Leg Ulcer Treatment Advice Needed?
Posted , 14 users are following.
Hi
I was wondering if anyone could offer any advice or suggestions.
I am 36 years old female and have suffered from a non healing venous leg ulcer for just over 5 years now and have attended leg ulcer clinic twice a week ever since. It started as a small scratch on the front of my left leg after hurting it on a bike pedal. I seen to have had a bad reaction to everything which has touched my leg including double base with exception of the inadine dressings.
I have been previously treated using the 2 layer and 4 layer compression bandaging and inadine dressings, which was changed on 8th November 2013 to Juxta Cure Compression Wrap (which I personally prefer) by the Vascular Nurse along with Alginate Dressings and ended in my leg being infected for 5 months as nurses kept saying my leg didnt look clinically infected and refused to swab it, this resulted in me being unable to stand or walk for 8 months (can stand and walk for about an hour now but still in some pain) due to the burning and stinging and the amount of pain I was in.
Over the last 3 months I have been back on the inadine dressings, infection free and finally seen a little improvement each week. Last tuesday (5th Aug 2014) I attended the ulcer clinic as normal but seen another nurse which was covering staff holidays and who hasnt been back in clinic since decided I didnt need the inadine dressings and prescribed Prontosan Gel (I am already using Prontosan Would Irritation Solution).
At the time I explained my concern to changing from Inadine dressings to the prontosan gel as I have previously had a bad reaction to nearly everything else that they have tried including the Inadine powder (cant remember exact name off top of my head sorry) which I was assured I wouldnt have a reaction to as I was ok with Inadine dressings. I was reasured that I wouldnt have a reaction and it would be ok.
The prontosan gel has been on my leg 7 days (changed on Tuesdays and Fridays) and my ulcer is already shown signs of infection (waiting on swab results), however they still insisted on keeping me on the gel yestarday and my concerns were once again brushed under the table. The ulcer itself was looking quite healthy and better than it had ever been while on the inadine dressings, yestarday it looks darker than its been for the last few weeks, and the area around the ulcer is now white and looks thicker (not sure if this has an exact name).
I was under a new consultant at the hospital who booked me in for a deep vain scan which came back clear (I had waited for the scan for 4 months before finding out the old consultant hadnt even booked it). He was happy for me to continue with the compression and discharged me. The nurses have tried to referred me back to the hospital consultant again but there has been no follow up from my GP surgery on this and no one can tell me why just that they will look into it.
I am not sure what to do next. I have tried raise my concerns regarding my treatment etc with both the district nursing team at the clinc and my GP but dont seem to get anywhere.
Also I am worred that having my leg washed in a plastic bucket filled with tap water wont be helping my leg, sometimes when my ulcer has been bleeding they water obviously becomes discoloured due to the blood and the nurses use this same water to wash my leg including the ulcer. Both hands although they do use gloves are in the water then touching my leg, the clean swabs, cream etc, doesnt that spread infections especially if when my leg is already infected?
I have got to the point now I just dont know what to do, not only is it affecting myself but also my husband with having to take time off work to look after our 4 children doing school runs etc.
Sorry my post is so long and thank you for taking the time to read it, I would really appreciate any advice or to hear from anyone else in who has been through the same thing.
Thanks
0 likes, 19 replies
jean170939 Twinkle_Toes
Posted
i have osteoarthritis in the knee of same leg and because the ulcer not healing prevented me from knee replacement
the pain from the ulcer was severe and the nurses said the pain would be better once the ulcer was healed
finally they told me the ulcer was ok but the pain is still there worse
the pain all around where the ulcer was and in the bone to the ankle
i now have to walk with a cane
i
tried so many pain medications
the doctor keeps prescribing me the same ones
what i want to know is why the pain is along the bone or if it is nerve pain?
Twinkle_Toes jean170939
Posted
Hi Jean
Im so sorry you are suffering with the pain. From my own experience I am lead to believe that the majority of the pain is caused by the nerve endings being exposed which can cause severe pain and also painful burning sensation.
You said about Varicose Veins and ulcers taking long time to heal. The length of time it takes can vary depending on how bad the Varicose Veins are. I had Lazer Surgery (May 2017) as my Varicose Vein in that leg was really bad, at that point I had the ulcer 8 years, now 5 months on and I still have the ulcer but its smaller than its ever been and is finally healing slowly. However, until 3 weeks ago I had an other ulcer on my right leg for 7 months, again I have a varicose vein in that leg also but the damage to that vein isn't as bad and the ulcer finally healed without the laser surgery (although I am currently on the waiting list).
Do you attend a Ulcer Clinic or GP Surgery to have dressings changed, If so make sure you request they wash your leg especially the ulcer area properly. My Ulcer Clinic were told to stop washing legs for health and hygiene reasons and just to wipe them over with what looks like a very thin baby wipe. After being seen by Dermatology, I was told my leg must be washed properly in a bucket of water (unless proper leg wash baths are available) at every dressing change. This helps to prevent any infections, build up of dry skin etc which will only cause more pain and suffering which we don't want. If they can't or won't wash your legs at the dressing change, is there anyway you or someone your know (a relative or friend) could wash them at home for you before your have your dressings changed. I now remove my own dressings and bandages and wash my legs at home myself before attending the Ulcer Clinic or Nurse at GP Practice twice a week and it has made massive improvement in my legs and reduced the pain.
Please keep going back to your GP until you get the pain under control with the correct medication. If you feel nothing is helping ask to be referred to the Pain Management Clinic who will be able to access your notes and offer better pain medication for your symptoms. Also ask them to swab your ulcer to check for any possible infections even if you don't have any signs of the infection itself, also if there is an infection and you are given antibiotics, sometimes 1 week supply isn't enough to get rid of an infection fully so if you need or think you might need a 2nd weeks supply please see your GP again.
If your doctor is prescribing the same medication over and over again and they are not working please ask to be seen by a different doctor (you are well within your rights) for a second opinion. There is a lot of different medications out there its finding the right one that works for you.
Hope this helps a little and you get the pain under control.
vickylee1980 Twinkle_Toes
Posted
Hobo have had a venous ulcer for 9 months now nowhere near as long as urs!!!! I am inland out of hospital with infection it bleed out 2 lit red last week I had to have a blood transfusion,if my partner wasn't there tie a belt round top of my leg to stop the blood I probs would of died,I also have 4 kids they are fed up of it the pain right now is intense and like that all the time.I have even felt suadiodal at times.I've had honey on which burns badly,I've had this green gel one on which stuck to my ulcer and had to put it in water to get of.i previously have been seeing about 4-5 different district nurses that it different droughts on a one.im now seeing the vascular nurse once a week and the same nurse once a week with 2 layer coban on and this reds tough painted all around my ulcers.i have a appointment with the vascular consultant.im on pregabalin for the pain which does naff all.im seriously in so much pain I don’t no what to do.i hope urs gets better soon x
Twinkle_Toes vickylee1980
Posted
Hi Vickylee
I am so sorry your have suffered so badly.
You said you were on honey, how long does the burning last? I was on honey dressings previously on my left leg and sometimes had burning/stinging which came and went but only lasted for about an hour after each dressing change. I was told if it got worse, didnt go away or I couldn't stand the pain it caused to remove it straight away and get seen asap by nurse.
If any dressings are sticking badly to your ulcer especially if they have to then be soaked off which then causes more pain ask to have a different dressing put on your ulcer. If any dressing is sticking that bad they will cause trauma to the ulcer just by removing it which in turn causes more pain and takes the ulcer longer to heal.
Im glad to hear you are now seen by a Vascular Nurse every week and not just District Nurses. This will make all the difference to your treatment you receive as the Vascular Nurses are specialist trained in this area and have a better understanding of leg ulcers.
When you see your Vascular Consultant, make sure you ask any questions you have doesn't matter if you repeat your self over and over, the main thing is make sure when you leave every appointment you are happy with whats been said and have a plan of whats happening next. If your not happy with anything at all tell them. I have seen 5 or 6 (lost count) Vascular Consultants in the last 8 years and now finally got a consultant that actually listens to what I have to say, takes the time to read my medical notes and follows everything up and makes sure I am 100% happy before leaving the room.
As for the medication you are taken if it doesn't help please keep going back to your GP and asking for something else, don't suffer with the pain. Also, it may be worth asking your nurse to swab your ulcer to check for infection even if there is no visible signs of infection, which again can cause alot of pain and burning sensation.
Is there anyone (relative, friend or even a support group) that you could talk to about how you feel. Sometimes it helps to talk to someone else or someone who has been/going through the same thing. Please try not to let it get you down too much, I know its easier said and done, and remember you will get through this but it will take time.
Hope this helps a little.