where is all the help they said i would get

[cheza]

Hi all
I have hit a brick wall,

I need help, I am trying to find a physio who can help my facial problems, its been almost 4 months now since my op and I still hvaen't had any movement on the left side of my face, not even a twitch, My doctors have suggested having physio, but, it seems there are no physio's  on the NHS in the northwest (Manchester area) this is a huge shock to me, I was assured by the doctors before surgery that all the help that I may need after surgery would be available to me, and now I find out it isn't and that a first conseltaion will cost me upto £140 not exactly cheap and if I need to go a couple of times a week it could be costing me between £130 - £160 per week.

Its not the money that bothers me, its the principle, I was told the help would be there and now I feel as though I'm being pushed aside, the doctors did thier job, they got the tumour out, and i'm now left putting all the pieces back together again, I'm really down at the moment, this last bit of news didn't fill with hope and entusiasem.

I'm dreading going back to work next month, my face is still bad, my eye won't close, and to be honest I just feel like a freak. I'm sorry, that sound horriable, I know I'm not like that, but I can't help how i feel, I know people stare at me, I also know that when I have been talking for a while I find it harder and harder to pronounce certian words and I can feel myself drooling, (not very attractive), Sorry to moan.

I'm at the doctors tomorrow so I'll let alot of my stresses out there, not only that yesterday I recived a letter from the hospital for an MRI IAM scan for this tuesday, which all seems a bit rushed, why an appointment so soon after surgery and so suddenly requested? so thats worried me too, I can feel myself falling apart again, I've even started having small panic attacks again, which I haven't had for some time now.

I hope someone out there can give me some advice.

Yours thankfuly

Cheryl XxX 

[sgerrard]

Uh, oh.   

Don't apologize for moaning, it sounds like you are entitled to it. What is up with your NHS? I don't get how the doctors can say that the help you need would be available, and now they say "oh we don't have any physio's in the northwest." Tell them to fly you to the southeast, then, or wherever they do have them.

I'm sorry to hear that you aren't getting any movement yet. I know that facial nerve things can take a long time, so don't give up on it yet. Do you have to go back to work next month? Maybe you can get some extra leave, based on the lack of progress so far in recovering your facial nerve function. What sort of work do you do? I'm sure people will take a good look at you, but most people are decent folk, and should understand medical situations well enough not to make you uncomfortable about your appearance. None of us would mind.

I wouldn't worry about the MRI, getting a follow up scan after 4 months seems reasonable. Maybe they are looking for something that has to do with the facial nerve, or they need the scan to justify the physio, or something.

I hope you feel better soon, something will work out, it just may take some time.

Steve

[nancyann]

Hi Cheryl:   What you're told pre-op isn't always the reality post-op, is it?  I find that unfortunate.   If you've seen ANY kind of signs of your facial
nerve trying to regenerate, you really should see a facial retrainer.   If you have to travel, then that's the deal.   I've heard people who have 1 or 2
sessions, then take what they've learned back home & really work hard at the exercises they've been taught, returning to the therapist every 1-2
months.

I know how you feel about your appearance.  I had to go back to work 2 months post op out of necessity, & I can tell you it isn't easy, but you
will get thru it.    I tried to ignore as much as possible the stares from people.   Just keep your head up & go about your day.
Are you having EMGs done routinely?  I had them every 3-4 months.  At 1st the docs thought my nerve was going to regenerate, but the #s never
continued to climb, so I opted for reconstructive surgery.

If after a year or two there are definitely no signs of any regeneration, you have the nerve graft to consider, or (like my surgery), the Temporalis tendon transfer.

I know this is a rough time for you.   Cry when you need to.   Be patient with yourself, you will get thru this.    After 1 1/2 years of total paralysis, I opted for surgery.
I had no signs of nerve regeneration, nada, not a twitch.

Try to keep a peaceful heart,   Nancy

[cheza]

I'm a caterer, in an open kitchen, I know your right, most people wouldn't mind and would probably be very kind and understanding, I think its more my own self conciousness, plus the fact that I'm a bit down right now which isn't like me at all, but the slightest things do upset me, I'm quiet volietile (excuse spelling) at the mo.
Hopefuly I'll feel better after my visit to the docs tomorrow.

[cheza]

Hi nancy

what are EMGs??? So far I have had nothing no help, I feel as though I've been left on my own and had nothing explained to me!

[nancyann]

EMG = electromyography.   It basically measures the electrical impulses in the muscle.   The neurologist inserts a needle in 3 different areas of the face,
has you try to pucker, squint, etc.,  then measures for muscle movement.   Also, they'll attach what look like tiny EKG leads around your face, then with
something that looks & works like a cattle prod, puts it against your throat & increases the electrical impulse - again looking for muscle contraction.
(not pleasant).

I only had a slight muscle contraction in my chin area, but since nothing else ever happened, it was probably coming from the nerve on the opposite side.

I had them every 3 months after my surgery.   

[Kaybo]

cheza~
I'm so sorry that this is happening to you.  It is OK to be down & confused...sometimes...but you are alive and well and if others can't get past your face, you don't need them.  I hope that doesn't seem crass, but that is how I feel & what I have experienced.  I have had total (right-side) facial paralysis for 12 years now.  It is one of those things that if I stopped to think about it, I would lock myself in a closet and not come out, but I just don't have time for that!!  )  As I told someone else, God saw fit for me to still be on this Earth and I plan to make the most of it!!  Do I like looking like this?  NO, but there is just more to life!!  You are still not very far out and there are SOOOO many more options now than when I had surgery/reconstruction -- sounds like you might just have find them on your own.  I'm so sorry the information you got was misleading!  Good Luck -- if I can be of any help, please feel free to PM me!
K

[ppearl214]

Cheryl,

I can send you huggles from across the pond... and yes, those costs are very expensive (even by USA standards).... I wish I could offer up more and you certainly have the right to rant..... so from me... please hang in there... I'm thinking of you.

(..and btw, why do I have a feeling that my next trip over, you'll have to cook for me?  Good cook, eh?  Will hand deliver the huggles then).

Please hang in there... I'm thinking of you,
Phyl

[Jan D]

Did I understand that you need a physiotherapist near Manchester, England?  Diana Farragher (www.dianafarragher.co.uk) has been working with AN patients for over 25 years and she is located in Cheshire, very near Manchester.    I just found her on the internet last summer and actually made a trip to England to see her.  I agree that it isn't cheap, but I am very hopeful based on the treatments that she has given me.  You can find more info on her website. 

I have had facial palsy for over 40 years and have found that most people are very kind.  We are our own worst critics.  I had a long career in the court system in California and found that my problem never held me back from promotions, social events, getting married, having a child, etc.

It's very difficult to take that first step out the door into the cruel world, but once I did, I found that it wasn't as bad as I thought.

My doctors were no help at all - in fact they said there was nothing that could be done.  The greatest advocates are the people in this discussion forum.

My heart goes out to you. 

Jan

[FAITH40]

CHERYL,

I AM SORRY YOU ARE HAVING A HARD TIME. WE ALL UNDERSTAND!

HERE ARE SOME EXERCISES THAT YOU CAN DO AT HOME TO HELP THAT THE NEUROMUSCULAR RETRAINING SPECIALIST WOULD HAVE YOU DO... IT IS A START. I HOPE YOU WILL FEEL ENCOURAGED TODAY THAT THINGS WILL GET BETTER... IT IS JUST A PROCESS.

HAVE A GREAT DAY!
TAMMI ;)http://www.bellspalsy.ws/exercise.htm

[Jeanlea]

Cheryl,

It is hard when you go into surgery thinking things will be the same again when you come out and if they aren't the problems can be fixed.  I ended up with total paralysis on the left side right after surgery.  My facial nerve was not cut, but it must have been "near death" because it wasn't working.  It took 3 months before I had any movement at all, and that was so minimal nobody but me noticed it.  Do you have twitches in your face?  Those seem to mean that your nerve is trying to regenerate.
I am a teacher and went back to work 8 weeks after surgery.  Once people understood that I was still functioning the same as far as my thinking abilities they treated me just as before.  I consider it a blessing that I don't have to look at myself all day.  lol  After over 2 years now I have regained a decent smile and am sort of symmetrical when I speak. 
Hope you are feeling better.

Jean

[Cheryl R]

I am not trying to sound negative or be a party pooper but remember that exercises will not work until the nerve has healed enough to let the muscles work.         Facial muscles fibers are different than regular muscles so they will not atrophy from non use as other muscles can.      The nerve healing can be very slow.   
Facial therapists vary over when they say patients can do exercises.      Jackie in Wisconsin in many cases doesn't want to see a pt until a year after surgery in order to see what healing will take place.
I do know from personal experience twice on how hard this is to wait.      I did vist Jackie for a half day session for the tightness and synkinesis after my first surgery.         This time around I do have some synkinesis but have not really let it bother me or actually hardly even notice it this time around.        I had a nerve graft done when had surgery for a facial neuroma.     It took about a year for my face to come back to where look pretty normal at rest. I do not have complete movement back and never will but have seen improvement even yet and will soon be 2 yrs.    I now have complete eye closure and improvement in the dry eye.    Some days I never put in any drops and occ days have to 2-4 times. I still do gel at night.   I never did do a gold weight.
  I think people are more curious when they see a person with facial paralysis as to the cause.    It is almost interesting to see people reactions and you can see they want to ask about it but don't know how.      I am a nurse so am in the public eye.    One pt asked how long I had had problems which was an original way to ask.                  I now get questions when say I have hearing problems and people say I am too young to have such a thing.               
My family says I think too much about my  AN and NF2 issues.        I do not think I do and live a normal life in spite of it all.   One does not really understand until you are living with the various annoyances and deficits.     
                                                   Cheryl R

[4cm in Pacific Northwest]

Cheza,

Wow where did our new “Jan Dâ€? come from?  What a gem to find you a link to somewhere there in England. (What a great forum this is!)

Cheryl R is correct- exercise should not start until the first signs of movement. Gentle surface touching of the face is recommended to stimulate. (Are you feeling touch ok?) If you have the touch sensation then also try heat.


I have read that some people do not get any movement until month 6, I was told it could take anywhere from 3 months to 3 years for resolve (“Years!â€?… I gasped) … At 3 months and 5 days (not that I was counting or anything  ) I had my first mm of movement.  Do not try to mold the face into a smile or aggressively message it until there are signs of movement as this may cause synkinesis later.

Go to the link Jan D has given you. If this is not geographically close to you - see if that clinic knows of a PT closer to you. This little book they produced there might be a good resources for you to own- there in GB.
http://www.dianafarragher.co.uk/bookform.htm


Always remember the pen is mightier than the sword. Try to walk off any anger or frustration and then sit down and write to your surgeon. Explain your frustration and why you need assistance getting to a PT. Perhaps provide some samples and testimonies of others who had success with this (website, books etc)

Document all your discussion with your physician. In the socialized health word it is best to fight bureaucratic paperwork with paperwork. (I was once a government employee... I can go on and on about it but I won’t… just advise, “document, document, document� everything.

Be patient and know you are not alone in this battle.

 I am currently trying to get physio in the USA PNW – with not many leads. Believe me when I am done with this (and even if I have to fly out of state with some ANA buddies) – word will be out that that my region has a shortage and need for these sort of trained therapists… and surgeons (and/or their support staff) should have more follow up responsibility to their patents.

Are there other AN patients you can network  in England with?

Hang in there Cheza!

HUGS!!

Keep moving foreword!

4

P.S. Stay clear of caffeine and alcohol until there are movement signs- as these DO effect the nervous system. No doubt my new coffee consumption was increasing the synkinesis. I have cut back and I am now getting some better muscle control of it. I am thinking that patients should stay clear of caffeine and alcohol until they are in the clearing of post op symptoms (Especially bells palsy)

[cheza]

how amazing  This site is the best, thank you all for being so positive and helpful,  not only that but thanks Jan D your post has been very usefull in fact its only down the road from me about 10miles not far at all  especially as i would have travlled to the other side of the country if needs must,

I love this site and all that frequent to it, Thanks again guys

I'll let you know how I go on'

Cheryl XxX 

[cheza]

Oh and Phyl,

Pop round any time love, I'll cook us up a real feast, Fish, chips and a nice cup o' tea,  how does that sound? nothing like some good old English grub!