Help Ellie get the urgent treatmentshe needs

Hi everyone, I’m Ellie, I’m 28 years old, from Hertfordshire and I am currently studying for a PhD in pancreatic cancer research. I have suffered with sublingual and submandibular masses with a plunging ranula coming up to 8 years now and have had a total of 10 major surgeries and 2 minor surgeries to remove everything but they’ve been unsuccessful. Due to having so many surgeries and treatments, I have been left with permanent damage to my lingual and hypoglossal nerves (my tongue is half paralysed completely and my bottom right lip). This has also left me with really bad nerve pain, mandibular arthritis, trigeminal neuralgia, lymphodema in my cheek, massater muscle atrophy and chronic migraines. I also have a nasogastric feeding tube for the forseable future as I’m unable to chew and swallow food myself.

 

I have had the surgeries I was waiting for but unfortunately they have been unsuccessful. I have to have treatment at uclh every 3 weeks and am having admissions often due to side effects/intense symptoms of my conditions. 

 

Due to the ranula and masses growing continuously, its putting pressure on my nerves so my right eye can't focus at all and when I am having bad flare ups my eye sight disappears altogether where I can only see outlines of dark and light.

This has lead me to not being able to work much and although I feel very blessed that I have a job to go to when I’m better, I am still struggling. 

 

I am currently being rushed to my local resus in a&e weekly and having to have immediate treatment to reduce the swelling in my tongue and face as I start to have serious breathing difficulties as it becomes an airway risk.

 

I have used all the money that was originally donated to go towards private pain treatments at NHNN London, cranial osteopathy, acupuncture, massage, scans & counselling. 

 

I don’t expect much from this as I know everyone’s had an awful year in regards to money and I’m embarrassed I’ve had to make a go fund me page but me and my family are desperate and if we don’t get some of these issues diagnosed/sorted out urgently, they can become permanent (just like my paralysis of tongue and lip has)

I have also been on morphine for a year now and highly dependent on it so it’s likely that I’ll need to go to a rehabilitation centre during my weaning off time as I’ll be experiencing a lot of withdrawal symptoms that will need medical attention. It’s unfortunately uncommon to be able to get this on the nhs unless I was a serious risk to myself or others

 

Thank you so much for reading my story and feel free to look at my Instagram as I’ve documented a lot of my health journey on there (check my story highlights and posts). My handle is @myphdexperience

 

This money will cover travel fees, consultations, scans, physiotherapy/osteopathy, treatment given be speech & language therapists, rehabilitation and any further treatment needed after we know the condition I’m in once I’ve had surgery (it’s likely I’ll need lymph nodes taken out which can be done privately).    

My parents Jo and Al (will record video from them to add) would like to thank everyone who donates. They’ve really struggled seeing me go through all of this and feel pretty helpless. Supporting me and our family means a lot to us ❤️

We will continuously update here what is happening with the different appts and what I’m using this money for and how it’s helped. We’re looking forward to being able to speed up my process and get help in many areas that I haven’t been able to yet, to aid in a quicker (with the least amount of permanent issues) treatment and recovery

If you’d prefer not go through gofundme, my cashapp is £EllieMariaHurer and my PayPal is PayPal.me/elliemaria95