Author Topic: where is all the help they said i would get  (Read 9380 times)

ppearl214

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Re: where is all the help they said i would get
« Reply #15 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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: where is all the help they said i would get
« Reply #16 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
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

tony

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Re: where is all the help they said i would get
« Reply #17 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

Don

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Re: where is all the help they said i would get
« Reply #18 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.......

4cm in Pacific Northwest

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Re: where is all the help they said i would get
« Reply #19 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




4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Don

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Re: where is all the help they said i would get
« Reply #20 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:(

sgerrard

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Re: where is all the help they said i would get
« Reply #21 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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

4cm in Pacific Northwest

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Re: where is all the help they said i would get
« Reply #22 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

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

sgerrard

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Re: where is all the help they said i would get
« Reply #23 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

« Last Edit: March 04, 2008, 01:20:08 am by sgerrard »
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Don

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Re: where is all the help they said i would get
« Reply #24 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.

jerseygirl

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Re: where is all the help they said i would get
« Reply #25 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
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

4cm in Pacific Northwest

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Re: where is all the help they said i would get
« Reply #26 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

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

jerseygirl

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Re: where is all the help they said i would get
« Reply #27 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
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

4cm in Pacific Northwest

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Re: where is all the help they said i would get
« Reply #28 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.



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 :)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

OMG16

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Re: where is all the help they said i would get
« Reply #29 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
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

 


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