Nerve ablation

This is my second opinion Barb, maybe it's my third, I lost count. This is the best bet I'd say. I can postpone doing this for a few months, I think that's what I'll do

Thanks Sheila, I think I might have lost the thread here, so nice that many people have replied. The key thing for me in what you say is nerve damage over a large area. Up until I read this I had thought of it only at a specific point, the main nerve (for me, right lower occipital nerve) but it  could be all over the right side of the head to a greater or lesser extent. So yes, I shall do my homework on this and let you know.

Ron, it is imperative that you understand exactly what the condition is so that you can help manage it yourself. Without an understanding of the condition it is difficult to communicate to the doctor. I've always believed in "patient heal thyself". There are many sites that go into detail about nerve damage (with illustrations) and what it encompasses. I think if you can visualize the area, knowing what it looks like will help you control the pain.

This I finally went to bed at 10 am after getting What I call lightning bolts

on my r/s neck when I lay down.   Some days are good some bad.  This week I'm getting my 3rd set of shots as this dr goes about doing it a different way.  He told me not to expect help the first time.

I have the Nervo stimulator implanted in me approx. 5 months, I'm not any relief from it.

This is going on 3 years, but the pain in the neck since I had the machine place inside of me.  The Dr. who implanted it didnt tell me about all the side effects, which I think the pain got worse.   Be careful if you get an implant, make sure the surgeon is well experienced.

On my 4th pain doctor he's rated top 3 in NYC so i'm hoping.

I know it wont go away completly but I need to sleep.

I send out my prays to all of you who are suffering

Paul

PS Excuse my typing, it's very poor

No worries about the typing, and sorry to hear it's getting you down Paul, particularly the Nervo stimulator. I know what you mean about lightning bolts - it's a good way of putting it. I was calling it stabs with a long knife. Some days good some days bad, there's a wisdom about all this, I just can't find words for it... anyway I'm going to see the ablation lady tomorrow and I want to tell her no thank you not right now at least.

Thanks Michael, so if you've had PHN 5 years now, do you notice the pain is not as bad as it was at the beginning? Another point I get from what you're saying, they offer nerve ablation if they know what to aim for. And this means if they got the nerve blocks to work to some extent? If that's it I imagine the neurologist told the ablation lady that the blocks were successful and they were, for a week or two. So maybe that's why what I'm getting about the ablation is all good news. They are keen to try it if it looks like it'll be successful - maybe somebody wil write a paper about it and get it published etc. So maybe I should try it...

Well to your first question. My pain is controlled by 1800 mg of Gabapentine a day (six hundred spaced out 3 times a day). I take Nortriptaline 50mg one around bed time, to help me sleep. Also, I use a lidocane patch,  5mg on my left side, average about 1 per day, I also use lidocane cream 4mg if I feel the patch is not needed (but usually is). So Ron, I kinow the pain is at least controlled but I know it exist, because I know when I forget a dose of gabapentine, It begins again.  I tried the nerve block 3 times,  hoping they just missed the nerve responsable. Twice by the VA and once by a private pain management doctor. They all did it using a long needle adjacent at where my pain is most intense. So, laying on my stomach,  as the procedure takes place, the staff assists the doctor with images in order to avoid puncturing a lung. Time after time, you wait to recover. But realize the pain is the same. That was my experience. I'm not a doctor. I have been told nerve ablation can work if the spot has been identified, otherwise, the injection is like looking for "a needle in a haystack" of nerves. I was going to do an ablation, but decided against it, after being told not to do it based on research. Plus Ron, I have MS which causes nerve damge anyway. This pain I feel, however, is from the shingles.  PHN is a hidden disabiltiy until you end up screaming in pain or frustration! MS causes my coordination to go nuts among other central nervous system abnormalities. Anyway, hope things work out for you. 

Paul, both my Orthopedic doctor and my pain management doctor tried to get me to try that stimulator. I had already had the morphine pump surgically implanted which was disastrous so I advised them that I would never consider any further invasive treatments. It appears that my instinct on the stimulator is correct. I'm sorry that you are not getting the results that you desired. I am going to pass that information onto my doctor when he tries to push it on me again. We all know it's a way for them to make additional money.

Shelia

Yesterday I One shot in which the dractually went up my spine (10 ),

the last shot he almost had to scrap me off the celling.  He said we hit paydirt that's the worst vein, as the same time h he increased Vicodin,

took one pill and replaced with another one.

My biggest problem right now is sleeping.  The night pain is like I'm receiving electric shock therapy ( r/s neck, shoulder).

It will take up to 5, 6 days to actually see if this therapy worked.

July will get this machine removed.

I pray some dr or medical company will come along with a cure.

The gov't is makig it harder and harder for us suffers.

God Bless  everyone who suffers with us

Paul,

Ouch!!! I'm SO SORRY for what you went through at the doctor's, as well as everything else you've been through with PHN. 

As for sleeping at night...when I had my worst shingles pain, my doctor gave me 25 mg of Nortriptyline at bedtime. She told me that it is a great sleep aide, and she was right. My pain was on my left shoulder blade area, left underarm, left breast, left arm. There was NO position in which I could lie down and not make the pain worse. One night, I was so exhausted from not sleeping for days that I just broke down and cried because I wanted to sleep but couldn't as the pain was so bad. The Nortriptyline actually overrided the pain and put me to sleep. It is actually a beta blocker and I'd taken it before for my migraines. I had read online that it is used for shingles pain, so I asked my doctor about it. It was just what I needed. 

Hope this helps.

God Bless,

Gail

my dr just gave me that pill, I went to bed 2am woke up 10

that was an improvement.  I also have a sleeping pill and

spasms but aids in sleeping.

I hope some day down the road I can off of some of these meds.

They weened me off of Fentanyl & Tramadol.

This is my 4th pain dr in 3 years

Paul

My heart goes out to you and everyone on this forum. Fortunately, my shingles pain got better rather quickly after my doctor gave me lots of steroid shots (Kenalog) in the areas of worst pain. I was only down with severe pain for a few months. I still have a few numb areas, and occasional itching under my arm, but it's really nothing to be concerned about. 

In the back of my mind, though, I fear it could come back. My doctor says no, but after being on this forum I know people have gotten it more than once. 

I can't even imagine how hard it must be to have PHN for years. 

Hang in there, Paul.

Gail

 

Thank you Gail

Yesterday I went CVS got the shingles shot

Paul

Paul, you have no idea how much I sympathize with you. Sleeping had been a big problem for me as well but I bought an adjustable bed, much like a hospital bed, but also has a massage feature. I sleep sitting up because I cannot stand to lay in any one position. This has helped me with pain from pressure. Although there are nights where it is difficult to fall asleep the meds have helped. Now that I'm titrating down I go from extreme exhaustion to sleep then periods of being wide-awake. After discovering the pain meds were actually causing a rebound pain in other areas the decision was made to attempt an all natural approach. If you will read all the posts in this forum you may be able to determine the best options for you. I have tried nearly everything with a few exceptions over the course of nearly 8 years. Never give up hope. Please update us on your progress. God bless. 🙏🏼

Thank you  Gail

You can get another outbreak of shingles.

I have read stories about people getting yearly

outbreaks

Paul

Hi Michael, and everyone, sorry it's been so long I've just been getting along with this new meds the doc gave me: gabapentin 600mg that makes you sleepy and another one I take in the morning Cymbalata 30mg. Also new is this procedure I haven't tried that's not nerve ablation but  Pulsed RadiofFequency For Chronic Pain (google that). Same as ablation but it doesn't damage the nerve. Not a permanent fix, you have to have it done every few months

Hi Paul, can you please share the name of the doctor in NY and if nerve blocks helped? Thank you

Hi,can i ask where abouts do they do the PRF?. My wife is interested in taking her Father for treatment in Thailand, and she is just trying to find out more about this treatment. Thanks

Hi Bernie

You know I'm in Thailand? The PRF procedure is done as part of the Pain Management Clinic at Ramathibodhi Hospital. Your wife can call the main number and get connected from there

Hope that's helpful

R

Hi Paul and Everyone

can I ask who yr. doc is 

I am in NYC too

i go to a great guy at Mt Sinai, Dr. Charles Stacy.

i

he Is a neurologist.

i am going to ask him about the ablation.

i have it in my head too i suffer 24 / 7.

i have not dated in 7 years i am in so much pain.

i hsve a feeling that the outcomes are uncertain and inconclusive 

i would be scared to have my head messed up .