful period which has partly made me sick (just the frustration of battling against Drs who don't know and don't care...I have been loosing my hair and getting one bad cold after another, which is very strange for me) I managed to get an appointment with Dr Mortimer at the Parkside Hospital, though this won't be until mid-May. Basically, so far nobody from the medical establishment believes I have a lymphatic problem, they keep telling me only people who have cancer have lymphatic issues (?) and yet nobody is willing to offer an explanation for my swollen foot.

While I wait for the appointment, I have made some sort of progress on my own. I am from Spain and travel regularly to see my family. During one of my trips, I went to what we call an "Orthopedic Shop", which is something I don't think exists in the UK in the same way (?). It's like a medical aid shop where you can buy anything from a wheelchair to a prothesis for a missing lymb, any kind of medical gadget... Everyone who Works there is a trained physiotherapist. I had the chance to consult a wonderful expert in compresssion garmets who is completely fully trained nurse-physio. She saw my foot and instantly recognised its lymphedema (again she said she had no doubt at all). She measured me up and gave me under the knee compression stocking and also ordered a made to measure foot glove, as it seems my lymphedema is mainly affecting my toes. Since wearing the stocking, the swelling has massively improved. I should receive the footglove soon, I am sure that will be very helpful. Frankly, I don't know what I would have done without all this help while I wait for an appointment...I'm amazed that just going into a specialised shop and talking to someone who understands this disorder I have received a much better service tan battling with Doctors...

Anyway... as I wait for my appointment with Dr Mortimer, I would like to get prepared in some way to know what to expect? I'd like to have an understanding of what next steps are for someone in my situation as in, assuming he does a diagnostic test that confirms I have lymphedema, what kind of care/treatment is available for someone he has seen as a private patient and who has not had cancer (ie, primary lymphedema). The reason why I'm anxious is that for example my private medical insurance initially said they do not normally cover MLD unless it is after cancer treatment... so I'm wondering what kind of attention primary lymphedema patients are usually entitled to get and how much of it (if any!) can be covered? After my consultation with Dr M, presumably I will be in a situation where I can buy/order compression stockings in the UK?? I'm nervous about this, I don't know how the process works once a patient has obtained a diagnosis... who prescribes the stockings, the GP?

Thanks all again for posting comments and questions on this forum, I have learned so much by just reading.

[naominorthenellis]

Hola Chiquitita!. well done you for being so proactive when you visited your family in Spain. Primary lymphoedema is definitely the poor relation to secondary lymphoedema in the UK; and I come across too many people with primary lymphoedema who have been isolated without any help or support. All very frustrating as the treatment protocols are the same. I too have primary tarda bilateral lymphoedema and recently went to see a vascular surgeon through the NHS as i wanted to have a lymphoscintigraphy scan so that i could understand where the breakdown in my lymphatic system is, but i was told that i wouldn't get it on the NHS as the condition of my legs is very good and I was obviously taking good care of myself... had i presented with ulcerated legs and impaired mobility then they would have given me a scan. I do take good care of my legs; i exercise, wear compression, have regular massage and use my lympha-press very regularly - all at considerable financial cost that i pay for myself. Private healthcare companies do not like to pay for ongoing treatment as there is no end date; you will always need to have regular massage/compression. Even though you are seeing Prof Mortimer privately - once the official diagnosis is there the NHS should look after you as much as they are able to with the provision of compression garments and depending on the area you live in you may get the odd massage. Good Luck with your appointment with Prof M - he is very good and held in very high regard within the lymphoedema community. NNE

[Hidden]

I first saw Proff Mortimer at Parkside. He is a wonderful Physician to consult with, calm and as his discipline commands, precise and very empathetic. I remember the consultation lasted 30 mins which was time enough to give a succinct case history and for a thorough examination. I do not remember being weighed or my height measured at that consultation but it must have been. He then wrote a very detailed letter to my G P and L'odema Nurse about how to care for my particular, very bad, secondary Lymphodema but he also diagnosed Lipodoema.

As I self funded I am not really any help about your main concern but I know someone else on the board will be able to help you.

[novembergirl]

Hello from me too! As Naomi says you've been very proactive getting help for yourself - well done but isn't it a shame that you have to fight so hard to get a proper diagnosis. Anyway, the good news is that with a definitive diagnosis you should at least be able to get compression garments on the NHS. I believe the allocation is two sets every six months, and they are prescription items. My son uses toe caps, thigh length and knee length garments in various combinations. These are the absolute cornerstone of lymphoedema management, together with good skin care and MLD/compression pump therapy if you can access it. My son uses cream called Doublebase that you can get on prescription to keep his skin moisturised, and gets occasional MLD. We have supplemented that in the past with private therapy, including intensive weeks every few years. He has had lymphoedema for nearly 17 years (from birth) and is doing just fine with this active style of management. Hope the consultation with Prof M goes well - he is very experienced and nice. Best wishes

[Christina38]

This is just a thought and requires you to carry on being pro-active: I suggest you see your GP and ask if they can prescribe another compression stocking for you, if it is helping. My daughter has recently been diagnosed with primary lymphoedema aged 13. We had a battle to get the diagnosis, since it was just her foot initially. Her lymphoedema nurse said that the compression stocking works the best after it has been washed, so you get the best results from compression if you can wash the stocking daily, but needless to say, this is easier done if you have more than one stocking. You will have to persevere with the NHS. (At a conference last year Professor Mortimer said the NHS stands for "nothing happens soon"!) Good Luck and carry on posting updates! Christina

[jinger]

Hi Chiquitita. Mine started with a swollen foot too. I had been battling with my surgery to get some kind of proper diagnosis for around 8 years to no avail. They've told me to lose weight, it's 'one of those things and will go away eventually', given diuretics which made me ill etc). Then as a last straw I went to see a new GP at the practice and went in and asked for my foot to be chopped off as I was so fed up with it! He took a quick look at it, prodded and poked it and told me he thought I had lymphoedema, he knew it wasn't curable and I would need to wear compression stockings for the rest of my life. He didn't know anything else about the condition and didn't even know where I could get treatment. He wrote it down on a bit of paper and asked me to look on the internet to see what I could find! A week later I went back with contact details of a clinic I could get to and he referred me over. It's now 3 years since and I have had knee and thigh high stockings, a basic medical history taken and been told I have primary lymphoedema caused by previous knee operations. Now I know more about the condition after lots of research and talking to others on the internet that have lymphoedema and/or lipoedema, I believe I have secondary lymphoedema caused by lipoedema (also known as lipo-lymphoedema) as looking back over the years the symptoms I have experienced over the years since puberty points more to this. I have not had any scans done (apart from checking I have a pulse in my feet with a doppler), my nurse says I am not bad enough for MLD (even though she says I am stage 2) and refuses to teach me it or SLD so I can do it at home. Below knee stockings cause my thighs, hips and knees to balloon and thigh highs keep falling down and flopping around my knees if I don't use glue. Both types of stocking pinch at the front of the ankles (I have also tried circular and flat knit stockings too) and my nurse says I have to put up with it! I have approached my nurse about the lipo-lymphoedema and she doesn't seem to be bothered about looking into it (probably too busy or budget restraints for her clinic or she doesn't know much about lipoedema). I'm not having that so have asked for my GP to refer me for a second opinion to Dr Keeley (who works at Nottingham Queens Med and Derby Royal). Apparently I had an appointment at Queens Med last Tuesday but the first I knew about it was when I got home from work that evening, there was a missed call from the hospital, it was too late to ring them so I contacted them the next day. They had apparently sent a letter out (which I didn't receive) and because I hadn't phoned them on the day of the appointment, they'd discharged me! So I've now had to go back to my GP and ask to be re-referred

Hopefully being under Prof Mortimer, you won't have the nightmare time like I'm having. I've heard lovely things about him and he's very thorough but my GP won't refer me to him and it's too far for me to travel to see him. I'm hoping once I see Dr Keeley I'll get better treatment, but if I don't, I'm not stopping until I do!

[lovesradio]

Hi everyone, your replies to Chiquitita are so lovely and supportive. I just had a couple of wee things to add. Once you have seen Prof Mortimer and been properly referred to a lymphoedema nurse or similar, s/he will write to your GP to authorise your GP to prescribe the correct compression garments once what you need has been determined. Also, an earlier post mentioned Doublebase for moisturising, you can get on prescription but also reasonably cheaply from Boots pharmacy counters while you are waiting for prescriptions to start.

[Rosesibbs]

Hello... You have indeed been proactively excellent.. You have fought a battle which I believe should have been given to at first right. I know that depending on where you live, lymphoedema treatment should be available on the NHS. MLD is not available long term but this is assessed individually. Mr Mortimer is excellent and very precise. Take along any scan results and investigations previously done... He is most likely to prescribe long. term compression management with hosiery. Almost all garments are now available on prescription. Yes indeed 2 garments are given every 6 months but this is just a guide. Depending on how often you watch them and also your relationship with your GP. Some GP do understand and will give you what you require. Bear it in mind that garments cost from £30 - £150. Variable (this is not what you pay but you will just pay the normal prescription cost per pair which is I think £7.20) . Most of these are available on prescription just be aware some chemists with charge per leg per stocking. It is advisable if you are on other medication for you to take a medical pre- payment scheme it helps if you are on 2 or more medication per month.. Lymphoedema is manageable but not curable and is indeed a long term condition. It sounds like you have unilateral primary tarda. Have a think about prescription pre- payment... There are now a lot of garments available which are image acceptable.. Including blue and pink colours.. Take control and manage the lymphoedema and don't let it control you... Good luck with the appointment you will be in very safe cab able hands on of the best not only in the uk but in the world.

[jinger]

There are some stockings that have one prescription charge (£8.10 currently - it's gone up Rosesibbs) no matter how many or what combination of colours are ordered. I have Jobst Elvarex made to measure ones and order two pairs at a time - one pair beige, one pair black. As the measurements are the same (including silicone band and t-heel, knee high), I only pay one prescription charge. The last lot I ordered was through my local Boots pharmacy and I had a phone call to say I hadn't paid enough and needed to pay 3 more charges for the 4 individual stockings. I wasn't chuffed and kindly advised the pharmacist to check the product in the Drug Tarriff book as I was to only pay one charge. He didn't believe me until I walked in with a page printed from it to confirm I was right and slapped it down in front of him! You can find a pdf version of the book online here ppa.org.uk/ppa/edt_intro.htm and is updated monthly I think

[clown]

I really wish you the best of luck. You are seeing the "guru". However I had high hopes and was bitterly disappointed when I wanted a follow up appointment and he refused to see me saying just get compression socks and you will be fine. I am in pain and struggling feeling very rejected