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tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 6/21/2012 9:27 PM (GMT -6)   
Many new members don't know my story so i will give a very brief insite. I have been suffering with intractable headaches for more than twelve years now. I have tried every class of medications, every narcotic and more, done so many different forms of treatment and seen several several specialists and nothing to this day has helped me. My only vice is keeping ice packs on my head.
This past week I went to Quebec City to see a doctor regarding occipital nerve stimulator surgery and the dr. says i am a candidate. So we have started the process for evaluation. I am beyond excited and still can't believe i have a chance at having lower pain levels. My headaches are continuous, never gone, and a pain level of 7-8 with spikes of 9 and 10. So any reduction would be welcomed.
 
Just had to share some joy, something i haven't had in a very long time.
 
Suzane

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/21/2012 9:36 PM (GMT -6)   
yeah yeah yeah Yepper!….this is news that is long overdue! Many of us have known Suzane for a very long time, and have actually met her in person a couple of years ago, and we are thrilled for her. She is one of the few,... if the only one I have known,... that no med works in giving her some relief for her pain. She has suffered for a very long time.

Just the thought that this may work, is beyond comprehension to me!

As I have said before Suzane….I have all my fingers and toes crossed for you! turn

Love you much!

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 6/22/2012 2:02 AM (GMT -6)   
Oh, Suzane, I am so happy for you. That is such exciting news.

Hugs,

Flower

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/22/2012 4:45 AM (GMT -6)   
👍👍 Great news Suzane. Very happy for you my friend 👍👍

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

alsoinpain
Regular Member


Date Joined Jun 2012
Total Posts : 353
   Posted 6/22/2012 6:03 AM (GMT -6)   
That is awesome news, i can't imagine how bad it must feel to have a never-ending headache. Prayers and well wishes to you that this helps.
My DX: fairly advanced, moderate to severe degenerative disk disease at L3-L4 , L4-L5 with endplate sclerosis and osteophyte formation and moderate facet osteoarthropathy. There is a transitional left lumbosacral segment with articulation of the transitional segment and the sacrum, also known as Bertolotti syndrome. There are degenerative changes at C5-C6 with disk space narrowing and spurring.

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 6/22/2012 7:15 AM (GMT -6)   
turn  YEAH Suzanne!!!  I've thought about you so many times over the years and prayed for some relief for you.  I'm so happy you have found something that may help!! Please keep us updated!  I don't post that much anymore, but I do check in on our members pretty often. turn

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/22/2012 8:28 AM (GMT -6)   
Suzane...I'm so happy to hear from you and this update!!

I will be praying hard that this can offer you some relief...You really are a trooper and have gone through so much.

Sending you some hugs (( ))
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

justanotherday
Regular Member


Date Joined Mar 2011
Total Posts : 179
   Posted 6/22/2012 10:48 AM (GMT -6)   
Suzanne,

I'm so excited for you.

I was approved for occipital neuromodulation but am a big chicken. lol

I haven't been dealing with the headaches as long as you, but more than a day or two seems like a lifetime some days.

I'm crossing my fingers that it helps. Maybe it'll give me the motivation to actually follow through with having mine done.

Tina

rocckyd
Veteran Member


Date Joined May 2012
Total Posts : 1114
   Posted 6/22/2012 12:45 PM (GMT -6)   
Such awesome news. I truely know how you feel. The bilateral TMJ replacements were for function, not pain. Dr. made it clear that the pain could be worse, and he was correct. I've had drs ask me what it feels like and I tell them it's like a sinus infection, migraine, ear infection, and a concussion all at once. I've had drs mention the stimulator to me. Please let me know how it goes.
35yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, GJ tube

Darnme2000
Regular Member


Date Joined Feb 2012
Total Posts : 88
   Posted 6/22/2012 1:21 PM (GMT -6)   
Suzane, So happy for you my friend. Hoping so badly that this works great for you. I always hate to see you hurting so much with little to no relief.

D.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 6/22/2012 4:39 PM (GMT -6)   
Suzane we had a young woman in college that had one of these implants, I think it might have been the same or similar, look up Skeye, back in 2010 She was having really bad pain I think behind her eye, and nothing worked and she ended up getting this implant as I remember it didn't take a hundred per cent of the pain away but reduced it quite allot. You might remember her, she was accepted and went on to Vet school. Anyway I think it is great news, and I hope this works out well for you!

White Beard

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 6/22/2012 5:38 PM (GMT -6)   
Yay for you Suzane!!! I hope this helps you have a better life :)
Chronic pain, Depression, Fibromyalgia, Tennis Elbow (both arms), Arthritis (knees and fingers), Diabetes. Ruptured disk L-4, Severe degenerative damage L5-S1, ACDF C5-C6

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/23/2012 12:07 AM (GMT -6)   
Suzane,

I think you already know how I feel... but just wanted to say it here too... praying this is the miracle that we've all wanted for so long for you. Any relief for you would be such a HUGE blessing. I'm so glad that you got positive news.

Hugs, my friend. --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

Mealmaker
Regular Member


Date Joined Jan 2012
Total Posts : 78
   Posted 6/23/2012 6:02 AM (GMT -6)   
Fantastic news for you Suzanne. I wish you all the very best and pray that this new treatment works for you and you get the relief you so desperately need.

Blessings to you :)
Dx Fibromyalgia, CF, Severe TMJ, Osteopenia of lower spine, arthritis of L hip, bursitis of L shoulder and hip, GERD, Perimenopause and query RA. Deleting Dairy and sugar out of my diet was what set me on the road to recovery.

"Behold the turtle who never makes progress unless he sticks his neck out" Unknown

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/23/2012 3:47 PM (GMT -6)   
Suzane I know I've already told you, but just had to say it again. This is terrific news. I hope and pray and everything else that this gives you the relief that you deserve. You've gone through so much. You deserve it.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 6/24/2012 5:22 PM (GMT -6)   
Thanks everyone for all the support. I will keep you updated as to how everything is progressing.

It certainly feels great to finally have some hope.

Suzane

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/24/2012 5:40 PM (GMT -6)   
that is quite a story, i am one who never even experiences regular headaches. i can't hardly imagine the suffering that you have endured. i hope and pray this surgery will give you the relief you so richly deserve.

my best to you

david in s.c.
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 6/24/2012 6:08 PM (GMT -6)   
thank you david
and nice hearing from you as i've been wondering you were doing
just mentioned you to petey the other day

suzane

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/24/2012 10:06 PM (GMT -6)   
thanks suzane,

i spend most of my time at HW in the Prostate Cancer community of course, and I am nearing the 15,00th post mark, hard to believe, lol. But we get newly diagnosed men every single week, and I can't find it in me to turn my back on all the new men, or their wives, that come to us shocked and awed with a new cancer diagnosis. Most come very afraid, until they have a chance to learn more about that type of cancer.

i need to spend more time here to be honest. my cancer is no longer remotely curable. i have a great oncologist, who's main goal right now, is to keep me out of as much pain as possible. my CP is officialy diagnosed as cancer pain, which can include pain caused by cancer treatments, as is the case with me.

i have great communications with the doctor and his nurse, and when i am not seeing him for regular visits, we have a constant trail of e-mails, regular letters, and phone calls. he's always ready to adjust my pain meds on an instant, i know i have one of those rare, caring, and very communcative type of doctors.. wouldn't consider switching away from him.

there's little that can be done for the rate of progresion for the cancer at this point, but so glad he understands fully, what it is for a patient to live with serious CP. He is a pain specialist as well.

i just keep on keeping on, attempting to enjoy what time i have left with my wife and family.

david
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 6/24/2012 10:39 PM (GMT -6)   
Suzane,
 
Please know that I am praying for you and for upcoming SUCCESS with reducing your headache misery.
 
Lindaloo
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda
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