Author Topic: Cindys Nerve Ablaision Experience....11/2010  (Read 57617 times)

cin605

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Cindys Nerve Ablaision Experience....11/2010
« on: November 11, 2010, 12:11:19 pm »
This is a new topic on my experience w/ Nerve Ablaision done by a top pain/Spine specialist.DrJergenson
at Wentworth Douglas Pain Center,Dover ,N.H.Sister is driving since they will not let me drive or sign any legal documents for the rest of the day after sedation...babababa..i wanna be sedated...
Two more days till nerve ablaision........ :o


Nerve ablaision is done .....it hurt pretty bad when they were doing it....they do not completely sedate you....like they did for blocks becouse they need you to be responsive....site is a bit swollen...sore...thye said it could be sore for 4-5 weeks or maybe not at all....sent me off w/ a script for percocette....ice paks....I will keep you guys posted....bring on the relief!
« Last Edit: November 11, 2010, 12:23:19 pm by cin605 »
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #1 on: November 11, 2010, 12:19:26 pm »
They were giving some kind of pain relievr through an IV during the proceedure....the nurse said when it hurts yell more drugs.....stiil hurt like hell....BUT today i do not feel too bad....woke up at 3 am and turned on the heating pad...took a lorazepam two tylenol and dozed back off till 8am....it not killing in the usual spot its more at injection sites....I have c2 c3 damage also....just went and got an iced coffee..i am hooked on McDonalds iced coffee luck its a minute from my place.
Go back for follow up right before Christmas....I think we may be onto some thing here.....My Dr...is well known spine specialist...they move my appointment earlier so he could fly of to san francisco for a seminar,he just got back from Washington...I say fly everywhere get knowledge and share,share,share.
they use teflon needles for the radio frequency so they do not stick to the nerve they are cauterizing ...i guess.
i am very grateful i saw this guy in the Wentworth Douglas Hospital flyer and asked my primary for a referal.
Seems like i have to tell these drs exactly what i need....gabepenton...ect.
I feel like maybe i should be taking some kind of course to help other people that go through this..and gather all thier resources and tell them how they should deal...go here..go there..skip the middle man.

Going to Dartmouth in Jan for audio work up to get referal for hearing aid.
I am not messing around w/anymore..
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #2 on: November 11, 2010, 12:21:56 pm »
  Re: Capt Deb's research file
« Reply #23 on: November 10, 2010, 04:58:09 PM »   

--------------------------------------------------------------------------------

Yeah Cin!
I am on the road towards this procedure with a really top notch pain specialist--'bout time after 8 years.  My personal theory is that our headaches are not "organic"headaches--caused by hormone imbalance or something systemic.  Hence the limited results we get with meds like Topamax and Imitrex.  They are more "mechanical" or "surgical trauma" headaches cause by disruption of nerves which occurred during surgery due to a number of different factors.  I believe that I had a mild case of occipital neuralgia before surgery since I have had neck problems and headaches for years.  I have had a number of "crashes" in my lifetime--a whiplash car accident in high school, a skiing wreck in my mid 20's and I got run over by a bunch of novice tourists on a motoring sailboat while I was windsurfing.  So my neck was a wreck to begin with and then it was jammed into a vice for 4 hours while they diddled around near my brainstem.  Yes, traumatic.

My plan with my new pain doc is to work on my back first and allow the Botox in my head to wear off so he can map out my headache pattern with more accuracy.  The Botox works pretty good, but I still get neck and occipital pain.  I am planning on nerve ablation or rhizotomy, which from my research seems to be pretty much the same thing.

On Monday I had over 40 shots in my lumbar region--peripheral nerve blocks--OOOOOUUUUCH!! Way more painful than I expected and no sedation.  He had to stop a few times to allow me to quit sobbing and calm down and I am pretty tough when it comes to pain.  I go back in 3 weeks for another set--he wrote me a Xanax prescription for next time so it shouldn't be so bad.  I have had SI joint injections--3 of them, but with limited results so he thinks that the pain is coming from the tendons and ligaments surrounding the sacroiliac joints rather than from the space inside the joint.  He has no doubt that this whole syndrome began with my 4 hr laparoscopic hysterectomy--yes I am the Queen of Complications.

After the second round of peripheral nerve blocks, and my pain is reduced, he will go in and ablate these same nerves, which involves going in with a radiofrequency needle and frying the nerves which will interrupt their function of sending pain signals to the brain.  My new GP had this done in her lumbar spine and she has never had pain since.

After all this is done my Botox should be worn off which I will be glad of since I look pretty strange--my eyebrows droop, kinda making me look like a Vulcan, but my forehead is smooth as a baby's butt.  I would rather have a few wrinkles than this weird expression since I wear my hair over my forehead anyway.

The plan is to do some nerve blocks in my neck, C2-C3, which I haven't done before and then some other blocks along the occipital nerves to see exactly where the irritation is located. I have had 5 occipital nerve blocks before, with fairly good results, but you can only have 6 a year. My new pain doc, Dr Hines,  maps out the bony structures with a fluoroscope and metal markers, giving much more pinpoint accuracy than the last pain doc I saw.  The last pain doc I saw was  the regular anesthesiologist at my local hospital who worked in the hospital's pain clinic, but the new one runs a specialty pain clinic and  all he does is pain medicine.  Again, if 2 blocks work we go in with either chemoneurolysis or ablation.  I'm doing more research on the difference betweeen the two.

So that's where I am in the process of getting my life back!  It has just sucked for 8 years either having a terrible headache every time I try to go to have some fun and lately doing nothing but sitting in a recliner watching TV and going to doctors appointments.  The biggest thing I have done was go to Philly and Chicago to the ANA symposiums, which were great, but I was in a lot of pain the whole time.  Kind of put a damper on a lot of the things I wanted to do.

I'll keep you posted on my progress, and again Cin, let us know how you progress.

Love and No Ache to you all!

Capt DebAAAAARRRRR!!!!!!!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #3 on: November 11, 2010, 12:37:48 pm »
Dear Deb and Cindy,
Thanks so much for the updates on your ablation and plans to get out of this pain situation.   I feel like I am a carbon copy of both of you with the exception that I had a retrosigmoid surgery.   My upper neck (probably C2-3) and sub occipital area have been in even more pain the last two weeks ever since I cracked two ribs helping my father on the weekend when the aides were off duty.  Nothing I do for the area helps, but the ribs are on the mend.   If it helps as added information, please tell your pain docs that a fellow ANers recently was in the ER for broken ribs and they gave her iv morphine that helped the ribs, but didn't touch the occipital or neck region pain.  I think it's useful information.

Wishing you all a pain free day!
Mei Mei
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 #4 on: November 11, 2010, 12:49:03 pm »
This procedure really is something and I'm keeping it in my bag of tricks, right now I'm pursuing another option, but if it doesn't work out I've got something to fall back on.  I truly hope this procedure relieves your pain for good!
Liz
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

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #5 on: November 11, 2010, 03:55:53 pm »
Took a pain reliver and a muscle relaxer....after i vacumed mopped and made pea soup....site is swollen a bit...still no pain in usual spot directly under incision site going down my neck....it usually hurts just to touch that area....does not hurt to sneez or bend over... ;D
I am heading back for the heating pad.
have a feeling it will be an early night tonight...
Oh yeh and i took my 15 3/4 year old for a driving lesson before i took the pain killer and muscle relaxer....i think the drive may have been a bit to much...looking back and forth and saying BREAK every two minutes! ::)Drivers Ed. December 7th...Sweet Sixteen Dec 14th.Day off for veterans Day from school.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #6 on: November 12, 2010, 09:11:27 am »
All i have to report this mourning is OUCH!!!!!!!!!I have an ice pak on ....just got up ...its 10am....still very swollen in the back of my neck.
Its a beautiful day here and i have got some paperwork to deliver to meet my deductable for medicaid..i do not see that happening...headed for the shower.
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 #7 on: November 12, 2010, 12:40:35 pm »
I think you probably already know what you are experiencing is totally normal, but the fact that you can sneeze and bend over is AMAZING!!!!!!  Hopefully you continue to see improvements.
Liz
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

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #8 on: November 12, 2010, 01:29:24 pm »
Yes Liz...they actually told me exactly what to expect.....I am trying to take it easy..no driving today...
pain is not in usuall spot,i can touch the side of my neck where pain used to be and feel nothing... ;D
It will take about 4 weeks they said for nerves to heal...maybe less depending on the person..like any recovery.
Paerwork will not go in till Monday anyway..so..might as well drop it off Monday.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Captain Deb

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #9 on: November 12, 2010, 04:39:13 pm »
Cin,
Can you tell me where on your neck/head you had the ablation done?  Occipital nerves in the back of your head or was it more in your neck area like C2-C3.  Did they mention facet joints?

I am so excited about this procedure--it has been so long that I have gotten through the day without some kind of a headache that I have forgotten what it is like to feel normal.

This is day 5 since my peripheral nerve blocks in my back--was really active Wednesday--walked all over Asheville and 4 hrs in a car.  Lots of pain and fatigue yesterday, but today I walked all over town with my Uncle, sat at a cafe in a HARD CHAIR for an hour and a half, and my pain level is relatively minimal right now.  This makes me think that if nerve ablation will work on my back,  nerve ablation will also work on my neck and head once my Botox wears off.

The best part is no more expensive, toxic medications to be on!!!!!!!!

I am really looking forward to all this being over with in time for the symposium so I can share my experience at the headache workshops there.  I met so many people at those workshops the past 2 symposiums that were still really suffering and so clueless as to what to do!  It will be good for the docs, too, to meet some patients who have overcome long-term post-op headaches.

I hope this procedure kicks in for you soon, hon--you are our current guinea pig!!

Hugs,

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 #10 on: November 12, 2010, 06:07:10 pm »
Hugs back Deb!                                                                                               
The area of the ablaision is about an inch to the right of c2 c3 there are four spots one is up in my hair line more towards the right in occipital area.....then three going down about an inch to the right of my spine....kind of goes in this shape    * head
I am less sore tonight as i tried to take it easy today.                                                                        s  *
                                                                                                                                                 p  *
                                                                                                                                                i  * base of neck
                                                                                                                                                n
                                                                                                                                                e
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Captain Deb

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #11 on: November 12, 2010, 07:29:36 pm »
Yep, they nailed the base of your occipital nerve as it leaves your spinal chord alright.  The occipital nerve refers pain all the way up over your head and into your eye socket. My headaches have always been preceded by intense neck pain on the surgical side that even goes down into the trapezius and shoulder at times.  My surgeon insisted it was not the occipital nerve because the nerve was not in the surgical field unlike  a retrosigmoid approach.  I insist it was a pre-existing problem that was aggravated by neck position during surgery.

I'm sure when Dr Hines starts on my neck/head area, he'll cover all the bases.  For the first time in a long time, I have HOPE!!!!!


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

Mei Mei

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #12 on: November 12, 2010, 09:03:59 pm »
I'm thrilled to read this, Captain Deb!!!   You have hope.   This is something we all want and reading about your news is so encouraging for all of us!

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

cin605

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #13 on: November 13, 2010, 09:12:52 am »
A couple months ago i went for a medial nerve block 3 actually....and i spoke up and said hey...the pain is to the right going down my neck....not to left ...not in the middle....Then he listened and said ohhh....theres theses little tiny nerves that branch out from c2 c3 and occipital area..they send pain signals to the brain if they are damaged...lets make it so they can not send any signals.
Today it is fairly numb back there....no pain....just a little stiff....yup...i said no pain!!!!!!!!!!!!!!!!!
As the nerves heal..i think i will feel less stiff.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Captain Deb

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Re: Cindys Nerve Ablaision Experience....11/2010
« Reply #14 on: November 13, 2010, 09:58:35 am »
My Dr Mark actually drew me pictures of those nerve branches!  Let's GET those suckers!  It's so amazing that such a little teeny area can cause such big huge PAIN!!!!

I woke up this AM with very mild back pain after a huge amount of activity yesterday--this is a first!

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