3 weeks post of 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.

http://www.enttoday.org/details/article/1057653/Targeting_Headaches_Trigger_release_surgery_an_option_for_patients_with_chronic_.html

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.

Update after 12/2/13 Surgery – Re-do of Greater Occipital Nerve Decompression

Olivia’s most recent surgery was on 12/2/13, with Dr. Guyuron in Cleveland, OH.

http://drbahmanguyuron.com/procedures/migraine-surgery-cleveland/

His testimonials page is quite impressive, as is Dr. Ducic’s in DC where she had her first 2 surgeries.  (Links available) I know it’s getting confusing for people to keep track of her surgeries, what they were for and if they were successful or not.  It’s been such a journey, a process, and with varying results.  This most recent surgery in 12/2, was an attempt to re-do the decompression that she had done in June with Dr. Ducic.  The June surgery was her first one, and was very successful….for 3 months until her pain returned.  The fact that she had such a positive response, however, was indicative that she does have a neuralgia, that this is a nerve issue, and that another surgery would work.  The question was do we do decompression again (and try to ‘spare’ her nerve, or do we go ahead with excision and actually cut the nerve).

Her surgery in October was excision, actually cutting the nerve, in her temple area and this was successful.  She is pain free in the temple area.  She had complications with asthma after this one, but the end result was positive.  The throbbing pain in her temple and cheeks is still gone.  It was right before this one that her Occipital pain returned, however, and since then had gotten so bad we had to address the Occipital area again. (see photos page to see where her surgeries were)

Dr. Ducic in DC was not available to see us again until Jan, and we were hoping that we could get her back to school by Jan so we went to see Dr. Guyuron instead.  He is the Dr that actually discovered this surgery, and taught other doctors about the procedure.  Dr. Ducic in DC went to him to learn about it.  They are both experts in their field, and have perfected their own technique and way of doing it, which may differ a little from each other, but they are both of the same concept.   Dr. Guyuron is leery to cut the GON (Greater Occipital Nerve) unless absolutely necessary, as it is a large nerve running up the back of your head.  These nerves are only peripheral, sensory nerves, they provide sensation and in no way affect motor function, but I was leery to cut the nerve and leave her with a numb head for many, many years, possibly most of her life.  Although where she had excision before, she said it does not bother her at all, and she would prefer the numb feeling over throbbing pain.  We thought we’d try decompression once more, just to see if we can spare it.  Dr. Guyuron said that the biggest cause of returning pain after surgery is scar tissue, and she did have scar tissue built up, she also had a blood vessel that was pressing on the nerve.  During his surgery he removed the scar tissue, and the blood vessel that was pressing on the nerve, he also will pad the nerve with fatty tissue to help prevent returning pain, (I don’t think that Dr. Ducic does this) and he injected cortisone into the area to help prevent scar tissue build up.  I had HIGH hopes for this one, I thought for sure this would be the answer.  Since she had such great results the first time, it just didn’t last, I thought that this time with a different technique that we would see the same results, but hopefully it would last longer.   I was so hopeful, that we met with her counselor and got her schedule set for her return to school in January, we picked out her classes for high school, and felt relieved that we are getting her pain relief and back to school before she must begin high school.

It’s now been 3 weeks since the surgery, and we are not so sure that the results will be what we expected.  She always has numbness after surgery, for at least 2-3 weeks, it’s hard to tell the results too soon.  Once the numbness starts to wear off, she can tell if she still has pain there or not.  There is a difference between the soreness from surgery pain, and the throbbing headache that she is so used to.  As the numbness began to wear off, she just told me a few days ago that she can still feel the throbbing on the top of her head.  In the very back, where the incision is, she still has some numbness so we aren’t sure what that pain will be, but she said she can feel throbbing there too, it’s just still numb.  She was also not sure that this surgery was going to be as successful because she did not get any relief from her light sensitivity, and she did the first time.  After he first surgery, she had much relief from the light, but not at all after this one.  She also still has constant pain in her eyes, and there is a different surgery necessary for that area. It would be either  decompression or excision of the supraorbital nerves near the eyebrow that cause that pain, many people have success with that also.

We must wait to speak with the doctor as we have a follow up phone consult scheduled for next Friday, 1/3.   They have said that it can take time, and she might have some swelling still but she feels that she can tell the difference between the types of pain, and this throbbing is the same headache throbbing that is not going to just go away.   It leaves us feeling like she needs to have excision of the GON, and sooner rather than later.  We need to speak with both doctors, and see what they say, what they recommend, and see who could see her soonest.  If this is our last and only option, we need to do it asap, to get her life back.

She will need two more surgeries, most certainly, at least 2 for the migraines and we have been told she needs a sinus surgery as well.  So maybe 3 before it’s all over, but 2 for immediate pain relief.  We were shown on the CT scan where the problems with her sinuses are, and that she will need and will benefit from that.  That’s a different issue, it is a migraine trigger point, but we don’t think it’s causing her current pain.  The excision of GON will probably give her the most significant pain relief and that might be the next surgery.  Either that or decompression or excision of the supraorbital nerves behind the eyes.  It feels like there are knives sticking in her eyes at all times, 24/7.

This is not ‘just a headache’.  This is a nerve issue, that causes constant pain that never goes away.  We have seen 3 neurologists in the past year that were not any help, we just went to another one, hoping to find a decent neuro that can manage some prescriptions, and at least be a local doctor that can manage her care and work with the surgeon to ensure she is getting the best care possible.  Hopefully this most recent neuro will be of some help.  He is going to try to get her approved for Botox.  If she can have that, she might have some pain relief at least until we can figure out what surgery she needs next (excision of GON, or supraorbital behind the eyes), and figure out where we should go to have it done.  I really liked Dr. Guyuron’s technique, and he is closer to us, only a 4 hr drive vs. 8 hrs to DC.  He used drain tubes which really helped to keep her swelling down, and she did not have any bad reaction with nausea or asthma at all!  I was worried about that, but his technique and staff were so wonderful, I was really hoping this would work.  He did not do excision, he attempted to spare her nerve which was what I wanted as well, so perhaps excision would give the same results no matter who did it…so much to consider and we need some time to figure it out, but we can’t wait too long.  She is going to attempt to get back to school, and that will be very difficult for her with still having the throbbing pain, and the pain in her eyes, and the light sensitivity.   I am speaking with other parents whose children have had excision of the Occipital nerve, and so far those I’ve spoken with are doing great and are glad they had it done.  They do not mind the numbness, it is better than throbbing pain.

We are trying some other things right now, pumping her full of Vitamin B2, B12, and Magnesium.  These are all good things to do, regardless of the head pain, but could provide some help with the nerves.  This is just a case where it’s so severe, things like this are not going to provide enough relief to reverse the damage that’s been done, or stop this cycle of pain.  I’m hoping she can try the Botox soon, I’ve been told by other neuros it’s very difficult to get insurance approval for anyone under 16, but if we can get it approved we’ll try it and hopefully get pain relief until we can get her next surgery.  Botox is very similar to nerve blocks, which give her significant relief, they just last only a few days.  I’ve heard that Botox lasts longer, usually up to 3 months for some people, wow would that be nice.  Hoping we can try that, and have some time to figure out where to go next.  Also hoping she can get through school upon her return.  We have to get this improved before she starts high school in the fall.

Thanks for all your support, I’ll try to keep you all posted with updates.  It’s been hard to do.  I don’t always feel like talking about it, or wanting to air it all out there, but I started this blog to help those that were struggling like my daughter was, and I don’t want to leave it hanging.  I’ll have to finish, whether I’m reporting good news or not, and keep it going until the end, until we have the relief we’ve been seeking and I can say that we found the answers and she is pain free, or at least much improved.  I’ve spoken with and seen so many discussions of thousands of people that suffer daily 24/7 chronic head pain and feel there is no hope in sight.  Please don’t give up, we aren’t.

October 25, update to Oct 9th surgery

Olivia had excision of the temple nerves on 10/9/13.  The surgery was successful in stopping the throbbing in her temple area, which also came down into her cheekbones.  The diagnosis for this pain is called Trigeminal Nueraliga.  She has two vertical incisions in the temple area, back in the hairline so they will be hidden when healed.  She gets her stitches out soon, Tuesday 10/29.  She has had some issues with her asthma ever since the surgery, she had 4 ER visits since the surgery with her in an asthma attack.  This is extra excitement we did not need, and I am wondering if she had some sort of reaction to the anesthesia, we need to find out before her next surgery.  This did not happen the first time, or when she had surgery when she was younger to have her adenoids removed, so I’m not sure what caused it, but her asthma is still not under control even two weeks later, although it’s getting a little better.  This has not affected the results of the surgery, however, which we consider successful.  TN is a very painful condition, and for a minor outpatient surgery to be able to take away the pain, is a very good thing.

It seems that once you get one area under control, however, the pain in other areas becomes much more noticeable.  Her pain in the Greater Occipital area had come back when the results of the first decompression surgery had worn off, about 3 months later, but it was not back full force until recently.  Her Occipital pain is once again so severe that she is still bound to the basement, and is extremely light sensitive.  The Dr. had originally tried to spare her Greater Occipital Nerve (GON), and performed decompression only rather than excision.  This gave her pain relief down to a level ZERO for three full months, and considerably reduced her light sensitivity.  We thought it was gone for good.  Just knowing that she was level 0 for 3 months is confirmation of her diagnosis of ON, and a good predictor that excision will work.  It seems that we must go back and ask for excision now.  It’s really too bad, but it is still the only thing that gives her pain relief, besides a nerve block, and she cannot get those continuously or nearly as often as she would need for pain relief.  A nerve block gives her relief for about 3 days, no more.  She is anxious to get back for another surgery, as she is desperate to get her life back!  We already know they were scheduling for Jan, so are not expecting to be able to get back until sometime in February, four more months.

So, while we are pleased with the results from this recent surgery, we knew she would be needing more.  As mentioned earlier, this is a process, but we still believe in it as nothing else gave her pain relief, of any kind whatsoever.  We will be focusing on getting her asthma under control, and making an appointment for her next surgery.  She wants to get back to DC ASAP! Just the fact that she still wants to go back, and have this next surgery, after all that she’s been through, is testament to the pain relief that it gives her, that she knows she will get from it.

She is still on homebound to try to finish the 8th grade.  School work is very difficult for her, but she is trying to accomplish what she can.