newly diagnosed with 2 AN

[Lou]

Okay so this is the best site I have found, not much out there. I have had serious ear problems for the last 10 years and have had tubes every year, they finally decided to do a CT and found two 'findings' MRI confirmed 2 tumours 1 at 4mm and 1 at 6mm. All I have been told is ''no big deal, don't worry about it''. The problem as I see it is that I am living in the UK and as it is a national health service ( free) they won't do anything. In itself this is fine but is this the best option??? I have facial twinges, not all of the time and sometimes I get dizzy, but my main problem was and is the problem, my ear drums don't work ... Can anyone advise me. I have absolutely no clue as no one is telling me anything.........

[Jim Scott]

Hi, loubee - and welcome ~

Your predicament is a new one for me.  The fact that you're dependent on the government health care system is definitely problematic. Those tumors are very small and apparently the doctors did not specify whether they were acoustic neuromas - or something else.  If, based on your symptoms, they are ANs, there is a likelihood - but not a guarantee - that they'll eventually grow and cause you more problems.  The doctors probably feel that being so small, it is too soon to address the tumors and ANs are just about always benign.  However, that leaves you in a 'watch-and-wait' mode and suffering with the symptoms you've described.  Unfortunately, I have to venture a guess that the NHS will not authorize radiation (or surgery) for such small tumors, even though their eventual growth could have a very negative impact on your quality of life.  Being with few choices, I would suggest you plan to deal with the facial twinges and loss of equilibrium as best you can until such time as you can persuade your doctor(s) to authorize another MRI and if the ANs show growth, make it known that they are harming your ability to function properly and that you want to have them irradiated.  Again, you're at the mercy of the NHS but I do hope that, in the best scenario, the tumors will show no growth, your symptoms will abate and you can effectively ignore the tumors for some time.

Jim     

[Lou]

  well,what a joke the English NHS System is...... Just after posting I actually received a call from my consultant to say 'don't panic' how funny, why do they say that? It seems as though I now don't have 2 acoustic neuromas, I have 2 facial nerve neuromas one on the left side and one on the right side............... Even more confused....

[ppearl214]

Hi Loubee and welcome.

My husband is from the UK (he's been in the States now for only 4 yrs) and is very familiar with  NHS.  I just shared with him what you noted and (I quote him).... "there is no jumping the queues with the NHS" and "to try to do what you can to get in with someone familiar with facial neuromas as soon as you can schedule".

Now, I'm not sure where in the UK you are located.  My husband is from England and I do know of many facilities in London as well as surrounding areas.

There are many on this site that are from the UK.  There is a user... Derek... who frequents here and may be able to help provide insight with dealing with NHS and trying to get into specialists sooner than later.  I think he would be a terrific resource.

I can't tell you much re: facial neuromas (we have a few folks on this site that have them.... 1 in particular that has been in watch/wait for many many years.... yes, the "not to panic" mode).

Hang in there.....  be strong.
Phyl

[mk]

Welcome to the site and sorry about this diagnosis.

OK, take a big breath. I don't know anything about the NHS, but as Phyl noted there are quite a few people here who have received treatment in Britain. Also there is a support group, the BANA, which you may want to look for.

From the sounds of it, is seems that indeed you may have facial neuromas (although this is not always visible from the MRI), but your facial twitching suggests this. If this is the case, then your doctors are probably right that wait and watch is the best approach since your tumors are small, because surgery or radiation can damage severely the facial nerve. Radiation may not be favourable if you have NF2 (which is likely since you have two tumors). Generally doctors in Europe and Canada favor the conservative management (W&W) for small tumors.

Having said this, you should insist to get a referral for an experienced neurosurgeon, who will be able to monitor your condition and will be able to explain more. Most likely if your diagnosis was made by an ENT or general practitioner, they don't know much, that's why the lack of information. It may take a few months to get a referral, but then you will be able to get an expert opinion. It is annoying when doctors talk down to the patients, not explaining things - arm yourself with information from this site, and go asking questions. Once the doctors realize that you are informed (throw in the discussion a few medical terms too), they will immediately change attitude and talk to you differently.

Don't hesitate to ask as many questions as you want and feel free to vent.

Marianna

[Chances3]

Hi loubee 10

I am very sorry to hear about your tumors, and very sorry to hear about the NHS in the U.K.  I guess we are pretty lucky here in America.  The people who have posted have given you some excellent advice.  I wasn't going to offer any, but I decided to give some.  Not sure this will be of any help, but it's just a suggestion.  Can you reach out to your local political representative to see if they can recruit some help, so you can get to a specialists ?  Even escalate it to a higher level within the political system.  What I have learned from this site, Acoustic Neuromas eventually have to be dealt with, so try and be as proactive as you can with your health.  Reaching out to other AN patients in the U.K. is great advice as well.  I hope and pray you can get all your doctors lined up in a timely manner.

God Bless.

[Lou]

  thank you all for your advice. I think my biggest problem is coming from the states where you get what you need when you need it, it is extremely frustrating not having that level of control. I actually saw the specialist today ( I actually sat and insisted) I am now assured that I will get seen when ever I feel I need to see him.......... won't hold my breath but lets see.. Again thanks to you all, it helps just talking about it to others with similar problems

[Cheryl R]

Hello and have you checked into if there is a NF2 clinic that you can be referred to.    I am thinking there is as there have been a couple of people on here from the UK  with NF2 and mentioned it.     One was the father of a teenager who has it.     That has been a while and do not know what his outcome has been.        The treatment ideas can be a bit different for NF2 so that hearing can hopefully be spared in one ear.         I am NF2 with 3 tumors removed.      One was a facial neuroma and one does not know for sure if one is a facial one until surgery is done.   Some symptoms can say it is possibly.               Good luck with how it goes for you and keep us posted.
                                           Cheryl R

[Susan A]

There is actually an NHS document that describes best practice for treatment of patients with NF2. With 2 tumors, if I were you, I'd push really hard for a visit to an NF2 clinic.   See http://www.specialisedservices.nhs.uk/document/10331 for a downloadable PDF. Here are some of the relevant highlights:

"Consequent on patient feedback to specialist advisors from The Neurofibromatosis Association (NFA), Professor
Evans organised a consensus meeting in 2002 and subsequently published national guidelines for NF2
management (Evans et al 2005b). Despite these the recommendations for one stop multi-disciplinary clinics and
a national centre for radiosurgery, many NF2 patients continued to receive ad hoc fragmented care.
Furthermore consultants with expertise in sporadic vestibular schwannoma management often fail to recognise
the well documented difference in natural history and pathology between sporadic and NF2 related tumours.

Service Overview
The national NF2 service designates 4 centres to provide multidisciplinary clinics where patients can see a
number of specialists on the same day. These clinics, based in Cambridge, Guys and St Thomas’ [GSTT],
Manchester and Oxford, include at least one of each of the following: Neuro-otologist, Neurosurgeon,
Neuroradiologist, NF2 physician (geneticist/neurologist), audiologist, and specialist nurse/genetic counsellor with
input from ophthalmology, plastic surgery and pain clinics."

The document argues that all NF2 patients should be seen at one of the multidisciplinary clinics:

"In non-specialist centres the patients are often followed by 3 or more consultants in separate clinics. The
proposed model of coordinated care should lead to cost savings through: overall reduction in outpatient
attendances and nurse monitored screening for those who are pre-symptomatic or have very mild disease. In
wider societal context patients and their families will need to take less time off work/education as their care
moves to ‘one stop’ clinics."

They recommend that patients be seen at an NF2 clinic after initial diagnosis and annually from then on.

"The NF2 service will be responsible for oversight of all aspects of patient care for every NF2 patient in England."

"All patients with a confirmed diagnosis of NF2 using the criteria below will be referred to the service:
· Bilateral vestibular schwannomas
· 1st degree family relative with NF2 and unilateral vestibular schwannoma or any two* of: meningioma,
schwannoma, glioma,
· neurofibroma, posterior subcapsular lenticular opacities
· Unilateral vestibular schwannoma and any two of: meningioma, schwannoma, glioma, neurofibroma,
posterior subcapsular lenticular
· opacities
· Multiple meningiomas (two or more) and unilateral vestibular schwannoma or any two of: schwannoma,
glioma, neurofibroma, cataract
· *Any two or refers to two individual tumours or cataract."

[Lou]

  WOW, Susan thank you so much for this. I shall be doing some reading.
God love ya
xoxoxoxo

[Susan A]

You're welcome loubee! I was lucky that all my docs recognised immediately that they did not have the knowledge to deal with my case and I got to the NF2 clinic in Boston only two months after my initial diagnosis. It seemed pretty clear to me from reading the NHS document I linked to that too often in the UK patients have NOT been referred on to the NF2 clinics as often as they should be, so it's important (whether you have NF2 or not) to advocate for yourself. My understanding is that NF2 tumors need to be treated differently from non NF2 tumors, so it is important to get to see an expert.

(BTW, I spent the first half of my life living in the UK and all of my family still live there.)

[Keeping Up]

Hi Loubee

Sorry you are here visiting these boards.  Can't say I can offer much other than a bit of personal info re a small tumor and national healthcare system (Canada).

I am W&W for a small AN.  I could have had surgery or radiation (with a wait of course) but followed my wise doctors advice - no need to treat something  until you need to.  I don' known if the UK system is the same but certainly have never heard of any public system not treating because it is required.  The good thing about public systems you don't need to make a potentially life changing decision because of the fear of losing your insurance.

mK and others offered some great advice - get armed with accurate info (we all can quote research papers), get referrals to specialists - NF2 is certainly key because ANs in particular are treated differently in NF2 patients.  If facial neoromas are at all similar to ANs you should have time to do your research and wait for referrals with little to no risk to your long term health.

I am now 3 years post diagnosis and have my next MRI in 10 days - hoping for another boring no growth report.

Good luck but do your research.

Ann

[Lou]

  Thanks Ann, it is so difficult when there is so little information. I keep getting dizzy and am told to shake my head to recalibrate my equilibrium......... Has anyone else been told this. I get dizzy sometimes when I am not moving my head at all,so am not sure how shaking my head for 10 Min's is going to help.......

[Keeping Up]

Loubee10

Yes, it can make sense to shake your head to recalibrate (so to speak).  I don't suffer from any dizziness, or at least not for several months (I have pretty weak hearing and tinnitus but otherwise in perfect health as far as I know ... my MRI is a week today).

My boss and my sister (two different people) have had severe bouts with positional vertigo.  They are both about 42 years old.   Both received treatment - one in Boston and one here in Calgary - which were very similar.  My sister in the US got MRIs & CT Scans numerous times over - and nothing was visible so is now with the Dizzy Clinic in Boston.   To stop the spins, they were told to sit on a bed and heave themselves backwards and supposedly keep their eyes open at all times (very difficult I am told). Other exercise include lying on our back and looking as far to one side as possible then rotate your eyes & head very quickly the other way.  I was told this will hopefully get the inner ear crystals back in their proper place or better acclimate the brain/eye/sensory system to rapid changes.  Again, neither have any vestibular tumors but do suffer from very debilitating vertigo.

So, does it make sense yes - is it the best option for you, would have to leave that to your doctors.

Take care

Ann

[Lou]

Thanks, what a help this site is. I feel as though I have gained more information here than from my specialist, will give it a go. Good luck for next week
Mandy x