Ganglioneuroblastoma...

Lukemcglennon · September 2012

dazzlemn said:
Mirror image
Hi Kaylasmom,

We have been in full tilt since my posting, and this is the first time I've come back to the site. Our daughter actually had surgery at Children's Amplatz at the U of M, on the day of your posting. Thanks so much for sharing: It really helps to know others are experiencing similarly on so many levels.

The team at the eleventh hour, determined best procedure was to go for complete removal: Tumor was about the same size as your daughter, but on the left side. 8 1/2 hours surgery with similar results/ feelings. Minor vocal cord impact, significant nerve damage in her left arm/ hand from brachial plexus interruption. We just had a CT scan and determined no active cells: GREAT NEWS! Rehab is focused on restoring her hand function (She is left handed, and is still not able to write with that hand)

My daughter is a junior in high school, and was getting ready for Debate/ Speech and all the activities a junior in high school was looking forward to when this all surfaced. We all have a new normal (My wife's words), and are learning to deal with it.

Thanks again for taking the time to share your experience: It means so much.

Best wishes for a good recovery for your daughter and her whole family, and best wishes during the holiday season..

Gnb
I was diagnosed in january with nuroblastoma at 21 i had chemo but did not shrink, then had surgury then they said it was not a NB but a ganglionueroblastoma, i am having more chemo to try and get rid of the rest and hopefully another op. i was told i was the only person in the world at the time if my diagnosis to have a GNB i am 21 year old male and looking for support thank you

ajadestar · March 2013

cgmt said:
side effects
Hi Me Too - I'm 34 and I had it as a child too, and I have definitely been left with lasting effects. I'm also curious about the adult experiences of other survivors.
Mine was at the top of my left lung (it was causing a cough), so they went in under my left arm to remove it. There is a lot of numbness in the scar area, from my elbow to my shoulder blade. I also have a fair amount of nerve damage - my left hand is small and my fingers are unusually tapered at the ends, its skin is ridged and very dry, and my fingerprints are barely there. I don't sweat on my left side from the chest up (there's actually a straight line down the middle of my face, left half white, right half red, when I exercise), and my left eye was particularly affected. Because the nerve damage happened when I was so young, it never developed my brown adult eye color, so it's newborn-baby gray/blue, the lid is a little droopy, and the pupil is constricted.
Other than the nerve damage, my internal scar tissue is somewhat painful from time to time - when I run or swim, eat too much, or take a sudden deep breath. I'm really worried about how that would feel if I were to become pregnant.
Aside from all that, the last big problem I've been left with is my thyroid. As a child, I had radiation treatment after my surgery, and then as a teenager, I noticed a thyroid nodule. Because of my radiation history, they decided to remove the nodule and the affected half of the thyroid, leaving the other half to pick up the hormonal slack. Well, it didn't, so I've been on thyroid replacement hormones half my life. Also, the remaining half has since developed several nodules, but the doctor doesn't want to remove them because the surgery would be risky with all the scar tissue that's now there. So, aside from a lifetime of painful biopsies to keep watch for possible thyroid cancer, the problem is that this time the nodules are painful themselves, which has been a struggle. They've bumped up my thyroid hormone pill levels to try to shrink the nodules and reduce the pain, which has mostly worked, but the added hormone makes me anxious and jittery, so they have me on a beta-blocker to slow down my heart and balance the effect of the thyroid. I'm not crazy about that solution, but don't see another option.
The only other problem I can think of is that I'm also a huge hypochondriac - I mean, a cough that turns out to be cancer?? That pretty much set me up for a lifetime of medical anxiety!
I've never met another survivor either. What are your side effects?

side effects & toe

side effects & toe walker,

So it seems like there is a there is a large connection to scoliosis and these tumors when it touches the spine. Interesting. My side effects also include scoliosis. Aside from my spine, my other side effects reside on the left side. My left eye is a little lazy, I have a slight hearing loss in my ear, I can't straighten my arm all the way straight, I have short Achilles tendons in my ankle, which explains the toe walking my mom was noticing. I have had 4 surgeries to lengthen the tendon but none were successful. And a scar on my abdomen just above my belly button that literally cuts me in half and droops in on the scared side. I also have an extremely high metabolism rate since the surgery; I was extremely chunky before, since I struggle to gain weight. I didn't weigh 100lbs until I was 18 years and I'm 32 now at 120lbs. The most I have ever weighed Well aside from when I was pregnant.

Side effects, I was really worried about my scar too when I got pregnant. I have needle like pains in mine and it doesn't want to stretch for nothin. I was so scared my baby was only going to grow on the right side of my stomach, totally sticking out, n' throw me off balance I was also terrified I wasn't going able to gain enough weight for her. But Creator watched over both of us and I gained the perfect amount of weight n' my scar stretched out normally. I carried her beautifully The delivery was another story though..... Because of my scoliosis, not only were they not able to get the epidural in all the way, so I had to give birth to her naturally, but I also I slipped a disk, and partially dislocating my left hip. I will be considering a C-Section if I have another baby

justmenita · March 2013

Lions3 said:
Daughter Diagnosed with Ganglioneuroblastom
My daughter was diagnosed with Ganglioneuroblastoma at age 14. She's had surgery to remove about 70%. The remaining is surrounding the spine and we were told it would not be able to be removed. She has gone through agressive chemo and radiation until about 8 weeks after radiation ended. She's had incredible back and abdomial spasms creating back pain which has been very difficult to treat. We are currently at Chrildren's Hospital, but it appears that the Dr's are having a very difficult time assisting her. We have taken very large amounts of valium and other muscle relaxers. We are on non-stop medication at the moment and are really trying to find relieve for our daughter.

Has any of you experienced similar situations and what was done? We are desperate for her.

daughter survived ganglionneuroblastoma in spine

My daughter first got sick when she was only 4 years old. She would scream with pain in her leg, and was having difficulty walking. For months we were taking her to an orthapedic specialist . This was back in 1980. He did lot of x-rays, and blood work, but found nothing. In the mean time, my daughter continued to cry with her leg hurting. After a few months , the pain subsided , but she continued to struggle with walking, and her leg became weak. When she was 5, it was discoverd she had scoliosis . She was followed for this for the next few years. At one of the clinics for her check up, a doctor took an interest in her case. She had a very mild case of scoliosis, but when she would bend over , she had an extreme curvature of the spine. He took pictures , and called me about two months later, and suggested further testing. He believed she may have a tumor. He was right on. A few months later , after several more test, and doctors , she underwent surgery for a tumor that was wrapped around her spinal cord, involving most of her spine. This was in 1984. she underwent over 12 hours of surgery at Childrens / Barnes Hospital in St. Louis. A top crew was put together by Dr. Keith Bridwell. After the surgery the neurosurgeon told us that it was a fatty tumor, that was rare, that they had gotten most of it, but left some at the L4/L5 level. They were not sure if it would grow back or not. Fast forward throgh the next several years of checkups. When she was 14, we received a letter from a student doing research on cancer survivors. We had never even been told the name of the tumor at this point. I threw the papers to the side and never thought about them again, until the next checkup a few months later. During that visit I found out that she had a ganglionneuroblastoma, which had grown back. This time, not much regrowth in the spine, but it looked like the tumor was attached to the kidney. A few weeks later she underwent another surgery , with a Dr. Mollman doing the surgery. And thankfully it was not attatched to the kidney, and with improvements through the years , they were able to get all of the tumor from the spine this time. My daughter is 36 now, and has had no regrowth of the tumor. From my understanding of a ganglionneuroblastoma, they do not respond well to chemo or radiation. I see by the post that this was a couple of years ago. Have they done anything for your daughter since? The older my daughter is getting, she has days where she has muscle spasms and pain also.

ajadestar · March 2013

ajadestar said:
side effects & toe
side effects & toe walker,

So it seems like there is a there is a large connection to scoliosis and these tumors when it touches the spine. Interesting. My side effects also include scoliosis. Aside from my spine, my other side effects reside on the left side. My left eye is a little lazy, I have a slight hearing loss in my ear, I can't straighten my arm all the way straight, I have short Achilles tendons in my ankle, which explains the toe walking my mom was noticing. I have had 4 surgeries to lengthen the tendon but none were successful. And a scar on my abdomen just above my belly button that literally cuts me in half and droops in on the scared side. I also have an extremely high metabolism rate since the surgery; I was extremely chunky before, since I struggle to gain weight. I didn't weigh 100lbs until I was 18 years and I'm 32 now at 120lbs. The most I have ever weighed Well aside from when I was pregnant.

Side effects, I was really worried about my scar too when I got pregnant. I have needle like pains in mine and it doesn't want to stretch for nothin. I was so scared my baby was only going to grow on the right side of my stomach, totally sticking out, n' throw me off balance I was also terrified I wasn't going able to gain enough weight for her. But Creator watched over both of us and I gained the perfect amount of weight n' my scar stretched out normally. I carried her beautifully The delivery was another story though..... Because of my scoliosis, not only were they not able to get the epidural in all the way, so I had to give birth to her naturally, but I also I slipped a disk, and partially dislocating my left hip. I will be considering a C-Section if I have another baby

ajadestar

I really want to thank those of you that responded to my post. I have so many questions and thoughts. I would really love to keep in touch and form some personal support, bonds. My E-mail address is ajadestar@hotmail.com

Concerned Mommy · March 2013

Ganglioneuroblastoma

Hello everyone,

I stumbled upon this site while researching Ganglionueroblastoma, for a informative speech I have to give in my speech class. I decided to speak on this because my daughter, who is now 5 years old was diagnosed and treated for this at the age of 2 years (2010). I had taken her to the doctor because I had noticed she would be limping on her legs from time to time, and no physical harm was being done to her. Of course the doctor put it off as to her falling or bumping her legs on something, which I knew wasn't the case, so I decided to switch her docotrs, and ended up switching insurance as well because the new doctor didn't accept her current insurance. During the time of me switching her doctors, she went to bed fine one night, and woke up the next morning and couldn't stand or walk on her legs. Honestly, because of the previous limping I just thought, there is a problem with her legs, and she''ll just have to wear leg braces for a while. Finally the doctors were switched and I made an appoinment. The doctor sent us for multiple tests including blood and urine, x-rays, and MRI, which took place on 04/02/10. I was told that results will be back in a few days and that I would be contacted then. We left the hospital and about four hours later I got a phone call saying they needed her back at the hospital right away because a tumor was found. We returned to the hospital and further tests were done. This time they did a CT scan, and I was told that she had Ganglionueroblastoma that strated in her left chest and begin to wrap around her spinal cord, compressing it, and was progressively paralizing her. She was transported by ambulance to All Children's Hospital for emergency spinal decompression on the fourth of April. Later, on the 13th she had surgery to remove the tumor from her chest. As a result of the surgery she now has kyphoscoliosis, which means her spine has a hump, as well as a curve in it. She needs more surgery to correct t he problem but because of the hump in her spine, this is very challenging. She still has complications from this from time to time but overall is a very happy little girl. She's very strong as well. She was sent for a MRI of the brain and full spine today, because she's had more frequent complications theese pat few weeks and doctors are concerned that the cancer has returned. It is great to see other survivors of this cancer, as it is so rare. I knew there were others out there, but I had never heard their stories until now. Thanks for sharing!

ajadestar · April 2013

Concerned Mommy said:
Ganglioneuroblastoma
Hello everyone,

I stumbled upon this site while researching Ganglionueroblastoma, for a informative speech I have to give in my speech class. I decided to speak on this because my daughter, who is now 5 years old was diagnosed and treated for this at the age of 2 years (2010). I had taken her to the doctor because I had noticed she would be limping on her legs from time to time, and no physical harm was being done to her. Of course the doctor put it off as to her falling or bumping her legs on something, which I knew wasn't the case, so I decided to switch her docotrs, and ended up switching insurance as well because the new doctor didn't accept her current insurance. During the time of me switching her doctors, she went to bed fine one night, and woke up the next morning and couldn't stand or walk on her legs. Honestly, because of the previous limping I just thought, there is a problem with her legs, and she''ll just have to wear leg braces for a while. Finally the doctors were switched and I made an appoinment. The doctor sent us for multiple tests including blood and urine, x-rays, and MRI, which took place on 04/02/10. I was told that results will be back in a few days and that I would be contacted then. We left the hospital and about four hours later I got a phone call saying they needed her back at the hospital right away because a tumor was found. We returned to the hospital and further tests were done. This time they did a CT scan, and I was told that she had Ganglionueroblastoma that strated in her left chest and begin to wrap around her spinal cord, compressing it, and was progressively paralizing her. She was transported by ambulance to All Children's Hospital for emergency spinal decompression on the fourth of April. Later, on the 13th she had surgery to remove the tumor from her chest. As a result of the surgery she now has kyphoscoliosis, which means her spine has a hump, as well as a curve in it. She needs more surgery to correct t he problem but because of the hump in her spine, this is very challenging. She still has complications from this from time to time but overall is a very happy little girl. She's very strong as well. She was sent for a MRI of the brain and full spine today, because she's had more frequent complications theese pat few weeks and doctors are concerned that the cancer has returned. It is great to see other survivors of this cancer, as it is so rare. I knew there were others out there, but I had never heard their stories until now. Thanks for sharing!

Concerned Mommy

Many prays for your lil girl. I have my own lil girl who is 6 now, and I couldn't imagine going through what you and my mom have.

shh · August 2013

ella_bean said:
Toe walker...
Hi Ajadestar,
So,so, SO nice to see you smiling...as the mother of a 2 year old who has ganglioneuroblastoma and was diagnosed in almost the exact same way as you were. What I find interesting is that she was a toe walker also and arm flapper, and my immediate concern was autism at around 15 mos. I had her diagnosed and was told that she was not autistic, above average intelligence, and she was probably presenting these behaviors as a way of dealing with stress or loud noise etc...still I couldn't shake the feeling of something serious being wrong with my child(sounds strange I know).
Several months later she was diagnosed by accident from a chest x ray that had nothing to do with her tumor. Our pediatrician tried to tell me that she had asymptomatic pneumonia and wanted to start her on a round of antibiotics. I KNEW in my stomach that she didn't have pneumonia, and I said she could begin antibiotics if I had her word that she would email it to someone who was a specialist in childhood cancers. I saw that x ray and knew if it wasn't pneumonia, then it was bad.
Our pediatrician said it wasn't that serious, but I told her I wouldn't start the antibiotics unless she promised me. I got a phone call at 6 am the next day(Saturday) from a surgeon in Los Angeles telling us that we needed to stop all antibiotics and drive there that day. It was wrapped partially around her spine, and they didn't know if it was malignant(neuroblastoma) or benign(ganglioneuroma) or "in between" (ganglioneuroblastoma), but they wanted to take all of it except the small area in the spine, because they were worried about extreme nerve damage, mobility etc. They thought that her body might absorb the remaining 2%. She did have very pronounced Horners Syndrome after the surgery (eye droop) but at almost 3 now, it has completely disappeared. She seems incredibly healthy other then that so far. Unfortunately we are in testing again, because the most recent MIBG showed some activity on the opposite side of her body, and her urine spiked a bit. The MRI showed the same spot with not enough info, so we are going for a CT scan next.
My fear is that they will want to take the rest out of the spine area and she will suffer extreme nerve damage, possibly lose her ability to walk. I'm also concerned about the monthly testing MRI, MIBG etc. I think issues with her thyroid are a very real possibility. How are you dealing with your after/side effects? You look healthy and happy in your picture.

Toe walker and arm flapper

My 5 year old Granddaughter is a toe walker and an arm flapper, she was diagnosed with ganglioneroblastoma in June by accident. I have seen too in this forum that legs hurting is how they found out. Thats how it was found, she had the flu and then she got up and her legs hurt to walk on so she went to the Hospital and they found it with an xray. Hers was behind the right lung and was pressing on her ribs, not on spine at all. She had laproscopic surgery in July 2013, it was wrapped in nerves so it took 7 hours. They feel that they got it all so they did not do a bone marrow test. She does have a slight droop on her right eye that may go back to how it was. She also says something and then repeats it silently, which I looked it up and that is called Transient Tic Syndrome. My son, her father did that and outgrew it like they say they wil. I wonger if anybody else does this, to see if its all related. Starr id doing good and doesnot go back untill October, for a baselinr MRI and CT scan.l

ajadestar · December 2013

ajadestar said:
side effects & toe
side effects & toe walker,

So it seems like there is a there is a large connection to scoliosis and these tumors when it touches the spine. Interesting. My side effects also include scoliosis. Aside from my spine, my other side effects reside on the left side. My left eye is a little lazy, I have a slight hearing loss in my ear, I can't straighten my arm all the way straight, I have short Achilles tendons in my ankle, which explains the toe walking my mom was noticing. I have had 4 surgeries to lengthen the tendon but none were successful. And a scar on my abdomen just above my belly button that literally cuts me in half and droops in on the scared side. I also have an extremely high metabolism rate since the surgery; I was extremely chunky before, since I struggle to gain weight. I didn't weigh 100lbs until I was 18 years and I'm 32 now at 120lbs. The most I have ever weighed Well aside from when I was pregnant.

Side effects, I was really worried about my scar too when I got pregnant. I have needle like pains in mine and it doesn't want to stretch for nothin. I was so scared my baby was only going to grow on the right side of my stomach, totally sticking out, n' throw me off balance I was also terrified I wasn't going able to gain enough weight for her. But Creator watched over both of us and I gained the perfect amount of weight n' my scar stretched out normally. I carried her beautifully The delivery was another story though..... Because of my scoliosis, not only were they not able to get the epidural in all the way, so I had to give birth to her naturally, but I also I slipped a disk, and partially dislocating my left hip. I will be considering a C-Section if I have another baby

Update

So I thought I would post a little update as I feel it may help others......... In the past 2 years, I have exhausted every specialist in Oregon that thought they may be able to figure me out and help. Sent from one to another before it was finally discovered.... Due to the tumor, ALL the bones, muscles, and tendons on my left side (the side the tumor was residing in) never fully developed. Presently, the poas tendon (in the hip structure) is shrinking. This is causing my entire hip structure to be pulled inward. It's very painful. Normal procedure would be to sever the tendon; releasing the structure, allowing it to full back into place. When they do this, they are relying on the glute muscle to support the structure. However because my glute muscle never fully formed on the left side, there is not enough muscle to hold the hip structure in place, and it would most likely collapse.

I moved to another state in October and hope that I will be able to find some help here or in another state close by.

Ganglioneuroblastoma...

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