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10/13/2010 09:21 PM

if the nerve block doesnt work, does it mean......

xutka
 
Posts: 60
Member

if the nerve block doesnt work does it mean, I dont have occipital neuralgia?

and if they work, then what's the next step to find permanent relief?

I am new and I wrote a very long message about my possible occipital neuralgia, I clicked on send button and the message dissapeared!

now I need to write my introduction all over again with my history

I will do it in a bit.

thank you for your answers in advanced!

I am in a dark tunnel and need some guidance as I am ignorant on this subject!

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10/14/2010 07:13 AM
bmac
Posts: 307
Member
I'm an Advocate

Hi - I was diagnosed with ON and the nerve block did not work for me. After a lot of research, pills, etc. the thing that is helping me is working with a Neuromuscular Therapist. I would try this first.

Unless absolutely necessary, I personally would not take a lot of meds. You will find on our support line that different things work for different people. You must make the final decision on what is best for you.

Please know that you are not alone and we have a lot of wonderful people on this support line. try to stay positive and know that you will have some good days and some that are not so good. Try not to be angry or go into a shell. A PMA is always a good thing

My prayers are with you.

God bless.

BMac


10/14/2010 01:56 PM
Arlet
ArletPosts: 165
Member

From what I understand, if the nerve blocks help or make things worse, then ON is the likely culprit. If there is no change at all after the nerve blocks, then it's less likely to be ON.

10/14/2010 04:19 PM
brugette
brugette  
Posts: 941
Senior Member

When my ON was just starting the nerve blocks didn't work, didn't cause more pain, zilch, nothing. Now, 3 years later, I feel if I did them now, I would have a different outcome.

I'm sorry to hear that your intro was deleted. I've had this happen to me on posts and it can be frustrating to have to re-type all that with our pain. Take your time and we look forward to learning more about you. Welcome to our family and take care of yourself.

Patty

Post edited by: brugette, at: 10/14/2010 04:32 PM


10/14/2010 07:53 PM
cmiller
cmiller  
Posts: 863
Member
I'm an Advocate

Lets see if this post disappears like the last one. I posted a long reply to you Xukta and it seemed to disappear also.

Welcome and stay a while. Hopefully you will be able to get a lot of good info here. I really can't say that I have seen too many posts on here where the blocks work well. Some people like me got a small relief, in my case for only 10 days and it wasn't worth the pain. From all the posts you will see that we all suffer a different degree of pain and most of us have tried many different procedures. Most of us have had times of pure desperation, frustration anger etc and find this forum a great place to vent as here you will find understanding.

I have had ON for a little over 2 years and once started it became severe very fast. I tried a chiro, myofascial physio, normal physio, deep tissue massage and nerve blocks. I came here because I was prescribed opiates, anti-seizure meds and strong muscle relaxers and my husband had a fear of addiction etc. One of our leaders offered me advice that I will never forget and I would like to share that. She told me to remember that the difference is that we are DEPENDENT on the meds to help control our pain as opposed to addicted, taking the meds as a way of not dealing with life issues, or something to that sort. My husband accepted that and I can tell you that I truly would not be here today if it weren't for those meds and I would take them again if it started again today. In my case the medication helped my severe spasms change from hundreds a day to about 20 on average.

Luckily, on Sept 27th 2010 I had neurosurgery for this condition and so far it looks very promising as a cure. I was told that after the nerve surgery the nerves will be very painful as they heal and that is true. During the surgery my surgeon found that I had a genetic abnormality where an artery had split my greater occipital nerve, lesser occipital nerve and another branch. When this ON started the artery grew and twisted and tangled up those three nerves into a mass looking like a flower pulled tight in the center. No therapy other than surgery would have really helped my condition.

Good luck on your journey. I hope you find comfort here, knowing that we are all suffering and understand a little of what you are going through.

Chloe


10/14/2010 08:44 PM
brugette
brugette  
Posts: 941
Senior Member

Well put Chloe, we are all different and have to respect each persons issues. What works for one doesn't always work for others and when one person finds something that works for them they should share it but not push it.

I look forward to the day when I am not dependent on my pain meds as much as I am today. Because of all my spinal issues I may have to take some amount of pain/sleep meds to survive. When I first starting researching ON and found in the first article I read that he mentioned this is called the "suicide disease" I didn't understand, but as the years of pain have continued I understand what he meant.

You have been so supportive of everyone's individuality and support them in they journey for relief of any kind. My heart was filled with joy when your first post came in after the surgery, then the next about how well you were doing. I know I was against fusing your neck, it turned out to be the right thing for you and I learned that what didn't work for me isn't true for anyone else.

Take care of yourself and if this post disappears PM me and I let Roy know in case there is a problem with the site.

Gentle hugs,

Patty


10/15/2010 10:22 AM
cmiller
cmiller  
Posts: 863
Member
I'm an Advocate

Arlet I was told that also... if it made it worse or better even a little then it seemed like ON. I kind of worry about this way to diagnose ON becaues when I cross over to Andrea's posts and her nurse friends great explanations about how ON CAN be a symptom of something else it makes me wonder how many people are being Dx.d with ON instead of ON symptoms. For example she is having shoulder spine pains and her problems could lay there, but at times it irritates the ON area... does she have ON or ON symptoms. I think that is probably the first thing sufferers need to work out and it's one of the hardest.

That is why doctors were telling me to stabilize my ruptured disc and see what is left with the pain because the disc was the very next one to the C2 disc remembering that ON is also called C2 neuralgia and occasionally Arnolds Neuralgia.

I learned so much from my spine surgeon when he told me that a bulge/rupture etc of discs high up in the neck can cause some strange crazy pains over the head.

Patty, I too found research dubbing this the suicide disease...and only god and me know how often I was close to suicide in the last two years. Can you imagine having this 20 years ago. Most doctors would have thought we should be funny farm patients...ON causes pains where pains shouldn't be according to anatomy books and we now know that often people with ON are suffering from twisted and compressed nerves that are not where they should be lol. I think I can say now to any newcomers that there is hope and a cure is possible. As Snelko/sandy who has had the surgery says... she still has bad days if she over does it. I will take that still as a success because it is like if you almost had your leg amputated but they saved it ... a success for sure... even if after you get some days where your leg hurts like heck. No more suicide for this disease. yay!

This forum is so valuable for ON Sufferers because getting help for this condition is not easy.

I hope everyone has a pain free weekend.

Rambling Chloe


10/15/2010 05:18 PM
xutka
 
Posts: 60
Member

oh thank you for your support everyone, I am really happy I found this group and finally I get to share info with you regarding treatments etc.

I am happy to be here!


10/16/2010 07:46 AM
brugette
brugette  
Posts: 941
Senior Member

We're glad that you found us, we are one big (physically) dysfunctional family and welcome you into the group. It is a nice group of people, always willing to help each other, support each other and laugh or cry with each other.

Hugs,

Patty


02/10/2011 09:15 PM
bobswifeamy
bobswifeamy  
Posts: 181
Member

After attending this seminar, I decided to switch to these Drs. The first presenter is Dr Maureen Moriarty. She and Dr Ducic are an inter-disciplinary team who have helped many people. The second presenter is Dr. Ducic. Even their .ppt slides are included, so it's all the info you would get if you were there in person.

http://www.georgetownuniversityhospital.org/LectureSeries/? lecture=What_causes_migraine

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