Author Topic: Throwing in the towel....  (Read 11939 times)

cin605

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Re: Throwing in the towel....
« Reply #30 on: April 06, 2011, 09:43:41 AM »
Thanks Mel......i did speak w/ surgeon and he says that the scar tissue has shrunk a little and the problems i am having are not anything to do w/ the surgery?? ???
ENT on the other hand says its all post -op crap that probly isn't going to go away no matter how many peaople i get shuffled to.
i did vestub rehab for a year and the went back and di it again 6 months later....they got refered to the spine specialist who after 6 months refered me to sacral cranial therapy...
Soo...here isit today w/ vertigo /walking sideways,swelling behind the ear where incision was....muscles spasing out making my head feel like its shaking.Grrrr....
I ahve been going round and round trying to get a hearing aid...no ins wants to pay becouse i am not deaf in both ears??/
Audiologist suggested the hearing aid thinking this may be part of my balance issues..other side is not compensating.
Thanks everyone for all your help and advice.
HUGS!Cindy
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

mrmel

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Re: Throwing in the towel....
« Reply #31 on: April 06, 2011, 11:14:25 AM »
Cindy
 What I think would be worth while for you is to talk to an Ent surgeon that is familiar with the new BAHA device which is a bone conduction implant that is installed behind your deaf ear, and then you attach a small device to that and it makes it seem like you can hear on both sides. It is the latest technology. Insurance in new york state pays for it 100 % with no co pay. I am not sure what state you are in but if you were willing to come to upstate ny i could refer you to someone that is superb in this field, he is nationally known. It sounds like you are getting some poor information.
                            mel

ddaybrat

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Re: Throwing in the towel....
« Reply #32 on: April 24, 2011, 09:19:59 PM »
Cindy...

I had same surgery as you although my AN was not as large as yours.  I am almost 13 months out from surgery and understand completely what you mean about throwing in the towel.  I moved from Indiana to Nebraska 6 weeks after surgery so no longer have access to the neurosurgeon that did my surgery, but have found a superb substitute nearby. 

I have suffered from headaches since the beginning...searing, totally disabling, horrific headaches.  My original neurosurgeon had prescribed hydrocodone for them which was continued by my general practitioner here in Nebraska.  I was popping them like candy with no relief until my sister told me about rebound headaches.  I stopped taking them and spent several terrible days cleansing my system of them since I had managed to become addicted to them.  My GP and I had a serious discussion about them and she started playing musical migraine remedies even though I kept trying to explain to her that the headaches were not migraines. 

When my current neurosurgeon first saw me at 6 months post-op, he was pretty confident he knew the cause of my headaches and that he could 'fix' them until he saw my MRI.  He had assumed they were related to either the mesh or bone chips used to close the surgical site in my skull.  What he found was that nothing had been used to close the 'hole in my head'...thus, he could find no surgical cause for my headaches.

A few weeks ago, I saw a neurologist for the first time since my surgery.  He asked about a specific medication I was taking and asked me to describe the headaches.  Within minutes, he diagnosed me with neuralgia and prescribed neurontin for me.  The searing, painful scalp pain is almost gone.  I've still had a few really bad headaches, but now I know there are multiple things going on in my head that are causing pain. 

I guess what I'm trying to say is that I agree with everything everyone else has said....
   1.  Medications can cause headaches and they can be horrible.
   2.  Sometimes, the best medicine can be no medicine.
   3.  Doctors don't seem to know how to treat us.  They try, but we seem to know more than they do about what is wrong with
        us. 
   4.  Don't give up!  It might be the next professional you see or the next person you talk to or who posts online that can help you.
   5.  We are always here for you...ask questions, vent, whine, cry, laugh, whatever you need us for...

When I was first diagnosed, my neurosurgeon sent me home and told me to search the internet and educate myself as much as I could about ANs.  That was how I found this website.  There is a study out here that was done several years ago so the data is no longer current, but it really helped me to have patience with the professionals I've dealt with in the last year.  The main thing that I seemed to learn from it is that while the ability to diagnose an AN may be improving, the post-treatment care seems to be a broken record.  I don't think it's the medical community's fault so much as that more research is needed.  While most of us out here may have had the same type of tumor and generally are still in watch and wait status or have had it treated surgically or with some form of radiation, I do not believe there are two of us that have had the same identical combination of post-op complications.  We can usually find at least one other person who has experienced a similar complication or two, but we each have our own unique set of complications.  I think that makes it very difficult for most professionals to understand us and to know how to treat us.  That's why it's so important for us to help one another.  If you don't find what you need out here today, it might be here tomorrow or next week or next month.  Just hang in there...we're all praying for each other.
1.4 x 1.5 x 0.4 cm AN on left side
retromastoid craniectomy 3/31/2010
Dr. Randy Gehring - Lafayette, IN
Tinnitis, deafness
Vestibular nerves destroyed
4 months post-op:
Facial movement returning
Paralytic ectopic repair on lower lid
Transverse ligament adjustment on upper lid

cin605

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Re: Throwing in the towel....
« Reply #33 on: April 25, 2011, 01:52:31 PM »
Great to kno i am not the only one.
I have picked the towel back up ..so to speak...I am now trying Myofacial Release.
Mei Mei has had some luck w/ it and her head aches are gone..I on the other hand do not have a problem w/ the head aches its more pain at the surgical sit radiating down the tip of my spine to the middle back area.therapist said its from the balncing act i have to do everyday..my muscles are tight and swollen around them.
Fingers crossed...this is the treatment.
All the Dr.s seem to agree that my vestub. is not right and may never be right.
Its been almost 3 years and the left has not been able to compensate.My ears feel full all the time not just right but the left also.Crappy tinitus in both ears...i have not lostany hearing in the left ear but right has high tone loss and percussis.
Trying some Claritan-D to dry things out...
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

jennifer7

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Re: Throwing in the towel....
« Reply #34 on: April 27, 2011, 06:45:10 PM »
It is so encouraging reading everyone's posts, thanks for sharing.  It's great to know there's someone who understands, as much as I try to explain my family and friends think it should be finished.  They can't understand the pain and frustration I feel.  I want it to be finished too.  The worst is work, they are giving me a really hard time about taking time off for PT and to see the pain specialist.  I'm afraid if the headaches don't end soon my job might. 
Jennifer
retrosig 2/10/10 1.2cm
headaches, facial weakness, tinnitus
hearing preserved :)

cin605

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Re: Throwing in the towel....
« Reply #35 on: April 28, 2011, 03:42:46 PM »
Jennifer...Have you looked in to your companys disability ins?
if you truly feel you can not work...and it has been a year...apply or SSD.
i needed no lawyer as i faxed them everysingle mri,dr visit ,PT ect....It took about 6 weeks.
Feel better soon,HUGS!Cindy
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

jennifer7

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Re: Throwing in the towel....
« Reply #36 on: April 30, 2011, 04:57:33 PM »
Hi Cindy
Now I can work, a few months ago was a real struggle but the further out from surgery the easier it gets. 
My employers don't appreciate me taking time off for therapies and Dr appts for the headaches, I'm afraid they may end my job.  I know it is illegal to fire me because of my headaches but I'm afraid they will lay me off or cut back on my hours so much that I won't be able to pay the bills.  They have not been the nicest people since I came back after surgery before they were all encouraging; they have caused a lot of stress which I'm sure contributes to slower healing. 
I really don't understand people  ???
But I've had two cervical epidurals and its been 9 days without a headache :D so maybe things will get better at work for the next 9 days too ::)
 
retrosig 2/10/10 1.2cm
headaches, facial weakness, tinnitus
hearing preserved :)

lauralynn

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Re: Throwing in the towel....
« Reply #37 on: May 02, 2011, 11:16:12 AM »
Hello Cindy,

I just had my 2nd year Post op anniversary.  I can understand your frustration.  I have gone to this doctor, that doctor, tried this medication and that medication...have tried everything under the sun!  I thought I'd feel a little better by now...but I feel pretty lousy everyday.  I wake up and I feel like someone beat on my face and head all night.  I'm tired and exhausted 24/7 and I deal with facial nerve pain daily too.  My body is so weak it's pathetic....feel so fragile.  I went back to work 6 months after my surgery but I am now on disability through my employer.  Like Jennifer...my employer was not too nice to me when I returned to work.  I even got written up for going to doctor appts.  I was on a final notice and was close to losing my job.  So very thankful that God made it possible for my disability to be approved (they denied it initially).   I've been off of work for a little over two months now and I thought that would help me to feel somewhat better.  I feel just as lousy.  So like you said...there are days I feel like throwing in the towel too.  I won't ever do that...I will never give up.  Us ANer's are strong survivors!  No one should ever mess with us!   :P

My best advice is to have a strong support system, keep in touch with the forum and get lots of rest.  On those days you feel like throwing in the towel...come to your AN family.  We are always here.  You can PM anytime.  Let me know if you would like to talk (i'll give you my number through a PM).  Have you looked into Pain Management?  I'm going to look into that for myself as well.  You are in my prayers.

God Bless,

Laura Lynn

4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

Chances3

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Re: Throwing in the towel....
« Reply #38 on: May 02, 2011, 12:13:12 PM »
Cindy,

Vent vent vent !!  I'm new here, but people have been so supportive.  I'm 6 months post op AN, I am fighting everyday to get my life back.  I have a very sick wife
who has been told by three different back surgeons your condition is too risky to operate on.  They are making her a bed ridden drug addict.  Not sure what your relationship status is, if you're a single gal, seek out a good friend for time and support, don't do this alone.

I have you in my prayers !

cin605

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Re: Throwing in the towel....
« Reply #39 on: May 05, 2011, 06:38:12 PM »
Single...I am!I do have a great support system...My Mom and 3 sisters and 2 brothers and some very dear friends.Thank God.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Silver Sonnet

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Re: Throwing in the towel....
« Reply #40 on: September 18, 2011, 06:26:40 PM »
My family calls them rice socks, and the cloves or any other spice you like do smell nice.  (I like cinnamon sticks sometimes).  My daughter makes them to give out as Christmas gifts.

One tip:  if you store the sock in the freezer between uses, it will get even more steamy when you microwave it.  Now that I think about it, maybe I feel a sore neck coming on right now....

;)

Mei Mei

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Re: Throwing in the towel....
« Reply #41 on: October 02, 2011, 04:45:20 PM »
Dear Cindy,
I'm just catching up here and am just burned out from running around in order to recover.   I wouldn't wish this recovery process on anybody.

I also saw your comment about cable fees and would definitely drop the cable for the club.   Here is what my daughter sent me.  She gets free cable with a ROKU box that streams it to your TV.   It costs around $89 and for an Apple TV that does the same thing is $99.  ROKU has a $99 fancy box too.   Here's the scoop:

The box we have is called ROKU.  You can also get Apple TV.

Here is some more infomation about TV:

http://www.moneytalksnews.com/2010/06/30/you-dont-have-to-pay-for-cable-tv/
-

Go for it and then get the gym with hot tub membership.   Yes, Cindy, you can have it all!
Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Mei Mei

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Re: Throwing in the towel....
« Reply #42 on: January 08, 2012, 08:44:41 PM »
Someone told me that red beans work better than the rice. Red Beans last two hours and we need all the time we can get on this.    I got to bed with it, nap with it and wake up in the morning with it on the sofa before I have my coffee.   My original bag that I got at Whole Foods and Amazon is filled with Flax seed.    There's a newer bag out by Earth Therepeutics with Lavendar and Chamomile.   

On the headache issue, I can't say enough for Dr. Ducic at Georgetown.    The surgery is simple and relieves all of these issues.   He referred me to a Neurologist who said I have Cervical Dystonia.   I am now scheduled and approved for Xeomin (Botox) shots every three months.
My new Myofacial Release Therapist is fantastic.  He said it would take four to six weeks and needling and strengthening exercises.   The needling broke up so much pain last week that I slept for 3 days.   They were not trained with Michael Barnes in PA but are certified in Myofacial Release Therapy and one of them in what is called Benign Paroxsysmal Vertibular Therapy.
Check out their resumes here where you can see the kind of certification you are looking for.

http://whiteoaktherapy.com/?page_id=2
They are against Botox shots because he says it weakens your muscles.    I gave them each others emails and they are discussing the matter to make a decision as to have I should proceed.   My Botox appt is Jan 26th.    We'll get this sorted out somehow.

I can't encourage you enough to go to Dr. Ducic.   Already several people like Liz from Connecticut and Tina Holmes from Tenn have gone and are so happy about it.   The surgery is a no brainer if you'll pardon the pun.   You will wake up easily and be ready to go home.

Here is his website:

http://www.drducicplasticsurgery.com/Ducic_Plastic_Surgery/Home.html

At least fill out the forms and wait back for what he suggests.   He won't invite you if he doesn't think he help you.

Here's to a healthy new year filled with Happiness and Good Fortune.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Mei Mei

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Re: Throwing in the towel....
« Reply #43 on: January 27, 2012, 02:41:52 AM »
Had a disappointment today when I went to Georgetown.     I had written the neurologist, Dr. Amjad a note about the fact that the PT I am seeing for Myofacial Release Therapy did not want me to get Xeomin/Botox injections today because of my Ehlers Danlos Syndrom.    Botox weakens your muscle and the pain I am having is neuropathic  with a lot of stinging and that kind of pain cannot be helped with Botox/Xeomin.

We have to find a way out of this circus.   I came close to throwing in the towel today.   We just have to survive and not give up on the long road.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Dee-dee

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Re: Throwing in the towel....
« Reply #44 on: January 28, 2012, 06:20:32 AM »
I would recommend a Buckey pillow for the neck (buy on line) and I was told as to meds, take them every day as prescribed.  You can't just take them when the pain is really bad because taking the medication intermittently causes headaches in and of itself.

You are not alone.  Don't throw in the towel...

Best
,

Dee-dee

2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

 


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