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!!!!

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.

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.