Treatment options in/from London

[marka]

Hi all,

I have just been diagnosed with a 19mm AN on the right hand side. I am over the initial shock and have been researching my options for the last few days. There is much more research to be done, but I am currently considering radio surgery/therapry options, such as GK, CK and FSR. I still have most of my hearing on the affected side and would like to save as much as possible.

I have the following UK specific questions (I have joined BANA, but their site does not seem very active).

a) I would like to hear from others who have been for a GK at Cromwell Hospital. I have BUPA medical insurance through my employer and if I were to choose a GK procedure it would likely to be there as BUPA would cover the fees. I understand that the GK deparment at Cromwell is headed up by Mr. Christer Lindquist who is should be very experienced. I have not seen the statistics from their GK, nor have I been for a consultation yet (I am seeing the ENT again on the 20th and will get the referal then. When I saw him last week and learned of my AN I did not know what AN was so could not make a decision of any sort. The ENT offered GK and Microsurgical referals to Cromwell as a first step and for me to investigate other options outside the UK).

b) I would be very keen to hear from those who choose treatment in the USA (FSR, Cyberknife etc).  If you had UK private medical insurance (such as BUPA) did they pay for it? My ENT thought it was unlikely and I think its unlikely as well, but I would to hear the experience of others. It should be in BUPAs interest to at least to at least partially cover a procedure that tends to produce less side effects as they would have to pay for treatment of side effects afterwards.

c) Again for the USA based options how did the follow ups work?. From my limited understranding so far I would need MRIs twice a year for the first few years and then less often. Furthermore, it is possible I might need a temporary course of steroids (I realise the side effects and in the end I would think very hard about it if there was a need, but I would need a quick consult and prescription if it came to that). Also there are the minor chances of more serious things such as hydrocephlis(sp?) which does mean that I would need someone local to keep an eye on me. For those who went to the USA for radio treatrment were the follow-ups done via the ENT that originally diagnosed it? Did a UK based radiosurgery centre (cromwell, shefield, etc) do the followups? The ENT who diagnosed it has a couple of other AN patients (I was in shock so didn't ask how many), but as far as I know none of them went abroad for treatment. He tends to refer private patients to the Cromwell Hospital in West London for both microsurgery & Gamma Knife. He did mention the FSR, but did not know much about it.

d) again for the USA based options. how much does a CK or an FSR treatment cost? I realise this is a sensitive topic, but I need to know at least some approximations, i.e is it something around $40k-60k or it closer to $100k or more? I will obviously find out when I start to contact US based centres, but for now at least a rough approximation would be very useful.

e) a purely silly question. Why are there no CK facitities in the UK? There seem to be 7-8 on the Continent...


I will cross post this to the canadian site as well as I know some UK based people frequent there.

Thanks for everyone's help!

Cheers,

Mark

[tony]

Good Day (from reading - berks)
I met Lindquist about 2 yrs ago - I thought he was top-notch
He does surgery as well as gamma - so there is no "axe" to grind here
he does give a balanced view.
Cromwell is private - but it does do gamma for the NHS as well on referal
You might consider also Sheffield Gamma (Royal Hallamshire) - they are a teaching
hospital and have 10yrs exp of gamma/tumour work (3,000 patients ?)
by NHS standards - a very good hospital
Some of their results are published on the net by british medical journals
Best Regards
and good luck
Tony

[Derek]

Hi there Marka and Tony...

I am also from the UK (north east of England) and have just joined this excellent website which I find more informative than the home based BANA site.

I was diagnosed with a 2.5 x 1cm AN on my right side in March 2002 and have been subject of the 'wait and see' procedure. My most recent MRI scan in April of this year indicated the first sign of enlargement and is now 2.5 x 1.3cm an increase of 3mm since March 2004 which I believe is about the average rate of growth.

My consultation with Prof David Mendelow at Newcastle General Hospital yesterday revealed that the AN is touching the brainstem but not impacting it and a decision was agreed to continue 'wait and see' until my next scan in April 2007.

I am not keen on microsurgery and have also commenced in-depth research into alternative treatments. I have been advised that if the current rate of growth remains constant I will have about 2 years before my ultimate decision is made re microsurgery or some form of stereotactic radiosurgery.

I currently have a preference for Cyberknife treatment (unless someone presents me with valid reasons why I should not) and  I too was dismayed to learn that it does not seem to be available yet withn the UK? I read your post with great interest Marka re costing of Cyberknife treatment abroad. My first choice would be at Stanford CA and I believe this treatment is also available at Munich and Rotterdam.

However the financial aspect is a major consideration  (particularly Stanford) and I am not sure whether my medical insurers would be willing to contribute fully or in part. Interestingly, my neurosurgeon was in praise of the Cyberknife treatment undertaken at Stanford!

I wondered Marka, if you are already making relevant enquiries with Cyberknife treatment providers, whether you could keep me aware of any progress you make to minimise unneccessary duplication. If you would prefer to correspond personally my e-male address is derekstorey9955@aol.com

Regards

Derek

[Mark]

Derek and Marka,

I had my 2 cm AN treated at Stanford, so I can certainly vouch for the quality of the CK treatment there. I have no knowledge of the UK insurance coverage so I don't have much to offer there. I know when I was treated there in 2001 there were patients from Singapore  and Europe being treated at the same time so they and other US medical centers with CK probably have experience with reimbursement from other country's insurance programs. I would suggest visting the Cyberknife patient support group web site where there is a physcian message board where you could post some of your questions. It is at www.cyberknifesupport.org  . As I remember the bills I saw from my treatment ,the "full" cost of a 3 day CK treatment is around $50-70K which fortunately my insurance covered.

Why are there no CK's in the UK is probably a reflection of the drawbacks of a nationalized healthcare system. GK may be an older technology but it is still an effective tool for treating AN's so there is no motivation to bring in a newer technology like CK. I susepct it will become available in the UK as it is in other parts of Europe and Asia once the docs there understand it's potential to treat tumors outside the skull which GK can't do. That capability will in all probabilty be the impetus that justifies purchasing it.

Stanford would certainly be a long way for you to travel and there are many other excellent centers with a CK in the US, however if that ends up being where you would want to be treated, let me know and I'd be happy to get you the direct contact information for both Dr. Steven Chang and John Adler there.

Mark

[tony]

If it puts our health system into context :
- we have 3 or 5 Gamma knife units in the UK - for a population of 60 million
- one per 12 million
- USA has 200 (ish) Gamma units - for a population of 260 million (?)
- one per 1.3 million
or roughly 10 ten times as many  per head of population, relative to the UK.
Our NHS is now the 4th largest employer in the world (1.5m souls).
The UK is an area no bigger than many USA states
- yet we have 60 plus "regional " health authorities (US translation here : Admin Empires)
60 boards of directors, MDs, FDs, etc, etc, etc,
It makes Enron look like a properly formed and constituted company....
best regards
tony

[Derek]

Hi there Mark...

Thanks for your response. Your kind offer to supply contact info re Dr Chang and Dr Adler is greatly appreciated and I will certainly get in touch with you should I ultimately decide on treatment at Stanford.

I would be most interested to know of any side effects that you may have experienced post treatment both short term and long term and any positive or negative aspects associated with your Cyberknife treatment.

Regards

Derek

[Sue]

d) again for the USA based options. how much does a CK or an FSR treatment cost? I realise this is a sensitive topic, but I need to know at least some approximations, i.e is it something around $40k-60k or it closer to $100k or more? I will obviously find out when I start to contact US based centres, but for now at least a rough approximation would be very useful.
I know you are asking aboout CK, but my Gamma Knife procedure, meds, facility, doctor, MRI - my whole 5 hours at the facility cost $66,377.80.  My husband's insurance paid for most of that, Thank God!!

[Mark]

Derek,

I have my story posted on the cyberknife patient support group web site under "Mark's Acoustic Neuroma" which gives a pretty good recap of both my decision journey and subsequent results and side effects in the nearly 5 years since my treatment. Short version is I had some mild vertigo reactions over the first 6-8 weeks post treatment which were not overly disruptive and certainly were temporary.

Mark

[Derek]

Hi Mark...

Have accessed the relevant info re your story on the Cyberknife patient support site which was most informative and extremely useful to me. Thanks.

Regards

Derek