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

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.

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. 

September 27, 2013

Just thought I should update on Olivia’s latest status.  She has been back on homebound for school since about mid-September.  Pretty much, right after I made the blog, she realized that her pain was just too intense, she couldn’t take it.  The pain in her eye and temple area is the worst, as that area has yet to be addressed.  Her next surgery will be excision of the temple area, and we are hoping that this gives her enough relief to get back in school.  She is back in the basement again, as her eye and temple pain is feeling worse, and she is having some pain in the area of the top and back of her head, where she had decompression only of GON.  It’s not nearly as bad as it was, but it’s not still a level ZERO like it was for 3 full months after the surgery.

The anesthesiologist that we see, said that because she had complete relief for 3 months, even if it comes back, is confirmation of her diagnosis of Occipital Neuralgia.

Your question will be whether or not you feel the surgery was a success?  Yes, it was.  That’s why we’re going back.  The Dr tried to spare her nerve by doing only decompression of the Greater Occipital nerve in the back, and excision of the Lesser Occipital nerve on the sides of her head.  She is still pain free in area of excision, but is experiencing some pain where she had only decompression.  For those that suffer with NDPH, constant 24/7 pain, they know that even a reduction in pain from a level 10 to a level 4 is considered a success.  This is about where her pain level is in the GON site, but it’s still a 9 or 10 at temporal / eye area, so that is what we are focusing on next.  This is a process, it’s not a simple procedure that should be expected to be a cure all, it takes time.  We have the utmost faith in our surgeon, Dr. Ducic, and cannot wait to get back to see him.  He is the only Dr. that gave her relief, and he will do it again, we are sure.  We are still confident that by the time we are done, she will be either pain free in all areas, or very close to it.  These conditions of CM / NDPH / and ON are so painful, that even a 30% reduction in pain is considered successful.  And if you are a sufferer, most would do anything for that amount of relief, wheres to be pain free is considered a miracle.  We are still hoping for pain level ZERO of course, but will settle for a significant reduction that allows her to get on with her life.  We are on our way, but it is a long journey.  Please don’t give up hope, if you are looking to this site for hope, I hope that’s still what you are getting.  We wouldn’t be going back if we didn’t believe in it.  It takes time.  I will update after her temple excision, and let you know how that goes.  We are excited for it.   Really hoping that she can get back to school if she gets enough pain relief, she misses school, and her friends.