Author Topic: Cindys Nerve Ablaision Experience....11/2010  (Read 60555 times)

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #15 on: November 13, 2010, 01:15:35 pm »
As they say:   A little can go a long way....get those suckers!

I'm so excited for you both!
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

Captain Deb

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #16 on: November 13, 2010, 02:14:29 pm »
One thing that I have been doing since the peripheral lumbar nerve blocks on Monday is keeping a pain journal--pain level when I wake up, activity level during the day, meds I take and what time, sleep disturbances and headaches.  I have no doubt I'm experiencing a little rebound headache from the Percocet.  I can't wait till this is over and they can start on my head!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #17 on: November 14, 2010, 03:39:21 pm »
I did not sleep well lastnight......very uncomfortable....Heres a funny story....i had some indigestion about midnight ....got up to some peptobismol....back to bed....got up this mourn and my tongue had a black film on it....of course i am thinking OMG am i bleeding internally?Is this black coming from ablaision?i noticed the same thing a yesterday....thought about it most of the day...checked my tongue a couple times looked down my throat...then low and behold googled why the black tongue???Turns out to be side effect of peptobismol.....who knew...much relief.
Got out to flee market and to nursing home to see a friend....just Gabepenton before i left....4 hours later after alot of walking and talking...stiff neck ...sore injection site...some swelling.....1/2 percocette and tanazidine muscle relaxer..little relief////other 1/2 of percocette and i am cleaning all surfaces w/ the multi surface pledge.
Now forcing myself to relax w/ my bearded dragon on the couch.Thinking about raiding the halloween candy. ;D
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #18 on: November 14, 2010, 06:05:29 pm »
Hi Cindy,
Thank goodness for Google and glad to know your black tongue isn't anything more than a reaction to Pepto Bismol.  Who would've known?

I'm so glad you're coming along, but don't overdo it just because you're feeling well.   Remember:  Baby Steps!
Hope you sleep well tonight.
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

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #19 on: November 15, 2010, 04:08:59 pm »
Did some running around this mourning...errands...phone calls..paperwork
Resting now....sore.and still swollen....wierd its sore but numb at the same time.
No muscle spasms...greater balance....yay~
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #20 on: November 15, 2010, 04:34:56 pm »
That's great news, Cindy!!!  I hope the soreness goes away in a week's time.   Did they tell you to put ice on the area?  My accupuncturist put an ice pack on my skull where the occipital nerve block was.

Heal FAST!!!
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

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #21 on: November 16, 2010, 11:45:46 am »
Today....woke up very sore 3am.....ice....back to sleep till 630 up at 8am.. pain....muscle relaxer,gabepenton,percocette
feeling better....dishes vacume laundry...bath the bearded dragon...feed...cleaned out a junk draw......
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #22 on: November 16, 2010, 09:48:53 pm »
 >:(   Doesn't sound good, Cindy.   Did you call the doctor and ask for a follow up appt.  I think he should see you, no?

What pray tell is the bearded dragon?

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

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #23 on: November 17, 2010, 09:45:31 am »
Hi All......Today is one week since the ablaision....still swollen still icing pain...no headache or wonky head....as a matyter of fact i have not had the wonky head since the ablaision.. ;D...you kno...the feeling like you have a bowling ball on your head...fullness in inner ear canal..GONE!
Its a beautiful day here inn NH sunshine and i have my flip flops on ..iced coffee....Is life getting better??
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Lizard

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #24 on: November 17, 2010, 12:59:23 pm »
I'm so very happy for you, and I think the soreness etc is normal after they do this procedure (if I'm correct) so I wouldn't worry too much about that.  Just enjoy the beautiful day, its warm in CT today too...probably last one for a long time.
This is great news!!!!!!!!
 ;D ;D ;D
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #25 on: November 17, 2010, 02:15:59 pm »
That's great news.  Keep healing and moving on with your life.  I have that feeling in the last week that's what we're doing.   We're making lots of progress.   I went to an OD yesterday and he worked on my spine with some kind of Reiki touching.   He said it should take five visits to work.  I've got a pre-op appointment with the pain doctor on Monday and then a nerve block appointment on Tuesday under sedation.  Cross your fingers.
 
It's a beautiful day outside here to.  We had big storms last night and now it's perfect out.  I've got a headache brewing so better go take some Alleve.

Hugs,
Mei Mei    :D
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

staypoz

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #26 on: November 17, 2010, 03:23:56 pm »
Congratulations, Cindy!  Hope you keep getting better every day!

staypoz

Jim Scott

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #27 on: November 17, 2010, 03:35:12 pm »
Great news, Cindy!  May your pain-free days continue, unabated. :)

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.

Captain Deb

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #28 on: November 17, 2010, 10:37:23 pm »
Hi All......Today is one week since the ablaision....still swollen still icing pain...no headache or wonky head....as a matyter of fact i have not had the wonky head since the ablaision.. ;D...you kno...the feeling like you have a bowling ball on your head...fullness in inner ear canal..GONE!
Its a beautiful day here inn NH sunshine and i have my flip flops on ..iced coffee....Is life getting better??

Yes! "Bowling Ball Head!!"  I've had it at one level or another since I woke up from surgery almost 8 years ago.  I describe it like a low grade pressure headache in the back of my head--my description is often the "elephant that is sitting on my head."  You mean yours is GONE????  How wonderful.  I'm sure mine is cause by something that has stretched, scarred or somehow damaged a major nerve--probably more than one--in my occipital area. 

It kinda looks like this guy, too.....


Hopefully I will have good results, too and we can show up in Cinncinatti and share our stories at the headache workshops and roundtable discussions.  No one should have to go on like this for 8 years or even 1 year if we find that this works on our particular cases.  I'm sure there are other headachers out there whose headaches stem from different sources, but doing tons of research, studying the anatomy, and seeing good specialists who don't dismiss you as drug-seekers or uninformed patients or cry-babies, can give us a better picture of the mechanical aspect of just what the hell is wrong and how to fix it! Even more important is the information the docs can get on how not to let this happen to patients to begin with.  At Loyola the new protocol is to position the paitients head prior to anesthesia and make sure they aren't shredding and tearing the nerves and ligaments all over the place (which you would notice if you were awake because you'd be yelling your head off) They don't give you the happy juice until they have positioned you comfortably for your surgery--Their headahe rate dropped by something like 70%--go figure.

At House I did try to tell the anesthesiologist I had neck stiffness just as I was drifting off. During my pre-ops I mentioned headaches and was told ANs didn't cause headaches.  What I had was a mild case of occipital neuralgia that the surgery turned into a MAJOR case of occipital neualgia--I had to figure that one out by myself after I was diagnosed with a dozen other conditions and treated with expensive drugs that didn't work and gave me horrible side effects. When all I really have is a simple "wiring problem" with a few options to try to get the "wires" to not send bad signals to my brain anymore.  The folks who do this are mainly anesthesiologists who specialize in Pain Medicine--a rapidly gowing field.  It's all my Dr Mark Hines does and man does he have some great procedures, however, some are not covered by Medicare or Insurance yet.  Prolotherapy and stem-cell therapy are two examples of those.  Mostly they are used by elite athletes which speeds up their healing time--all on the up and up--no performance-enhancing illegal stuff.

The ones covered by medicare we are considering are pulsed radiofrequency nerve ablation. non-pulsed radiofrequency ablation, and chemoneurolysys of the nerve, which is a lot like prolotherapy, but covered by Medicare.  Prolotherapy involves creating tiny areas of inflamation around the ligaments and tendons you are trying to heal--inflammation is the bodys natural response to healing.  Don't know alot about it yet, but still researching.

Anyway, Cin, I wish you sooooooooo much luck and I hope this is the end of your pain or at least bites a big chunk out of it. Hope you feel better soon and remember--"one day at a time, baby!"

Capt Deb

Have a great Thanksgiving!
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #29 on: November 18, 2010, 09:40:28 am »
Thanks for the boatload of info Deb. ;D
Today is day 8 and i still have alot of swelling...but as you said swelling is the bodies response to healing....and i was for warned of this.
Today i am going to try just tylenol and my usuall 300mg gabepenton and 1/2 of tramadol around 2 if things get rough.
i do not think its good to take the muscle relaxer and percocette everyday....besides yesterday i was a bear all day...grrrrrrrr
I have had to take amnitryptline for the last few nights to sleep.
Raked yesterday and got bored and broke out the sewing machine and hemmed a pair of yoga pants and a made a bootleg pair of American Eagle pants into super straights...love these pants they are chocolate brown and soft and have a little turqoise moose on the front hip pocket....bablin..
I have not sewed since before surgery....due to neck and head killing me....
See how the day goes w/o the major pain meds.
Vacumed dishes.....sore....took a muscle relaxer....I guess they tell you to take them after for a reason!
« Last Edit: November 18, 2010, 12:08:36 pm by cin605 »
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old