7 Months Post-Op

It’s easy to update when you have good news, it’s difficult when it’s not all good. Olivia has been struggling managing her pain. She was better, about down to a 4 or 5 after the surgery. Going down from a 10 that’s considered successful. There were days it was lower, and some higher, but she was probably averaging that for awhile. She could see her friends and do things but traditional school was too much. It’s a shame because she’s missing out on her freshman year in high school, and we were hoping the surgeries would get her back to school. Any day in the classroom made it shoot back up to anywhere between 8-10. She completed some credits online, but for the first time since this started in 7th grade, she is falling behind. Hoping to make it up next year with an alternative program.

Anyway, about 3 weeks ago she started feeling really bad pain again, back up to a 8 to 10, and on the level 10 days it was a 10+. We went to the ER this past Wed night, but they are usually at a loss because the entire regimen they have to go through for migraine is ineffective. She has Occipital Neuralgia, and the migraine meds do nothing for her.

I think that the surgeries were helpful in giving her a big reprieve from the pain, but it is an ongoing process. You cannot go into this expecting to be cured and be done with managing pain. I think the lucky few can do that, but I’m sure it’s not typical. This has been a lot for a 13 year old girl to deal with. If I could give any advice it would be to definitely seek some emotional support especially for a child, even if they don’t want it. She’s been very strong throughout all of this, but it’s taking it’s toll. She has an appointment with neuropsychologist coming up, I’m hoping he can help her manage the emotions that go along with chronic pain, I believe that is his specialty. It’s not fair, it can make one angry at the world when something like this happens. This monster has stolen her life away at such a young age, what could be an exciting time of life…it’s very difficult to deal with. For her and I both. I wish I had more time to devote to making her life better. She spends a lot of time alone. A support group of some sort is so important. There are several online groups that are a great way to learn about treatments, medications, and even make some friends and be reminded that you are not alone.

Additionally, make sure that you do have a good doctor at home either in pain management, a neurologist, or someone to help manage medications in addition to the surgery. Dr. Ducic always stressed that importance, and it is very true. If you wait until the pain is unbearable, it takes weeks to get into a good neuro. We do work with a really good pain clinic in our home town and they are good about getting her in pretty quickly. I’m getting her an appt there while we wait for the neuro appt. The pain clinic can give nerve blocks but they only last 2-3 days, and usually when the pain returns it comes back even worse for awhile so she really doesn’t want nerve blocks. We tried in the past to get Botox, but she could never be approved by my insurance because she was, and still is, under 16. I’m wondering if it would help her. I should probably start that paperwork to get approval and maybe we’d have it by the time she was 16…(8 months from now!) Maybe the neurologist can suggest a new medication, there may be something she hasn’t tried yet. Although she’s tried more than I can remember. In many cases, however, medications can work better after the surgery so it may be worth trying again.

Also considering seeing a neurosurgeon, and/or asking for a FIESTA MRI, a detailed MRI that show the pathologies of the cranial nerves. It’s obviously a nerve issue, she gets pain relief only from a nerve block, and the surgeries helped but didn’t last, so maybe there’s an issue with the nerves deeper down than what can be accessed peripherally. I don’t know but I’ll keep asking questions, and searching for an answer. There has to be something out there that will help her.

So, we still have some steps to follow, appointments to keep, and more research to do. In the meantime, We’ll be at least searching for something to bring some immediate pain relief as I’m hoping that she can enjoy some of the summer time. She is supposed to take drivers ed this summer…if you live in my town, please be on the look out :)

If anyone out there knows of any good headache clinics, especially in the Indiana = Michigan or mid-west area, please message me. Keep the faith and hoping you all have pain free days :)

Oct 27th Surgery with Dr. Peled – Success!

Olivia just had what we plan to be her LAST surgery! We traveled back to San Fransisco to have Dr. Peled re-do her temple excision, and also re-do excision of her Lesser Occipital Nerve, (LON). The excision surgery that he did on her Greater Occipital Nerve, (GON) was six months ago in April of 2014, and she is still pain free there. We decided to go back to Dr. Peled for the temples and LON because her pain there had returned and was so bad it was keeping her out of school, and still controlling her life. It was back to a level 8 to 10 24/7, and had to be re-addressed.

She had the surgery on Monday, 10/27. Today is only 5 days later but she is recovering very nicely. Just like the last one with Dr. Peled, she recovered better than from any other. She quit taking her pain meds after only 2 days. She has 6 incisions in her head this time, 2 in the back for the bilateral LON, and 2 on each side of the temples to get the nerve straight up from the ear in temple area, and the incision closer to the hairline gets to the nerve closer to the eye / cheek area, but still part of the trigeminal branch. (I’ll have to double check the exact names of the nerves and update once I confirm, can’t think of it at the moment) The pain from the surgery is very little, and the best part is – she has NO headache pain!! She said “I can’t feel any throbbing, I haven’t felt no throbbing head pain for 2 years!”.

She has NO pain in the back of her head, her temples or eye area…this is a first. With each surgery, she experienced pain relief in the area targeted, but still had pain in other areas. Then unfortunately, with the GON, LON and temple area – the relief from her first surgeries there did not last. We are feeling confident that these last two surgeries with Dr. Peled will bring permanent relief. Time will tell, but feeling good about it. I’ll have to update again every 6 months to let you all know, but feeling very optimistic at the moment.

She is already planning her return to school, and is very excited about that. She will need to rest, and take it easy for at least 4-6 weeks, but we are hoping that she can return to school by December. She would not be able to carry her books and all the weight until that time anyway, but she feels so good it’ll be hard to keep her down. She is smiling, and happy like a normal 14 year old girl ought to be.

Big shout out to the staff at the Argonaut Hotel – our second stay with them during the trips to San Fransisco for her surgeries. They are simply wonderful. Went out of their way to make us feel comfortable, and be kind and considerate to Olivia during her stay. They even got her a card, and cookies, complimentary movies and anything her heart desired :) What a great city San Fransisco is, they have great hotels, great food, they WON the World Series while we were there (that was AWESOME!) – and BEST of all – they have a GREAT surgeon – Thanks Dr. Peled!!!!

3 weeks post op from Occipital Excision with Dr. Peled

I’m late in updating after Olivia’s last surgery. People are wanting to know how she’s doing since she had occipital excision with Dr. Ziv Peled on 4/28. 3 weeks post op now, and she’s doing great. She recovered better from this one than any other. No problems with nausea (we have learned that the Rx Emend helps tremendously! If you have trouble with nausea during or after surgery, take this one pill a few hrs before surgery, no nausea at all!) Also no problems with asthma this time, very happy about that. Her head is numb and she’s loving it. (she still has temple pain, as that returned 6 months after excision there, if this Occipital pain relief lasts, then perhaps we will go back to this surgeon to re-address her temple area) We both feel very good about this surgery, and the surgeon. (http://peledmigrainesurgery.com/, I’ll add a link to the right) She immediately had significant pain relief. In the area targeted, (basically her whole head except for the temple area) it’s a level 9 or 10 down to 0, because it’s numb, and she’s happy about that. Just hoping that it lasts. I’ll feel better when we pass the 6 month mark and she’s still pain free. For now, she has times where she can hang out w/her friends, go to the movies and sleepovers. Still working on school work from home, but hoping she can start 9th grade in the fall.

We very much liked Dr. Peled. We like the fact that he does nerve blocks right there in his office, he was available for questions anytime leading up the surgery, he called us afterwards and we have a phone appt scheduled for next week. I also like the fact that he took his time during surgery, it didn’t seem like he was rushed or had anything else on his mind other than my daughter, I’ve had different feelings from others at times.

We had a great trip. It was extra nice that I have family out there in CA and they were so helpful to us getting around and back to the airport after surgery. I hope we can go back sometime and visit with family.

Enjoying the pain relief now. Pretty nice to go from level 10 to 0! Thanks Dr. Peled

Benefit, Concert for a Cause, February 15th, 2014

We might get some visitors to the blog, due to the attendance of the upcoming Benefit on 2/15. If you come to support my daughter, I cannot thank you enough! If I can ever do anything in return to show the same kindness to all of the people that have come forward to help us, I will in a heartbeat.

I must say that the benefit could not have come at a better time. As you know, Olivia has just had her 4th surgery, and she will need one more to be pain free. We have tried everything possible to avoid excising the GON (Greater Occipital Nerve), but it seems that is what we are going to have to do. Her constant 24/7, Level 10 pain just will not stop and it seems this will be our only option.

I have found out that my insurance will NOT cover her next surgery. So I want to thank everyone, from the bottom of my heart, for making it possible for us to seek the relief that Olivia desperately needs.

Excising the GON has been the one that she needs the most, but we’ve just been leery to do it because she will have numbness in her head, probably forever. We are at the point where if she is left with numbness, that is ok. We can live with that, she can live with that. It’s what she wants, just so long as she’s not left with pain, or more pain. We must decide which surgeon will perform this surgery, it is key in determining her outcome. We will be busy in the next few months determining where and when to have this done, but we will need to have it done.

Thank you all for caring so much about my daughter. She is wonderful, bright, kind and caring young girl who deserves to get her life back, and I’m confident that she will. We will be able to put all of this behind us one day soon…with a little help from our friends :)

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.