The Bells Palsy that Never was, Actually is

General chat
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I was motivated to write this post, by an article sent by Blood Cancer to me this morning, entitled ‘Second Opinions’.

I thought it somewhat coincidental as my last few Posts have been on this subject.

In July I had been told that I was going into Chronic lymphocytic leukaemia (CLL) treatment after 5 years of W&W. About this time I also developed what I was told, was 'Bells Palsy, and put on a 10 day course of Steroids.

This did not work, and I was sent for an MRI Scan, which showed a small tumour travelling from my Mandible area, to my Skull Base.

I was told that it was not ‘Bells Palsy’ but a palsy related to the tumour. I was also told that it was inoperable due to my age and complex medical history. and informed that I would be on Palliative care, not Curative.

i was sent back to the NHS for treatment, as Private care cannot deal with certain serious health conditions. The NHS consultant sent me for a neck and body scan, and a two needle biopsy of my neck, left and right side.

This confirmed the presence of the tumour, but as it was inaccessible, they could not get a Biopsy of it. It also confirmed that my Lymph nodes on my right side neck, and body, had grown substantially, and Chronic lymphocytic leukaemia (CLL) treatment was likely. However, this would be put on hold until the Tumour was dealt with.

I was also sent back on the 29th, September, to the same Radiologist, who tried another method of obtaining a Biopsy. After much contortionist type maneuvering, and discomfort, he managed to obtain a sample of sorts. He told me that he wasn’t sure if it would show what the tumour was. (Result awaits)

Given that the prognosis was dire, in the extreme, I decided to get a 2nd opinion from the ENT man who originally diagnosed my Chronic lymphocytic leukaemia (CLL) in 2018, and who also saw me last year regarding my neck nodes. One of his specialisations is ‘Neck Tumours’., and he is familiar with my medical background.

I saw him yesterday, and I am so glad I did. He checked all my MRI and Cat Scans, and went into a detailed time line from when I first noticed the Palsy, and asked searching questions regarding the symptoms I have had since.

He was surprised at the Palliative, not Curative statement, and also, the fact that an Operation had been ruled out. He is also of the view that my Palsy is in fact a ‘Bells Palsy’, but one that is permanent, as many are.

Given my 40/50 year old mixed parotid tumour history, (Pleomorphic Adenoma’s) with radium treatment, he thinks that it may be a residue from that time.

He is not at all sure that it is in fact a tumour, as if it was, my symptoms would be different, with very painful earache, and neck base pain.

He of course stressed that until he gets a result from the Biopsy, he cannot be one hundred percent sure. He went on to say that even if it was a tumour, be it, benign or cancerous, there was a good chance that it could be operated on.

I had been told by the NHS ENT man that after the result of the Biopsy, that I would be transferred to an NHS Hospital in Edinburgh and come under their Multi Disciplinary Team (MDT)

I was delighted to find that my 2nd opinion ENT man would be in charge of my treatment, as he also works at the Edinburgh NHS hospital involved.

He examined my face palsy, and is sending me for an operation within the next two weeks, on my eye, and mouth, which will not only be Cosmetic, but practical in that I will be able to see clearer and eat without constant dribbling. (It will be a relief to dispense with the straw, and ‘Baby Bib’ I have been using over the last two months. :grinning:

My Chronic lymphocytic leukaemia (CLL) treatment is still on hold, as is my half tooth extraction, until the other matters are resolved.

In relation to my Chronic lymphocytic leukaemia (CLL) I am also getting a 2nd Opinion on the 16th of October. I am very lucky that I am being very much encouraged and supported by my GP and ENT man.

In conclusion, I am aware, that 'Second Opinions can be a contentious issue, amongst some. One of the factors involved is that no one want to upset anyone. Or it may be that they feel that if they ‘Rock the Boat’ their treatment may be affected in some way. Or it may be loyalty to the NHS. (It is fairly easy to get an NHS a second opinion too)

I understand and respect all those reasons for not going down this route, and it is a personal thing, I think. However I would certainly advocate it, especially for life threatening diagnosis.
All he very best to all. Ron

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Wow. @Vindicatrix I just cannot imagine the absolute rollercoaster of thoughts and emotions you must have been going through,
Yes, there is nothing to stop us asking for or getting ourselves a 2nd opinion.
Please do keep updating us and really look after yourself.

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Hi Erica I hope you are well and preparing for ‘Winter Ills’. :confounded:

I was, but not as early as this. I got my first Cold Virus last week, promptly followed by a Chest Infection’

I started a course of Doxycycline last night, and hope it does the trick before my Covid Vaccine on Thursday, and my Flu one on Sunday.

I’m isolating during this time, as I want to be ‘Fighting Fit’ for my 3rd Biopsy, re the ‘Bells Palsy’ that never was.

Can I ask? is it common to get those Chest Infections so early in the season, I seem to have had my fair share of them over the last year. And I am well aware of the importance of dealing with them early.

Regarding my neck Tumour, a Radiologist’ experienced in challenging neck Biopsies is now, 'Having a go;.

The 2nd biopsy was inclusive, but indicated that there my be some cells there which could be problematic.

I have finally been transferred to the MDT Multi Disciplinary Team’ at another hospital, where the ENT Consultant who diagnosed my CCL in 2018, has taken over my care. (For which I am eternally grateful.

The Bells Palsy is permanent, so I am also getting a small nip and tuck operation on my eyelids, and mouth. (Can’t wait) :face_with_raised_eyebrow:

My Chronic lymphocytic leukaemia (CLL) treatment is now not as urgent as it was first thought.

My Haematologist said that the sudden large spike in my white blood cell were probably caused by the Steroid Treatment which I had initially for the Bells. Which I thought was quite interesting.

Nevertheless he does think treatment will commence within 6 months or so,. But he does say that it will need to start within 6 months or so.

I would be interested to know if any other Chronic lymphocytic leukaemia (CLL)’rs have had similar problems with Bells Palsy’ and neck Tumours.

All the best to all. Ron

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Hi @Vindicatrix I am sorry that cannot help with your questions despite having Chronic lymphocytic leukaemia (CLL).
Let’s help others can and I will copy the Blood Cancer UK nurses @BloodCancerUK_Nurses
Also a medical person that knows your whole history might be the one to ask.
Please do keep us posted and really look after yourself.

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As ever, many thanks Erica. Ron

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Hi @Vindicatrix
I am really sorry to read through all you have been put through lately. It is really interesting to learn about others experiences of their own care & the outcome of accessing second opinions.
I get the sense that this latest consultation has really opened up some much needed doors for you & hopefully you are feeling somewhat better that you have a plan in place?
In regards to your query around the early onset of chest infections- the simple answer is yes it can be quite common and the seasons often blur the lines of when viruses are likely to be in greater circulation.
This is common because you are likely immunosuppressed with all your medical conditions. As you know, Chronic lymphocytic leukaemia (CLL) alone can render your immunity at any time of year to be weaker and therefore what may start as a common cold can quickly move to other parts of the air way and need treatment. Therefore I hope you are feeling okay just now?
We hope that you will get your small share now and stay well later into the winter months.

Take good care, Lauran

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Thank you so much for that very supportive and useful information Lauran. It really helps to receive that type of output from our Blood Cancer Nurses. We are so lucky to have you at hand.

I would be interested to here, how other Chronic lymphocytic leukaemia (CLL)’rs deal with regular Virus’s and Infections. Is isolation the answer? I hope not.

Are laryngitis, sore throats, and blocked nasal passages, common, as this is the first time I have had laryngitis, and nasal problems with a chest infection.

Apart from the Doxycycline I am on, I am doing the usual Salt and warm water gargles, along with Honey Lime and hot water drinks. (Have I missed anything)

I was due a Covid jab, and flu jab this week, but have been advised by my hematologist to cancel until the infection has cleared. (I am a tad nervous about the delay) especially if it does not clear, and needs further antibiotics.

I have my 3rd Biopsy (Second opinion) next week, and hoping that this will show what type of tumour I have, and how aggressive it is.

After which I am told that treatment will start re my Chronic lymphocytic leukaemia (CLL).

I have to say, that given all the recent ailments I have had, I am finding the ‘Bells Palsy’ the worst to deal with. I have been told it’s permanent, and I am having a small operation on my eye and mouth, to alleviate things somewhat.(If anyone has experienced ‘Bells Palsy’ or the described operation, I would be interested in their views.

All in all it has been a pretty traumatic and challenging year, but no different from what many of my Chronic lymphocytic leukaemia (CLL) colleagues have, or are going through I suspect.

Thanks again Lauran. All the best Ron.

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Hi All, I have at last had the ok to go ahead with my Chronic lymphocytic leukaemia (CLL) treatment. It had been put on hold untilmy neck tumour problem was resolved.

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Hi All, I hope you are all managing some kind of good quality of life, and I wish you all an early 'Merry Xmas, and Hogmany.

At last, I have the go ahead for Chronic lymphocytic leukaemia (CLL) treatment to proceed. which had been put on hold by my ENT man pending the results of my tumour biopsy.

After three questionable biopsies, my tumour problem is unresolved. It is apparently too problematic, at the moment, as they were unable to identify it, or treat it.

So, I am on W&W and will be monitored for three months, when another MRI scan will be carried out.

My Haematologist is organising a ‘Bone Marrow’ Biopsy. A recent body cat scan shows all my Nodes growing and needing seeing to. She did say that there is a particularly large node near my Kidney. It is dormant at the moment, but she is keen to treat me in January, and before my tumour MRI scan.

She is leaning towards Veneloclax pills, and a Obintuzumab drip, five week cycle. (I may have misspelled)

Has anyone experience of being treated with these drugs, or have any knowledge on their side effects, etc.

Any info would be well received. Thanks Ron

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