Brain tumour update

Health Care & Carte Vitale
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Hi All,

Sorry (as always! :face_with_peeking_eye:) for the long radio silence. It’s been a crazy few months…

Exactly a year now since we found out my husband, Sam, has brain and thyroid tumours.

Frustratingly, we don’t seem to have moved on much on the medical side of things.

Despite being granted ALD for diabetes and >80% disability by the MDPH, the doctors are all saying that it is NOT the tumours causing his huge range of neurological symptoms. Including a neurosurgeon at Kremlin Bicetre in Paris.

Hence, we are in the strange position whereby he is still on month to month arrêt de travail and can’t be put onto invalidity status, as it is considered that he does not have a diagnosis.

However, he tested negative for any other diseases (autoimmune, FGF14, Lyme, MS etc.)

We cannot invoke his ITT insurance to pay part of the mortgage because disability in itself has no equivalency for the bank and mortgage insurance.

Even the CPAM social assistant is at a loss and says he can’t/ shouldn’t stay on regular sick leave indefinitely.

At least, we finally started to get regular benefits payments as of the end of August, after waiting since last November. However it only covers 1h per day of help and I am having to pay for an additional 1-3h on top of that myself.

I’ve been signed off sick for exhaustion and chronic back pain since early June, so we’ve spent the whole summer at home (not fun for Lulu) and now I’m having to move onto prevoyance - another administrative and financial headache !

There’s no choice but to be at home and look after Sam and Lulu as best I can. It’s a strange existence, the world seems to have reduced down to the school run, doctors appointments, the weekly trip to Leclerc and an occasional escape to a Brocante for “therapy” when I feel like I’m really going insane.

French friends keep saying we should take Sam to the UK for diagnosis but after 15 years in France and given what I’m hearing of the state of things there, I’m not convinced there would be any benefit.

The logistics would be a nightmare anyway, since he can’t walk without aid or a wheelchair and has very poor vision. We can’t stay for long whilst Lulu has school and I have to keep our other businesses ticking over to pay for care and bills.

So, we’re toddling along, day to day, with no treatment or plan, only Doliprane for his pain and absolutely no idea what to do next…

He’s only 50, but losing hope :pensive_face:. Me too, if I’m honest.

Anyway, there it is (definitely not one for the cheerful news thread :sweat_smile:)

Useful suggestions welcome, as always :folded_hands:

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So sorry to hear about your husband’s illness and the knock-on effect it’s having on you and your family, and also it being compounded by the idiocy of insurance companies.

I don’t have any practical advice to offer unfortunately.

As for coming to the UK, I’m sure you would get good medical care but the difficulty is getting appointments with specialists, unless the situation is immediately life-threatening. Waiting lists are coming down but are still long. I think you’d need the help of a GP who is willing to push, and I don;t know how you would go about registering with one if you are still officially French resident.

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I am so sorry to learn of your frightening predicament. I’m not sure where you live but might you contact this clinic

Apart from seeing a specialist, they conduct regular clinical trials, one of which your husband may choose to join.

I wish you happier days ahead.

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I agree with Chris that it’s difficult to see how you would access an NHS specialist without becoming resident in the UK.

You’re clearly very embedded in France and the French system so probably best to stick it out there.
Could you ask your GP to refer you to another specialist for a second opinion? Preferably to a teaching hospital where there would be some interest in getting to the bottom of your husband’s condition.

Are the tumours benign? Although even if they are, I don’t understand why your husband isn’t being treated with something more than Doliprane.

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Thanks so much, Sam has a subependymoma, which is a rarer version of an ependymoma, usually benign.

Paris is within reach as we live on the borders of the Oise (60).

That clinic is not far from where he was seen by the neurosurgeon at Kremlin Bicetre and it was a doable 4h round trip in an ambulance.

Will look into it !

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Thank you, Chris.

Yes, these were my thoughts. We’d have to be based at Sam’s parents on the south coast as we have nowhere else to go. The NHS service is dire where they are, they barely can get appointments for critical heart conditions or a routine reponse from their GP…

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He’s been placed with CHU Rouen, but they haven’t exactly lived up to the reputation we were led to expect.

He spent 5 days hospitalised there and they ran a battery of tests but everything came up negative.

Once that had been done, they just shrugged their shoulders and admitted defeat.

Told him to consult a psychiatrist to deal with the depressing effects of his symptoms and try to live with it.

The tumours are apparently benign, the one in the brain very slow growing (considered stable), the one on the thyroid growing quicker.

He has a table of symptoms that could correspond to a dozen different conditions including ME and fibromyalgia but other than saying “it’s not the tumours” (which are the only things they have found), showing no interest in exploring further….

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Danielle sorry to hear this news, my SIL has recently undergone brain surgery to remove a benign tumour and the operation was carried out by a professor in Tours. My SIL naturally asked that she should seek a 2nd opinion back in the UK, the Professor replied it’s a good idea, and the NHS will refer you back to me as I am the leading professor of this type of surgery. I don’t know if that is of any use news or location wise but if it is I can ask for the surgeon ‘s name and details?

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Danielle, I wouldn’t normally have added my pennies worth, but you mentioning ME and fibromyalgia made me think. An old friend of ours developed really nasty symptoms, ended up unable to walk or stand up, was in constant crippling pain. He was hospitalised and a battery of tests done, with no conclusion, morphine helped but he was on so higher a dose, well it wasn’t great. In desperation a doctor decided to check for a rare condition, Hughes Syndrome, it’s not what they find in the blood it’s what they don’t. It’s probably not of help to you but maybe if you have a moment you could look it up, to see if it’s a possibility? As far as I know it’s similar to Lupus, more common in women. Our friend that has it was very lucky as the guy that suggested they look for it was the one that first discovered it. Truly hope your husband gets an answer soon, it must be hell for you all.

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Danielle, I suppose you’ve done your own research about Sam’s symptoms? I ask because a friend of mine’s OH was very ill in hospital with a brain condition and the diagnosis led to treatment that didn’t work. Being a bright lady and daughter of a doctor and a nurse, she want online and found a different, rarer, condition that had the same symptoms.

They waited until the end of the consultant’s clinic and managed to speak to him. She presented her arguments evidence she found online and the consultant luckily agreed to look again. The result was that they changed the treatment and after a few weeks of convalescence, he was restored to normal.

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I am so sorry that you are mired in this appalling state of affairs.

From personal experience I totally understand how depressing it is when you can’t either get a diagnosis or treatment.

I go to Lyon now where there is a team specialising in rare cancers and my specialist is kind and understanding and she actually listens to me.

Lyon is also undertaking research into endometriosis , of which I had a severe case, but my GP in UK was going to send he to a psychiatrist?

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That is just shocking :open_mouth:

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Best wishes for a better outcome than you presently expect - this sounds a horrible situation.

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My french friend was treated at GR before she died, unfortunately the melanoma metastasised too far and she didn’t stand a chance as she ignored it initially, but they really are the best in the country for cancer treatments and diagnosis.

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Talking of the NHS, I have had family over for the week and they are now so disgusted with the system, they try and treat everything themselves. They can never get appointments which are only online, no saturday surgery which is a pain for working people, the doctors themselves allocate only ten mins per person so they never get time to ask much and the overall morale of both medics and patients is at an all time low. This is a small town with a four doctor surgery and another sister surgery three miles away. Oh every time they try and ring, the receptionist tells them to go to the hospital which is 11 miles away.

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Hi Debby, thanks for the meassage. I’ve just looked it up and it could fit : blood clots in the brain, leading to problems with balance, mobility, vision, speech and memory - he has all of those, in addition to the generalised head and body pain.

Will try to get a call with the neurologist to see if they can investigate (if they haven’t already ruled it out). Whenever I ask for a list of the conditions they have tested for, the response is “all of them”, he has nothing we can identify.

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Hi Jennifer, yes I have been basically driving and pushing the doctors all the way, since we got fed up of his MT sending him away with Doliprane for 5 years.

The trouble is he has so many symptoms, whenever I look things up, he could have one or more conditions combined, we’re just not sure. The doctors, faced with the list, just throw their hands up and say “that’s too much, I can’t deal with all that”. They pick 2 or 3 at random and give him symptomatic medications which don’t work, and then say “oh well, we tried”.

For example, when he was diagnosed with the subependymoma brain tumour and we saw the list of symptoms, we had a lightbulb moment - finally ! He has all the list. But still, they say the size and location of the tumour he has can’t explain the symptoms.

It doesn’t help that he also has sleep apnea and borderline diabetes.

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Thank Jane, I tried to get Sam into the clinic at Lyon for FND (Functional Neurological Disorder) but he was refused.

They said he has to be diagnosed by a neurologist elsewhere first and then all they do is reorient the patients for multi-specialist care close to where they live (in theory).

Without a diagnosis, they won’t take him

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Danielle, our friend has had diabetes since he was very young, so that did complicate diagnosis at first. Maybe getting them to investigate down a different and unusual route just might help them find Sam’s problem. Good luck and try to not loose hope.

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That’s a lot to have to cope with Daneille. I’m afraid I’m no advice to offer on the neurological front, but based on tackling one problem at a time, have you considered a thyroidectomy?

I was diagnosed with a lump on my thyroid some years ago, presumed benign, but my endocrinologist advised having it out anyway, to prevent any future risk. Which I did and to which there is no downside. It would remove, literally, one source on concern.