Support in the UK....where!! Advice needed......

[helpless_sister]

Hi there,

My sister had surgery to remove an acoustic Neuroma back in June this year.  She is recovering remarkably well although the nerves have not returned to her face so one side is in palsy 

The problem is we as her family are trying to support her but we just cannot understand and I feel she would get some comfort talking to people who have been through this operation and out the other side.  We are in the midlands, UK but Im struggling to find any groups and the health system whilst very good for the Op is abysmal for the aftercare!

My sister is getting more and more "down" and the Dr's wont prescribe anti depressants as they say the brain needs to settle naturally for 12 months.  I can totally understand this but how can we help her??  She has past history of anxiety / depression pre Op, and Im worried that the further she sinks the harder it will be to get out of this.

I cant imagine how she must feel.  Im vain!  I think most women would have a hard time with the face problem.  I just dont know how to start to help her.  This emotion might even be normal in the bodys recovery??  I just dont know.  I feel helpless and very worried for her.

Any advice gratefully received.

[Jim Scott]

Hi ~

I'm sorry to learn of your sister's looming depression following her AN surgery.  However, this situation is not that uncommon for AN post-op patients with facial mobility issues, both male and female.  I admire your ready admission that you and your family, while supportive, cannot really understand her state of mind and are seeking out a way to connect your sister with those who might be able to help her.  Frankly, on that basis, I'm glad you decided to register and post here.  We're a very supportive 'community' comprised of (mostly) AN patients planning possible treatment (surgery or radiation) or in recovery.  I'm a AN patient that underwent 'de-bulking' surgery to reduce a large (4.5 cm) tumor (to approximately 2.5 cm) and to sever it's blood supply.  I'm very fortunate to have come through the surgery with no post-op issues other than remaining deaf in the affected ear. My surgery was followed (3 months later) by radiation (FSR) to destroy the remaining tumor's DNA and effectively 'kill' it.  That went remarkably well and, via MRI scans, it appears as if the AN has, indeed, 'died'.  I'm now 5 years post-op and doing quite well.  There are many AN patients on these forums with similar stories to tell.  I would encourage your sister to 'visit' the ANA website, register and post.  She'll find a welcoming community of AN patients from all over, including the UK, who can relate to her travails and offer fact-based encouragement.

I would be remiss if I didn't offer a link to the British Acoustic Neuroma Association website: http://www.bana-uk.com/  I haven't used that site (for obvious reasons) but it looks good and perhaps your sister might be more inclined to discuss her problems on there, instead of the U.S. AN website forums.  That, of course, is her choice.  However, we stand ready to welcome her here, if she is so inclined.  Again, I respect your effort to help your sister when she needs more than you can offer her right now.  Well done.

Jim 

[mattsmum]

hi - i am in uk and found both this forum and the bana jim has referred to after my radiosurgery. i wish i had found them before as i would have been better prepared for what was to come.
can you encourage your sister to register here, and join bana (you do need to join  for a modest fee to use the forum there) as there are lots of people who can empathise and/or give their experience or advice. and there are local support groups in the uk - there is one in the west midlands and the details can be found through bana. and i think there is also a uk-wide service for people struggling to cope.
regarding her treatment for her mood difficulties - who is looking after those - is it her gp, or ent, or neurosurgeon? there is not really any reason to stop antidepressants being prescribed if they are needed - i hope she is having some psychological support?
there is help out there - do encourage her to tap into it.
vikki

[steph28]

Hi,
I don't know how much help I can be, but I am also from the UK. I live in Buckinghamshire, around J4 of the M40, if that's any help. I am nearly 2 years out of surgery and at the age of 28 was left with complete right side palsy of the facial nerve. Even now after 2 years my face does not work, but there is some movement. I first notice some life in my face about 8 months after surgery, so your sister has a way to go yet, but everyone is different with recovery. I can say I understand how your sisters feeling and I hope she's a bit more happier soon. I still have quite a lot of bad days, I am hoping when I have my first scan in a couple of weeks it will be good news, but it is a worry. It is a battle of why me and that is what your sister will be feeling. I still haven't told friends that I have't seen about it, why I don't know I. But new people I meet don't treat me any different then before. I have been told I am a very strong person with what I have been through and so is your sister. It is a life changing experience. It you have any question you are more then welcome to contact me. Where did you sister have surgery? Mind was Mr Kerr in Oxfordshire.
Take care
Steph
Xx

[ppearl214]

I agree with Jim and all regarding BANA and worth checking into them as a British ANA support network.  My husband is from England and my inlaws are in Dorset.  During one of our trips over, I noted to folks here re: a breakfast I wanted to organize to meet AN'ers in the area. I was amazed for those that came and met up with us.  The small town where my inlaws are located actually brought together 3 AN'ers!  Was totally shocked on that one.

Reaching out here is a terrific idea (many here from the UK on these forums) as well as the BANA. Hope it helps.
Cheers!
Phyl