NHS vs private

[Jvbw]

hi there, I am recently diagnosed with a large AN and am wondering if the waiting times on the NHS are long for treatment? Is Cyberknife frequently offered in the NHS? I dint have private medical insurance. Would welcome any insights. Thanks!

[whitefishbay]

I don’t know much but yes NHS uses cyber knife.

[Jvbw in reply to whitefishbay]

Good to hear!

[Bizzyhazel]

Hi jvbw Sorry you’ve got an AN

What kind of size has it got to ?

Hope your managing the pain ok ?

Just two more sleeps for me then I’m having surgery on mine at Salford .

They are a very friendly and helpful team .

I’ve had a 3 year wait but of course Covid has cocked things up .

[DizzyDolly66 in reply to Bizzyhazel]

Good luck. Hope it all goes well and you have a quick recovery. I’m waiting to hear from Salford Royal as the Oral & Maxillofacial Consultant at NMGH wrote to them on 25th June. I’ll not expect to hear from them for a while.

[Jvbw in reply to DizzyDolly66]

It’s the waiting that’s so annoying isn’t it! Am wondering at what point they decide it’s important and doesn’t involve a long wait. Any ideas?

[DizzyDolly66 in reply to Jvbw]

No but I did think that if I haven’t heard anything by 25th August I’ll call the consultant’s secretary to see if they can give me some idea of timescale.

[Jvbw in reply to DizzyDolly66]

You are more patient than me

[GGourmet in reply to DizzyDolly66]

How did it go? Did you need to contact the consultant?

[DizzyDolly66 in reply to GGourmet]

Yes, I rang up the contact for the skull base team. Just as well as it turned out they had had the referral letter but not done anything about it so I was just sitting there on their system. Very apologetic and rushed through my MRI for Mon 12th September. They have said it could be an AN or meningioma at this stage. In the meantime, I’ve contacted the Oral/Maxillofacial Surgeon who referred me and found out that it showed up as 2.1 x 1.8 x 1.5cm on the CT. Feel much better knowing that.

[Jvbw in reply to Bizzyhazel]

Thank you for your reply. It is 25.29x28mm. Three years is a very long time. I could seriously not wait that long 🙄 no pain just dizzy / vertigo/ strange hearing / hard to work and concentrate. Best of luck with your surgery.

[Blappers]

Hi, I was told by the surgeons that a gamma knife surgery is not particularly useful for a large tumour. Before I had my surgery, the doctors said that one of the aim is to make it small (think less than 2cm) so that a gamma knife surgery can be done in the future in case of regrowth.

What is the size of your tumour? What are your symptoms? They might prepone it depending on the urgency of your case.

[Jvbw in reply to Blappers]

Thank you for your reply. It is 25.29x28mm. Does that fall into big? Due to holidays have not yet spoken to any consultant about it. So the web is really my only source of info so far. Was your surgery successful? Did the symptoms go away?

[Blappers in reply to Jvbw]

Hi, I think it is not small enough for a gamma knife surgery. I had a 38mm * 35mm tumour which was even bigger at the time of surgery. As I have read in this forum that lots of people had some symptoms after surgery which got better in time, so that's good. I think hearing loss is the only thing that didn't get better for most. Some adjust to it, some takes the help of a hearing aid. It all depends on how much it affects you.

Apart from the size, the position of the tumour also plays an important part in the symptoms you have. Another factor is the amount of damage, if any, that your nerve has during the surgery.

Good thing is that it's been diagnosed. I wish you all the best with your treatment ahead.

[GGourmet in reply to Blappers]

I hope this helps. Larger tumours require more radiation. The beam width gets larger as there are around 200 beams of radiation focussed on the tumour. The inherent danger from overlap with surrounding brain tissue increases with a larger tumour.

The typical limit is up to 35mm is okay for GammaKnife. Larger than this is physical surgery.

Ordinarily you will only ever receive once course of GammaKnife treatment. Physical intervention afterwards is not desired as the radiation often causes adhesions between the tumour and surrounding tissue. That is a risk for nerves and brain matter. This is another reason for physical intervention for larger tumours as they are less likely to respond well to radiation and physical intervention becomes more necessary.

I hope that’s a help.

[Jvbw]

Thank you, just one more question - did it take long for them to operate between diagnosis and treatment?

[flappers]

Hi, it may be that your AN is on the cusp of being too large for cyber knife in which case, if it is still an option, I would say it’s likely to be done fairly quickly. On my last scan in Feb it showed growth and in April I was given option of cyber knife at Guys hospital or surgery at Kings. I was told there is quite a wait but was actually treated with 3 fractions of cyberknife/linac radiosurgery in June over a five day period. If I had opted for surgery the wait would have been a very long time, as people with more symptoms and larger ANs would be given priority. Mine was 2.5. I asked if it would be quicker privately when I was told it could be a 6 month wait for radiotherapy, and was told to save my money. As it was, it was less than 6 weeks anyway. Good luck, I hope you do have the option of less invasive treatment.

[Jvbw in reply to flappers]

Thank you so much for your answer. Do you still have problems with balance / hearing?

[flappers in reply to Jvbw]

Hi, my balance is fine, as it was before treatment, ( I tend to be a little wobbly when I’m extra tired but not so you’d notice really, I think years of yoga and Pilates have helped) My screaming tinnitus and hearing loss is the same as before… my understanding is that radiosurgery aims to stop growth so any initial symptoms won’t tend to disappear.

[Jvbw in reply to flappers]

Thank you. that information helps

[flappers]

PS I have seen people having Gamma or Cyber on tumours around 3cm plus, successfully. It is as much about the position as the size. Join BANA ( British Acoustic Neuroma Association), check out their excellent support group via Facebook, and contact the Brains Trust.. they have some great resources, an online virtual support group monthly for those with AN and one to one coaching to help make decision about treatment options.

[Gardener21]

Hi, sorry to hear you’re on ‘the club’. I had surgery just over a year ago. As it happened, although my AN wasn’t classed as big, it was deemed too awkward to have cyber knife due to its position. I gather that they swell after cyber knife before they shrink which would thus have made my symptoms worse. I guess I got lucky with my surgeons, I had two. From initial telephone conversation to theatre day was 4 weeks. The surgeons both had the day free so I said yes. Recovery has been erratic, I’m mostly ok, deaf of course on the tumour side, tiredness is the biggest downfall. I hope you get your surgery/gamma knife soon, persevere, keep your name in front of them.. good luck xBx

[Steve_04]

Hi there.

Depending on location and symptoms, you should have options from radiotherapy treatment.

Which hospital are you under ?

Salford and Cambridge are the best two in the U.K.

If the waiting time are not sufficient for you, then you can ask for your hospital to reach out to nhs U.K. to find somewhere that can accommodate you sooner.

Private wise could be costly. For mine translab approach the surgeons wanted £500 an hour each with an estimated 12-14 hours. My medical insurance rejected there request and said they’d cover £300 per hour. Surgeons said they’d accept it but due to covid the hospital wouldn’t accept private treatment due to the situation with the ICU.

Hope this helps.

[Frizby]

Large AN unlikely to be suitable for Cyberknife. I had surgery 3 weeks following diagnosis under NHS for large AN last year.

[Jvbw in reply to Frizby]

That’s reassuringly quick I hope you are doing well now.

[Jvbw]

Thanks for the info - I have appts scheduled for initial conversations - one at Salford and one at the National Hospital for Neurology and Neurosurgery in London. So two opinions and then I take it from there. I don’t have medical insurance…so really want to have it done on the NHS

[Frizby in reply to Jvbw]

I’m doing OK thanks. I had my op at the National Hospital for neurology and neurosurgery. Hope everything goes smoothly

[Hlondon87 in reply to Frizby]

Hi. If you don't mind me asking did your gp refer you to this hospital. My gp has referred me to royal london hospital but wanted to be referred to either kings college or National Hospital for neurology and neurosurgery.

[Jvbw in reply to Hlondon87]

I am paying privately for the 2 consults and will ask my GP to refer me thereafter. I was informed that I can choose where I want to be referred to.