ANA Discussion Forum

General Category => AN Issues => Topic started by: cheza on February 10, 2008, 06:11:23 pm

Title: where is all the help they said i would get
Post by: cheza on February 10, 2008, 06:11:23 pm
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  :(
Title: Re: where is all the help they said i would get
Post by: sgerrard on February 10, 2008, 06:25:21 pm
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
Title: Re: where is all the help they said i would get
Post by: nancyann on February 10, 2008, 06:30:51 pm
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
Title: Re: where is all the help they said i would get
Post by: cheza on February 10, 2008, 06:33:30 pm
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.
Title: Re: where is all the help they said i would get
Post by: cheza on February 10, 2008, 06:36:59 pm
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!
Title: Re: where is all the help they said i would get
Post by: nancyann on February 10, 2008, 07:11:08 pm
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.   
Title: Re: where is all the help they said i would get
Post by: Kaybo on February 10, 2008, 07:30:26 pm
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!!  :o)  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
Title: Re: where is all the help they said i would get
Post by: ppearl214 on February 10, 2008, 07:50:13 pm
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
Title: Re: where is all the help they said i would get
Post by: Jan D on February 10, 2008, 08:08:15 pm
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
Title: Re: where is all the help they said i would get
Post by: FAITH40 on February 11, 2008, 07:47:33 am
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
Title: Re: where is all the help they said i would get
Post by: Jeanlea on February 11, 2008, 10:03:57 am
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
Title: Re: where is all the help they said i would get
Post by: Cheryl R on February 11, 2008, 11:14:36 am
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
Title: Re: where is all the help they said i would get
Post by: 4cm in Pacific Northwest on February 11, 2008, 02:11:27 pm
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)




Title: Re: where is all the help they said i would get
Post by: cheza on February 11, 2008, 02:45:25 pm

how amazing  :o This site is the best, thank you all for being so positive and helpful,  ;D 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  :-*
Title: Re: where is all the help they said i would get
Post by: cheza on February 11, 2008, 02:49:35 pm

Oh and Phyl,

Pop round any time love, I'll cook us up a real feast, Fish, chips and a nice cup o' tea,  :D how does that sound? nothing like some good old English grub!
Title: Re: where is all the help they said i would get
Post by: ppearl214 on February 11, 2008, 03:09:35 pm

Oh and Phyl,

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

Cheryl, throw in some Jaffa Cakes, UK Cadbury Fruit and Nut as well as scones with clotted cream and I'm there!  :)  You're on! I KNOW your fish/chips are going to be MUCH better than Ollie's! :)
Hang in there!!!!!!!!!!!!!
Phyl
Title: Re: where is all the help they said i would get
Post by: Jim Scott on February 11, 2008, 03:53:57 pm
Hi, Cheryl:

I'm so sorry your post-op experience is becoming so stressful and depressing.  Unfortunately, I've read similar accounts from U.S. patients so, as much as I'm opposed to 'socialized medicine', I can't really put all the blame on 'the system'.  I think that doctors, especially surgeons, compartmentalize patients and once their work is successfully completed (i.e. surgery), they tend to lose interest and go on to the next surgical case.  Sort of like a plumber not being too interested in your electrical problems, even though electric pumps may feed water through your home.  Its not his specialty so he doesn't have much interest in that particular aspect of your home's function.  That kind of attitude in a doctor-patient relationship may be short-sighted but I believe its common, based on  posts I've read here.

I'm a big advocate of the patient taking control of their own treatment, so to speak.  That can take many forms but it usually comes down to seeking out what you need, whether or not a doctor helps or even agrees.  With the NHS, you are limited in your options, which is unfortunate.  Almost $300. (U.S.) for a consultation is outrageous but if you can afford this (and subsequent high fees) I would seriously consider going that route.  Only a licensed physician can advise you on the prognosis regarding your chances and a possible timeframe for regaining facial mobility - and they can be wrong - but having an MRI four months post-op is not terribly ominous.  I had one immediately after my surgery and have had four since (in 20 months) so I wouldn't be too concerned. 

The self-consciousness you mentioned is perfectly normal and so is the stress.  I trust you'll get this all sorted out soon and can begin physiotherapy to help your facial paralysis improve.  I would make clear to your doctor that this is a major concern for you, that you consider it part of your healing process and that you are disappointed in the apparent lack of concern on his part (if that is the case).  Don't be accusatory or angry, but calmly make it known that regaining facial movement (at least some, if not all) is not simply a 'side issue' but a major issue for you and that you are ready and willing to do what is necessary on your part to address this problem.  In effect, putting the ball in his court, if you'll allow the metaphor.  :)

Please try not to be melancholy over this and know that things will improve and you'll feel better soon.  We always do.

Jim
Title: Re: where is all the help they said i would get
Post by: tony on March 01, 2008, 02:48:04 am
Sorry I do appologise
I really hadnt worked out this was a UK request
Firstly dont take it personal - the UK is the only health service
in the world that will do one half of an OP - but not do the
required phsyio to finish the job...
One leading surgeon in the area is considering no longer
doing the face-nerve-rejoin OP because the support services
undermine the chances of success...
I think the lindens clinic is an excellant option
I am unclear if they can or will do NHS work given the right
paperwork etc etc
In terms of time frame - even once work starts it may still
be many months to finish - so patience and effort required
Can I wish you well with recovery ?
Best Regards
Tony
Title: Re: where is all the help they said i would get
Post by: Don on March 01, 2008, 07:04:56 pm
 Hi Cheza well dont know how it is in Merry old England but I doubt if there is ANYBODY on this board who has less access to services than I, I live on the island of Lanai in Maui county Hawaii with at one time one GP doctor I think we now have 2 the only thing you can really do here proper is die I suppose, granted Iam not a doctor but I have been cut on enough to know each time causes damage an example was back in 1997 a type of fish we have here almost cut the tip of my right middle finger off I only regained feeling in it ten years later. I had a botched gall bladder surgery inh 2005 and now have an 18" scar on my right side as a result and still have no feeling on the skin of my stomach and could use my navel for an ashtray if I still smoked since I didnt have access to OT and PT I had to be creative and you can do this where you live, I take it your young and this is a problem as we as young people were taught its not polite to stare at people who are different so therefore, we feel people notice us? If you have a rest home near by do go there EVERYDAY and visit the patients they helped so much in my recovery as they are used to people who cant hear so good and have runny eyes and droopy faces the #1 rule is you cant be old and stupid as the stupid ones get sorted out along the way and by spending time with these folks it will build your confidence and best of all its free and since I have a new circle of friends and even get invited to Senior beach parties where the gals dont mind if I cant dance as frisky as I used to it takes ages for nerve damage to heal but it will and we have to work with it every wake moment as our brains will rewire themselves to the disability if you let them go to Amazon.com and get a copy of the book The Brain That Heals Itself by Dr. Norman Doidge I would recommend it to anybody with brain issues it sure has helped me and dont worry what people think you arent out to impress them anyways its all about how you feel right now.......
Title: Re: where is all the help they said i would get
Post by: 4cm in Pacific Northwest on March 01, 2008, 10:46:44 pm
Well Don sure has got my interested up and I am certainly going to see if I can get his recommended book, The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science   by Dr. Norman Doidge -from the library.

Here is the USA Amazon link if anyone else is interested.

http://www.amazon.com/gp/product/067003830X/ref=cm_cr_pr_product_top

I love the cover of the book- it reminds me of Dr. Seuss’s Daisy Head Mayzie
http://www.amazon.com/Daisy-Head-Mayzie-Classic-Seuss-Dr/dp/0679867120


I bought a new bike helmet, today, as my old helmet does not cover that ole craniotomy hole. I was worried that ‘if’ I came off the bike and “got a ding on my old Bellâ€? (  ;) ar ar  :D) that my skull could crack at the stress point. (Making me a total crack up – ar ar  :D ::)) I’m determined that I AM going to get back on my old mountain bike and ride the safe, but not too steep and too dangerous, Oregon trails.

After months of research this was the helmet I came up with that will actually cover the base of the skull and most importantly “the hole�. So I thought I would just share this – in case anyone else feel they want to try bike riding, post craniotomy.

http://www.bernunlimited.com/2007/berkeley.html

Although the ‘bern’ website says 99.99- I actually only paid 14.99 for it at REI from the 2007 clearance bin… So- it is worth shopping around.

I doubt I will be yelling out as I did in my youth, “Look Dad- no hands!� … but hey I AM going to ride again. MMM I wonder if I can ride and chew gun and the same time. I am determined that “the brain can retrain�…

What do you think- should I get a plastic flower and stick it to the top of my helmet? Boppie- I hope you like that idea … it takes me back to this thread and makes me giggle.
http://anausa.org/forum/index.php?topic=5110.0
I’ll keep you posted …

BTW – Has anyone heard from Cheza recently? I had fish, chips, and a lovely spot of afternoon tea …and was thinking about her. I would love and update.

Ta ta for now darlings…

4




Title: Re: where is all the help they said i would get
Post by: Don on March 02, 2008, 03:18:20 am
4cm I am looking into buying  Yamaha TW 200 to thrash it may not travel at speeds unknown to man but at least I will get dirty again, will be starting a new osteo drug on Tuesday that is supposed to build bone strength so Im going for it? Will try the mountain bike thing again when I get more stamina, gave my aluminum framed Fuji away in 2000:(
Title: Re: where is all the help they said i would get
Post by: sgerrard on March 02, 2008, 10:13:37 pm
Well Don sure has got my interested up and I am certainly going to see if I can get his recommended book, The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science   by Dr. Norman Doidge -from the library.
Here is the USA Amazon link if anyone else is interested. http://www.amazon.com/gp/product/067003830X/ref=cm_cr_pr_product_top

I'll go for that. They mention Oliver Sachs, author of the entertaining but also insightful book "The Man Who Mistook His Wife for a Hat." That's got to be awkward... :D

Speaking of hats, 4, I think your helmet discovery is excellent, and at a bargain at $15; good for you, getting back on that mountain bike. And I would like to hear from Cheza again as well.

Steve
Title: Re: where is all the help they said i would get
Post by: 4cm in Pacific Northwest on March 02, 2008, 10:57:31 pm
As soon as someone tells me how to post a photo I will share the photo my husband took today, where I said “Look- NO hands!�… And succeeded to do so for 20 seconds… while riding my mountain bike.

(My 75 year-old Dad – is going to freak  :o when he sees the photo… if not cry with happiness  :) in seeing me do it again some 40 years later… when we all thought, post craniotomy, it was an impossible feat.)

Healing happens! Time and faith heals. 6 months ago, when they snipped my ole vestibular nerve to get “Ted the Tumor� out… and I was ever so tipsy - I never would have believed it myself.

Moving forward … I just got to keep moving forward…

4

Title: Re: where is all the help they said i would get
Post by: sgerrard on March 02, 2008, 11:23:10 pm
As soon as someone tells me how to post a photo I will share the photo my husband took today, where I said “Look- NO hands!�

Well I want to see that, so here goes:

You need a host for the picture. You can sign up at PhotoBucket: http://photobucket.com/. I just use the mini-web page that I get from Comcast. Any host will do.

Once you have posted the picture there, get the URL for it. Here is an example I found at photo bucket under mountain bikes:

http://i214.photobucket.com/albums/cc24/tapiccola10/Mountain%20Bike/me.jpg

In your post, click the Insert Image button (2nd row, 2nd button). That gets you

Code: [Select]
[img][/img]
Then paste the URL in between:

Code: [Select]
[img]http://i214.photobucket.com/albums/cc24/tapiccola10/Mountain%20Bike/me.jpg[/img]
Edited:
Without the "code" tags, you would get the image. I have removed it, since it was not 4, just an example, and 4 will be posting the real thing soon enough...

Okay, no excuses now, lets see what you look like!

Steve

Title: Re: where is all the help they said i would get
Post by: Don on March 03, 2008, 03:30:52 am
 My 80 year old mother will be worrying again about my new motorcycle?LOL some things never change. but she knows if Im on one again Im getting back to normal.
Title: Re: where is all the help they said i would get
Post by: jerseygirl on March 03, 2008, 08:22:53 am
4,

You look wonderful! Cangratulations on all your fabulous progress! I am so happy for you!

                 Eve
Title: Re: where is all the help they said i would get
Post by: 4cm in Pacific Northwest on March 03, 2008, 12:53:34 pm
Jerseygirl,

 :D

THAT IS NOT ME!

Steve just pulled a sample off of google images as an example of how to insert images on a thread. I hope to get miy "no hands" photo posted later today

Steve- I think you should modify and pull this photo off as everyone is getting all confused and also going to get the idea this is me and my face works now...
I have my balance back but NOT my full facial movement and symmetry.

4

Title: Re: where is all the help they said i would get
Post by: jerseygirl on March 03, 2008, 03:19:12 pm
4,

Too bad that the image is not yours! ;D i had a good laugh over it! I hope you look even better in real life and do you have all this gear that bikers use? It looks fantastic.

             Eve
Title: Re: where is all the help they said i would get
Post by: 4cm in Pacific Northwest on March 04, 2008, 10:59:14 pm
OK my wonderfully supportive AN family here is my "brag board photo" of me cycling with no hands 6 months post op at age 44.

(http://i271.photobucket.com/albums/jj159/ejfrie/100_0003.jpg)

I was able to do this “no hands trick� for only 20 seconds but hey I have come a long way from 6 months ago when I had to use a walker… and then when I did walk I was like a drunken sailor in the wind with my eye patch. Eyelid and balance works now … not sure what will happen in the ole facial palsy recovery though.

Nevertheless I was so thankful to be able to go with my family on a little bike trip.

HEALING DOES HAPPEN!

Keep moving forward,

4 :)
Title: Re: where is all the help they said i would get
Post by: OMG16 on March 04, 2008, 11:12:09 pm
Great picture!  I love it you should be so proud of yourself.  I am very proud of you.  You go girlfriend! 

I agree healing does happen and it is so nice of you to share this with us.  I feel honored to know such a great woman!  16
Title: Re: where is all the help they said i would get
Post by: Kate B on March 05, 2008, 05:26:04 am
OK my wonderfully supportive AN family here is my "brag board photo" of me cycling with no hands 6 months post op at age 44.

(http://i271.photobucket.com/albums/jj159/ejfrie/100_0003.jpg)

I was able to do this “no hands trick� for only 20 seconds but hey I have come a long way from 6 months ago when I had to use a walker… and then when I did walk I was like a drunken sailor in the wind with my eye patch. Eyelid and balance works now … not sure what will happen in the ole facial palsy recovery though.

Nevertheless I was so thankful to be able to go with my family on a little bike trip.

HEALING DOES HAPPEN!

Keep moving forward,

4 :)


4,

Awesome picture!!!!

20 seconds...Many people without AN surgery would not be able to ride hands free for 20 seconds.
You have come a longggg wayyyyy.

Your picture is truly an inspiration.

Kate
Title: Re: where is all the help they said i would get
Post by: Joef on March 05, 2008, 06:25:06 am
Great picture!!!

Its good your getting out and doing things, thats what makes our balance better .. just think like a kid.. whats do young (pre-teen) kids like to do ? .. run and play! .. gym bars in the playground etc... watch a very young baby learn to walk .. we do the same learnings once our balance is "new" .. remember we have the same balance tools of after sugery.. just our brain and "learned" to deal with it . we have to practice!.. "biking" "Kayaking" "walking" "run" etc ...

ps .. I'll try for a picture of me Kayaking once it warms a little
Title: Re: where is all the help they said i would get
Post by: sgerrard on March 06, 2008, 12:44:58 am
Oh, that was worth it!  :)  What a great shot, and a nice setting too. Balance, shmalance, that looks downright athletic to me!

It is great to hear how tickled you are by this accomplishment, you really are recovering well.

Let the healing continue!

Steve