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Occipital Neuralgia Support Group
A community of patients, family members and friends dedicated to dealing with Occipital Neuralgia, together.
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11/13/2009 12:01 PM
wreck
Posts: 2
New Member

Hi everyone, I am new to this group but I think we have alot in common. I have been fighting with C2 neuralgia for the last 3 years and I am to the point that nerve blocks only give mild relief. My other problem is that the bones in my neck from C3 to C5 are so damaged I cannot find a doctor that is willing to operate for fear of paralyzing from the neck down. Living with this pain already cost me one marriage, she was good in the health part just not the sickness and my new girlfriend worries but she is a fighter like me. ( god love her )

I am glad to have found this site and to be able to talk with other people who know what I am going through, other people try but they just don't get it.

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11/13/2009 11:12 PM  Top
Trixi
Trixi
 
Posts: 653
Member

Hi wreck!

Definately understand your pain. My one advice would be keep going to doctors that specialize in spine surgery. Keep going til you find someone who can help you. All these doctors are SO different (even within the same field). So find someone who can help, sugically or otherwise. Don't give up - keep fighting. We are here for you too!

Welcome,

Trix


11/14/2009 03:12 PM  Top
brugette
brugette
 
Posts: 941
Senior Member

wreck, welcome to our family, but like we say, sorry you had to find us. This beast (as I call it) ruins our lives in so many ways, I'm glad you've found someone who will be in sickness and in health.

What kind of bone damage do you have in your neck at C3-5. Must be bad if docs are hesitant. Do you live near a big city with teaching hospitals? That's always a good place to find a spine specialist.

What kind of treatment have you gone through so far for the occipital neuralgia? Nerve blocks only give temporary relief, but we'll take what we get. Where di dyou have the nerve blocks, neck, head? Sorry, we're all curious what treatments others have gone through, hoping someone will give us info that could help someone else.

Welcome again and let us know if you have any questions. Patty

As the group leader I am happy to give you my opinion on issues, but please remember I not a medical profession, just another suferer of ON.

Some days it's not even worth chewing through the restrains.

Same Nightmare, Different Day

11/14/2009 03:21 PM  Top
suzack1
 
Posts: 154
Member

Hi Wreck, I have been out of town this week so I just saw your post. I have ON and Degenerative Disc Disease. I cannot even tell you how many Doctors, Specialists, neurologists and neurosurgeans I saw before I went back to my Orthapedic Spine Doc and he was willing to fuse my neck at 3-6. No one else would touch it. I knew the risk but he also saw I had no life at all without trying. It's not easy and only you can weigh the pros and cons. Of course I know being paralized is not an option I think there is always something new coming out. Keep searching and don't give up. Best of luck and keep in touch,

Susan


Previous discussions I participated in:
Pain....
Something to remember.....
New to forum

11/14/2009 03:44 PM  Top
wreck
Posts: 2
New Member

Hi Patty,

thank you for your reply and I will try to describe my neck bones the best the best I can. C4 overlaps C5 and crushes nerves + sticks out. C3 and C4 has a large gap.

C4 is also shifted out to the left while C3 is shifted out to the right which gets worst when I look up. So until the time comes I find a doctor to fix the bones I am advised not to look up. About the nerve block I get 4 needles across the base of the skull. I live in Halifax NS Canada and the doctor I am seeing is the best we got but all he is willing to do at this point are the nreve blocks, he says operations have to many risk. Easy to say when you don't have to live with the pain


11/14/2009 04:09 PM  Top
bmac
Posts: 305
Member
I'm an Advocate

Hi Wreck - Sorry you had to find us but you'll discover there are a lot of great caring people on this site. (great sense of humor as wellSmile

I have ON and a herniated disk (C7).

You wil receive a lot of good advice from those that share some of the same problem areas as you other than ON.

My prayers are with you. Do not give up and in spite of the pain, think positive and know that we care.

God bless.

BMac


11/15/2009 12:08 PM  Top
brugette
brugette
 
Posts: 941
Senior Member

wreck, your name says it all regarding your neck. I can understand the docs point of view, but more so I know where you're coming from, no life is not a good wy to live. I had C5-6 herniated and then replaced and fused a year later because my neck, upper back and left arm were in constant spams and I was using losing use of my left arm. Now I have DDD in my neck and C6-7 disc is starting to go. I also have bone spurs pushing on a nerve at T6-7 and a herniated disc going into the spinal cord at T9-10 and then L5-S1 (plus I think a few more down there) is herniated. Of course there's my fibro and best of all the ON/SON which I've had for almost 3 years now. Wow, time flies when you're having fun.

Since my surgery I can't look up or down. At stores I have to back up to see what on the upper and lower shelves.

Since DH (dear hubby) and I don't go out like we used to we decided to get a large screen TV and full cable package for entertainment. We put the TV at a perfect height so when I rest my hurting head and back on a chair the viewing is perfect. I found a bargain on-line on the TV so that was our Christmas two years ago. We've totally change our way of life because of this. It seems like once you adjust to one problem a few months later something new hits or gets worse.

Regarding the nerve blocks, I recently had facet injection (2 months ago) at C5 & C6 (they're both now pinched, as opposed to one pinched before surgery, my body loves to produce scar tissue) and my injections were verticle, but it seemed like there were 6-7 injection sites and it went pretty high up my neck which surprised me since we were working on 5 & 6. Who knows. But I haven't had any pain in my lower neck, but the neck to shoulder and down the left arm pain is back, so now we'll be doing a rhizotomy (nerve burn) because that's about my only option at this point.

Sorry to go on and on, we have a habit of doing this some days.

Hope we've been able to help you and I pray that you find some relief soon.

Patty

As the group leader I am happy to give you my opinion on issues, but please remember I not a medical profession, just another suferer of ON.

Some days it's not even worth chewing through the restrains.

Same Nightmare, Different Day
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