Article on Nerve Decompression Surgery

I just added this link to the side bar, Useful Links.

Please check out this article, as it explains the surgeries that Olivia has had.

1st Surgery – Decompression of Occipital Area (Decompression of GON, Excision of LON) – June 2013
Performed by Dr. Ducic
Pain free for 3 full months then pain returned in GON area. LON still pain free.

2nd Surgery – Excision of Temple Nerves – October 2013
Performed by Dr. Ducic
Still Pain free in temple area

3rd Surgery – Attempt to re-do decompression of GON – December 2013
Performed by Dr. Guyuron
Not successful. Still has high pain level at GON site

4th Surgery – Decompression of Frontal Nerves (Supraorbital / Supratrochlear) and Repair of Deviated Septum / Stem Cell injection into GON – January 2014
Performed by Dr. Guyuron
Frontal Area may be successful, still early to tell. Still has numbness
She feels the stem cells will not help her as she still has very high pain level there, level 10
We still feel we will have to pursue excision of GON once she heals and as some time off from surgeries

This is a very good article, however, and I would urge anyone that has this debilitating condition to find out more about it. It’s not for everyone. Olivia was a case that did not respond to medication, she responded only to nerve blocks, and her pain was constant. In our case, it made sense, and was the only answer.


Jan 26th, 2 weeks post-op from frontal decompression / stem cell injection

Olivia’s surgery on 1/13 was decompression of frontal area, and repair of deviated septum. She also had stem cell injections into the occipital area to see if that would help the pain there where the decompression was not working. We’ve had a rough couple of weeks.
I’ve heard great things about the stem cell injections. I’ve talked to people that have had it done, with success. I’ve read nothing but good things about it. They take fat cells from your stomach area, go through a process that is over my head to get the stem cells to inject into the area where there is still pain. This was a last ditch effort to see if anything would help the pain in the back of her head before we cut the GON (Greater Occipital Nerve) Have not wanted to jump into that because she would have a numb head for many years, if not forever. Probably forever, and she’s only 14. One woman I spoke with has a teenage daughter that had it done and she is glad she did it. She has her life back, she’s participating in activities, the numbness doesn’t even bother her. There are things to consider though, like having to be careful when blow drying your hair because you could burn your head and not know it. Obviously nothing to be taken lightly. So, we tried the stem cell procedure first. It couldn’t hurt and if it helped, we could postpone looking into severing the nerve.
This caused her to have pain in her stomach area, (the donor site) so bad that she couldn’t get out of bed to walk to the bathroom for a week after surgery. I am pretty sure that this is not normal, and for some reason it just hurt her stomach much worse that it should. This brought on a whole new set of problems with her colon that we have had 3 trips to ER for. She had to have a procedure done under anesthesia to de-impact her colon and spend 2 days in the hospital. The doctor that did that procedure said that sometimes that lipo procedure that they use to suction out the fat cells can cause the bowels to freeze up. This was really awful pain for her. We are focusing on trying to get her bowels healthy again, lots of water, mirilax, juicing fresh fruit daily, taking a Rx peri-colace, eating nothing but healthy greens and a high fiber diet, everything we can do to help her stomach and digestive system. She is still in a lot of pain, I think it will take a little time for her system to recover and get regular again, but by consistently doing all the right things, I don’t know how it cannot get better. It has to.
It has not helped her head pain yet, but it can take up to 3 months.
She has been through so much in such a short period of time, she needs a few months to recover, and get the rest of her body as healthy as possible. It’s hard when she can’t do too much because her head is throbbing. But we have to try to get her systems healthy and let her heal, and see where her pain lands, what the pain level is and if we must cut the nerve then that’s what we’ll have to do. Gonna rest and try to heal for now. Poor baby has been through so much.

It’s too soon to tell if the frontal surgery will be successful, but so far she still feels numbness in her eyes (better than feeling like knives are sticking in them) and numb / soreness in the forehead area. This is normal, once the numbness wears off she can tell if the pain will be better. She needs some time to heal, and then we’ll know for sure.

It’s that darn occipital area that is so painful, that’s what hurts her the most, it’s debilitating. Even if the frontal surgery helps that area, she won’t get her life back until she gets relief there because it’s the most intense, level 10 24/7, and covers most of her head. This is why she’s so upset, it’s been depressing to have 2 attempts at decompression, and they didn’t work. Well it worked the first time, but it didn’t last.

Trying to keep her positive, it’s getting more and more difficult for her. She can’t give up. She’s had success, she’s had pain relief, she can have it again.

Jan 13th Surgery – Frontal Decompression

Olivia had her 4th surgery on Monday, Jan 13th. As I stated in the last post, it is getting confusing for some to keep track of them all. This was to address the pain in her eyes, and eyebrow / forehead area. This area had not yet been addressed, and we knew we would have to have it as it is a separate set of nerves. I plan to post a pic on the Pictures tab, so look there for diagram of these nerves. She also had minor sinus surgery. This is a migraine trigger point, and it can cause pain behind the eyes. She had pain that felt like knives sticking in her eyes 24/7. The two together should bring her relief in that area.

She is doing fine, recovering in the hotel room now. We head home tomorrow – on her 14th Birthday! Poor baby, having to recover from surgery on her Birthday, I will make it up to her for sure.
We hope that this surgery will stop the pain in her eyes, and forehead. That area is numb right now, as it always is after the surgeries. When you mess with the nerves there, they feel numb for a couple of weeks or so and it’s hard to tell what the results of the surgery will be until that numbness wears off.

She also had stem cell injections into the back of her head, in the Occipital area where she had her 12/2 surgery. Dr. Guyuron has had success with a lot of people with this. For those that still have pain at the surgery site, or returning pain where they had surgery, he can inject healthy stem cells into the area and it will often help to ward off returning pain. We are not sure if this will work or not. It seems that the attempt to re-do decompression in the GON (Greater Occipital Nerve) site was not successful because of her pain level that she still has there, but the stem cell injection was one last effort to try to help that before we consider excision of the GON. Excision of the GON would be a last resort, because that is a big nerve and we haven’t wanted to cut it unless we have to. I have talked with people that have excised that nerve, and they would take the numbness over pain any day, so we may have to go that route. She is pain free where she had excision before, at the site of LON (Lesser Occipital Nerve), and the Temple area.

For now, we are anxious to let her heal and see what the results of the frontal decompression will be. We will also be waiting to see if her GON site gets any better. If not, that will be the last surgery she should need, to excise the GON. Wishing we didn’t have to do that, but will wait to see.

Looking forward to the day when she can say she does not have a throbbing headache, and she can get back to school! She really misses her friends, and being at school.

It’s been a long road, a long process, but we still feel we are on the right track. Nothing else has worked, but this, so thank goodness that we had something to turn to that gives her pain relief.

Wishing her a happy birthday tomorrow, and looking forward to better days ahead!

This frontal decompression was not too bad, her eyes look really good. The incisions look really good, you will not even be able to see them when they heal. Fine lines right in the crease of the eyelid. That’s how the Dr. gets to the supraorbital nerve, and also the supratrochlear nerve.