Cost of getting Botox injections if we go private.

[Ellie]

I posted this on your other thread, I'll post it here too in case you don't see it.

Hi Andrea, good to hear from you!

Am hoping your swallowing side effect issue might wear off? I love my daily cup of coffee, so I can only imagine you're gagging for your cuppa

IDK if you still have the NG tube? Lots of water helps thin the mucus, along with the carbo & pineapple juice.

Some find that taking an OTC Chesty Cough syrup containing Guaifenesin, also helpful or a saline nebuliser.

Often it's a case of trying a few different combinations to see what suits you best.

If the mucus is not manageable, I'd recommend getting a Suction Machine - does what it says on the tin - which can be supplied by your team and is very good. If the mucus can first be thinned, it makes the suctioning less agressive.

Good luck!

Love Ellie.

[Terry]

Hi Rumba and good to hear from you;

Glad that you've got the injections and that they work.

I'm not really the person to answer the question about mucus so I hope others give you valuable advise.

Love Terry

Finally got my botox on 1st August, saliva has almost disappeared but I have sticky thick mucus in my throat. I am taking carbocystene and pineapple juice to thin it hoping it will reduce shortly anyone have any tips I am dying for a decent cup of tea but the increased swallowing problem which the doctor mentioned before administering the botox is causing problems with drinking aswell I have have small amounts of fluids for taste

Many thanks to MND connect for getting things moving and the staff at Addenbrookes MND centre

Hi Jay
My husband's just come out of hospital after nearly 3 weeks on the Respiratory High Dependence Unit.
He now has a NIV, they stopped the patches and changed to Glyco...sorry can't remember proper name, which at the moment is being administered through a syringe driver.
Two days before he came out he was offerred Botox injections which he agreeed to.
He had 8 injections, 4 down each side of his face starting just under each ear.
The Dr said it will take about 5 days to work, if it works, no guarantee. If it does work it will need repeating after 3 months.
At the moment he is in the local hospice while we sort meds out and work out support needed.
I hope you get sorted without having to pay.
Best wishes

Kernowmum

[Ellie]

I had Botox few weeks ago for ten days. It was put through my peg.

John, whatever you took through your feeding tube for 10 days, it certainly was not Botox. You would not be here to tell the tale if you ingested that much Botox ..

Meds that reduce saliva production, such as the Atropine and Hyoscine which you took, don't thin secretions, so I hope whatever new med that you're now taking instead of the Carbocisteine, works well for you.

It's a balancing act to get the best meds to act on reducing saliva and different meds to thin mucus, especially as it's our saliva which helps thin our mucus in the first place!!!

Good luck.

Love Ellie.

[Terry]

Hi John;

It is good if you can get a clear throat/mouth over night by sucking a Bisodol tablet.

I did not think that they would put Botox through your peg. I thought it was injected into or around the salver glands but I'm no expert.

Love Terry

[JAY TEE]

Jay, I had Botox few weeks ago for ten days. It was put through my peg. The only thing it did to me was give me terrible constipation. I take Carbocisteine 5ml three times a day and eye drops under tongue that not working well either. I have patch on behind ear as well. I still have thick saliva., I have sucker and breath easy machine and they work well. I saw the consultant two days ago and he suggests another bit to replace Carbocisteine. I did tell him once in bed I suck a Bisodol tablet and I find this keeps my mouth clear overnight. He didn’t tell me not to do it.
Best wishes John

[Terry]

Hi Jaxx;

I guess she's tried kwells?

Love Terry

[Jaxx]

Hi,
My daughter tried the motion sickness patches prescribed by the GP they worked really well but irritated her skin so she had to stop them, hadn’t realised Botox was an option.

[Ellie]

Fingers & toes crossed for the Atropine!

It's just a few drops under the tongue, so not as involved as tablet meds.

I meant that MND Connect may be able to help directly or indirectly with Addenbrooke's to speed up things, rather than part fund private treatment - sorry, I wasn't more clear.

Love Ellie.

Thanks Ellie.

Yes, the grant was initiated through the MND clinic. Somewhere on the line a clerk may be sitting on it. We have already tried Propnthelenr bromide, glycopyrronium bromide, Amitriptyline without much effect. Just now our GP phoned me out of blue and said she had been advised to prescribe atropine for Andrea. Going to try that too. But all these needs giving multiple times each day. I do not know how this compare with Botox injections that lasts for 3 months or more when it comes to the quality of life it offers. Medicines are fine for the days she stay at home. But if she wants to get out of home I do not think anything comes anywhere near Botox.

I contacted the MND connect. But with my past my experience they are unlikely to do or fund anything that is not approved by the hospital MND clinic.

[Ellie]

Jay, I am so sorry for you and Andrea.

Botox treatment, to dry up saliva production, has been given to numerous forum member and always through the NHS, without this funding nonsense.

It's usually given 'as a matter of course' when medications have been tried but failed to control the saliva, or had adverse side effects.

It's quite horrendous that Andrea has to wait for a 'grant' through her hospital, given the hugely negative effect on her (& by default, on your) quality of life. I presume the Botox request was initiated by the MND Clinic?

If MND Connect can't help and you go private, choose the Doctor carefully. Make sure they've experience of injecting into the salivary glands.

I should add that Botox won't help with the thick mucus secretions, for which there are meds and/or a Cough Assist machine. She should also be well hydrated with water and some people find pineapple or papaya juice good too, in addition to the water (1500mls min per day)

Give my love to Andrea.

Good luck,
Ellie x

Thanks Terry. Very much appreciate it. But we'll wait. The silly thing is the injections are affordable. It is having to get it done in private in a private hospital that pushes the cost to thousands. But I am determined to get at least a trial injections done to check the efficacy. As much as all involved in her case , I too have a duty of care. Unlike the other professionals who meet her for half an hour session once every few months, I am the one having to watch the appalling suffering and distress day in and out . It makes me stressed too, being unable to do anything or have no information about what is happening and how long to wait. So I have a duty of care for my own well being and health too and got to do something about the cause.

I had been in touch with MND connect and waiting for a phone call back since there was a call screening, I could leave only my number name and a short explanation and a request for a return call from the area contact.

Hi Jay,

I thought that it was almost a a matter of course that you got offered or you asked and if suitable you got.

Please email Mnda Connect with this.

I am descusted with it and Rumba's doctors.

Don't know anything about croud funding but I would be grateful if I could contribute a bit if you have a PayPal account.

Botox does not always help but it seems to in most cases.

[Terry]

Hi Jay,

I thought that it was almost a a matter of course that you got offered or you asked and if suitable you got.

Please email Mnda Connect with this.

I am descusted with it and Rumba's doctors.

Don't know anything about croud funding but I would be grateful if I could contribute a bit if you have a PayPal account.

Botox does not always help but it seems to in most cases.

[Jay]

After watching for more than 6 months my partner suffering with continuous excess salivation and the thick mucus blocking the air way leading to breathing difficulties and chocking, And, waiting for nearly six months the NHS grant applied by the Addenbrooke's MND clinic to come through, I have decided to start a crowdfunding for getting botox injection privately at least for one session until one day the grant money arrives.

Can somebody advice me how much I should aim to raise to get first round of Botox injections and consultation?

I have tried to talk to relevant people from the NHS including Addenbrookes information desk, but nobody even seems to know where I should go to get this information. We have offered to buy the injections (apparently £200-300) until the grant money come through, to get this done at the hospital, but that came to nothing either. WHAT WE DO NOT HAVE IS THE TIME! Both lower and upper motor neurons are affected by the MND she has and advanced bulbar palsy too. We waited for the summer in order to go out since this may be last year she can do that even on the wheelchair, and told the NHS people involved in her case. But nothing has happened other than prescribing some medicine which do not seem to work and waiting for the grant money to come. We cannot even go to a film since we frequently have to use the suction pump that sounds like a scooter. So far, summer has been spent in front of the TV, confined to the living room. She does not even wants to go around the neighborhood on the wheelchair because of the miserable salivation which needs roughly each 3 minutes suctions in the mornings.

When it come to terminal illness, the NHS doctrine is to maintain the quality of life. I wonder why it is not applicable here. I feel like I have to go in a fully loaded armed car to persuade our GP to make a home visit. It has been two years since my partner had been diagnosed. We had 2 home visits by the GP. Always a telephone consultation is sufficient to do the job whatever it is. It is one and a half months ago I booked a face to face consultation to discuss the situation with the Botox injections with our GP, but it won't happen until 28th of this month!

If once given, Botox stops salivation for 3-5 months (as we have found out from whom had the treatment) why not the MNDA approach the Health ministry and the NHS to get this treatment available for the MND patients without the consultant having to send a grant application for one and each MND patient and then having to wait an indefinite, unknown length of time?