Hi all, I mentioned a few weeks ago that I was diagnosed with Bells Palsy', and put on prednisolone for 10 days, it didn't work, and I was sent to an ENT man, who did an MRI which confirmed that I did not have the Bells Palsy, but they found a small tumour active and moving in my left facial area.
I still have all the symptoms of Palsy and a TIA, but it is definitely not those. I have been told they carrying out an urgent double biopsy of both sides of my neck area, within a few days.
The ENT man said that it is possibly Lymphoma (What exactly is that, and is it the same as CLL) I have recently come off W&W , after a sudden surge and rise, in my Bloods. and have been seen by a locum Haematologist, who said she would review my Bloods and see me in three months. I wasn't offered a copy, and my GP has not received anything from the 'Haematology Department' of my local NHS.
My ENT man, the Haematolgist, and a Cancer surgeon, along with the radiology team are currently coming up with a plan. However I was also told that if it is a separate tumour, it is located in a difficult area to access . In any event he said that it would be a major operation, which because of my age and Medical History, they would not do.
I am obviously concerned, as if it is not Lymphoma, my options seem dire. My eye is still 24/7 open. I have partial face collapse, speech slurring, and dribbling like a baby. There has been no progress at all, and I still use the eye ointment, as well as four times a day eye gel.
Has anyone had similar experiences, or know anything about this particular infliction of mine.
Any views or comments would be most welcome.
All the best to all. Ron
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Vindicatrix
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I want to say how sorry I am that you are suffering like this. A few years ago my daughter worked with a young woman who had a stroke. She had symptoms that were similar to yours. The doctors are working together and that is positive. I hope they can help you, best wishes Anne uk
Sorry to hear of your concerning medical report, for which you frustratingly lack anything in writing. If your symptoms are from a lymphoma or even another type of tumour, it's possible that radiotherapy could give you symptom relief by shrinking it, though again, the placement will determine whether the risks from the radiation are likely to outweigh any benefit.
Have you looked through the related posts (to the right of this post if viewed on a desktop or laptop computer, otherwise below the post) to see if any of these posts are helpful?
At least you have been given reassurance that a plan is being prepared for you.
So very sorry to hear that you are having to go through this but good to see that the doctors are looking at ways to help yo, I guess its a case of trial and error, as for a copy of the report I feel you are entitled to one so maybe ask. Its encouraging to know that the medics are working together to come up with a plan so keep your chin up and remain positive. I notice your name 'Vindicatrix' so take it you are a Vindi Boy, same as my hubby, he has told me some tales........ lol. Take care of yourself and the best of luck x
Thanks Opal11uk, I remember you and your 'Vindi Boy' husband from an earlier post. There were 10's of thousands of Vindi Boys, and most of us are proud of our shared experience.
Thanks for the good advice, I will know more after the Biopsy, I'm rather hoping that it will in fact turn out to be lymphoma, and which seems to have 'effective treatment, and a good chance of remission and a fairly good quality of life.
The tumour is the worry, as it is very small, but on the move, and they can't get to it, as it is pretty well inaccessible seemingly.
I have a long history of tumours in that area, and the resulting 'Radium Treatment', so it may be connected to that.
However I will deal with that when I have to, and carry on as usual, until then.
All the very best to you and your 'Vindi Boy'. Ask him if he remembers our 'Five Star' accommodation, the 'Cockroach Cuisine, and the blue cloth 'Duvet' sleeping bags, (The nickname of which, escapes me)
My experience is not exactly like yours but still common in the head and neck aspect of it. Head and neck cancer is difficult because there is so many vital functions involved.
I was dx with CLL in 2011. I started a clinical trial in 2019 with Ibrutinib and Obintuzamab (sp?). I had to stop 2021 due to side effects but it did work well for me clinically as I am in remission still. Shortly after stopping the clinical trial during the pandemic, I developed numbness in my tongue and lip, right side. Neurologist did a MRI and found nothing. Thought I was going crazy. Started getting sores on my tongue and went to an ENT, tongue fine no cancer. Finally, as symptoms got worse, I developed a lump under my right chin. Long story short, finally a US found tumor in the sub mandibular gland. Turned out to be ACC, a rare cancer. Since I have had surgery to remove floor of mouth and part of my tongue on right side. I am now getting radiation for that. I am 71 and in California at UCSF. Not easy situation but living for today.
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