Neurofibromatosis (NF) Tumor Surgery | Hannah’s Story

Neurofibromatosis (NF) Tumor Surgery | Hannah’s Story

>>You go through life with
all kind of challenges. The biggest challenge that
someone’s gonna go through is will I be alive in a year.>>Dear Hannah, in August
2016, day one of treatment. You have a long, difficult
road ahead of you, there’s no doubt about it. Remember in the darkest times, your family and friends love
and support you so much. I was diagnosed with a genetic disorder called neurofibromatosis type one when I was very little
and my doctor’s have been following me my whole life.>>We found out when she
was a year and a half old that there was a complex
tumor growing in her chest that called a plexiform
tumor that about half of people with NF-1 have.>>Neurofibromatosis type one
is a neurogenetic condition. If can involve tumors of the deep nerves that can result in sensory
disfunction or motor disfunction. It can involve tumors on the
skin that cause disfigurement and it can unfortunately result
in life threatening cancers.>>As Hannah got older, her MRIs had shown that the tumor in her
chest continued to grow.>>Last May I had a scan
as part of a study at NIH called the Natural History Study. They found out that the one in my chest, which was the one they had
been monitoring for years, had turned cancerous.>>Given how active it was,
it was probably gonna need to be removed for her safety. NIH felt that Hopkins
was gonna be the best place to have it done because
of Dr. Belzberg being there.>>Hannah: Hannah, you should
be thankful your cancer was caught in the early
stages of malignancy and that you’re being
treated at one of the best hospitals in the nation.>>Before we worked with Dr. Belzberg, we were connected through the NF clinic to do additional scans to get a little more information about the
tumor and its characteristics.>>Time is always of
the essence when we’re thinking about a malignancy. We needed to identify who needed
to be involved in her case and get her the tests and studies needed so that she could begin
treatment for this malignancy.>>This was an exceedingly
complicated tumor. Hannah’s tumor starts
high up into the neck and then extends under the
collar bone or clavicle, goes down in the chest and
sits on top of her heart and the great vessels that exit the heart. The tumor that’s malignant is right here. The heart is sitting here, the
great blood vessels are here. This is one of the blood
vessels coming here going right through the
tumor that was heading up towards the brain.>>If he’s not able to
isolate that particular artery well enough, she would probably die on the operating table.>>It became very clear that for Hannah the only realistic approach
to control her tumor, to give her a hope for a good life, was to go in, get an
aggressive surgical resection, remove that tumor in one
piece with a negative margin.>>He knew it was a fairly large tumor and he said the strong likelihood is that if I can get that whole
tumor out in one piece, she’s gonna lose the use
of her entire left arm just because of the other
nerve that’s gonna have to come out in order to
get that out in one piece.>>As the surgeon you’re
making decisions as you go, understanding everything has risk and everything has benefit. Once we got started with the surgery, we really worked very well as a team. We have a vascular surgeon,
we have a chest surgeon, and we have a neurosurgeon. Some of the best people in the world in each of these disciplines. During the surgery I know
that we had to manipulate the nerves a fair amount
to get the tumor out and that was a reasonable risk to take for the pay off of having the tumor out. But I really did not know for sure the impact of that until
I could check Hannah, until she was wide awake.>>They let us into see her in the pediatric intensive care
unit when the surgery was done and she was laying there in the bed with all the nurses crowded around.>>I was able to move the
fingers in my left hand. Everyone was like, I can’t believe it, you’re not supposed to be able to do that.>>Her hand and arm was working perfectly. That was a wonderful moment. (laughter)>>I’m saying it works great.>>Patients with neurofibromatosis face so many challenges in life. It’s astounding. It amazes me how resilient they are and how they are able to maintain a positive outlook on life.>>That really is exemplary
of our patients with NF-1. That they take on tremendous challenges that would humble any of us and march on.>>Hannah is a amazingly strong
person for her young age. She was truly inspiring.>>That most important thing to remember is it’s not about when you celebrate but that you get to spend
time with the people who love you the most. After a hurricane, there
is always a rainbow. Love always and forever, Hannah
three months post treatment. (inspirational music)

39 thoughts on “Neurofibromatosis (NF) Tumor Surgery | Hannah’s Story

  1. i'm doing research for a biology paper on neurofibromatosis, and this story is so inspiring! i doubt she would see this but i hope she's doing well 🙂

  2. What an incredibly brave young lady. I watched this video and I feel guilty stressing about my issues which are nothing compared to what Hannah has been through. I too had cancer and had a hysterectomy to remove it all. It's been two years and I'm still cancer free. I have other issues, like the inability to stand or walk much, but nothing like what she has going on. Hannah you are so beautiful and have more bravery in your pinky than I do in my whole body (and believe me, I've got a big body). I wish you and your family luck and continued success.

  3. I am very hopeful after haven watched this video not only for the successful achievement by the professional medical consultants but for I am also a victim of a NF1with multiple tumors around my body especially on both legs(tights to the knees).I also have the dark brown patches on the upper part of my left arm(almost a circle of 6" diameter)and both sides of my stomach that covered not less than 10"in width and 2/3 of the potions around my stomach skin. The joy is for the good news that successful surgery can be achieved by the professionals(in cord).probably with lesser risks of reoccurrences. It's also delightful to note that this doctor

    can imagine the seriousness of the pains we do go through.

  4. All the best Hannah! You are a true fighter and an inspiration for so many other people with NF1

  5. Hello everyone, my name is Martco, I am suffering from NF1 and I opened a channel where I talk about the problems that neurofibromatos can bring

  6. My son and I was born with NF 1. I get migraine headaches all of the time. I have alot of issues this condition and I hate it!

  7. My brother had NF and he had tumors in his brain stem. Surgery wasnt an option. He died when he was 16.

  8. I Have NF1 just recently had one surgery to remove one tumor going in for my second surgery on march 6, 2019 to remove the rest of the tumor..

  9. Always loved Hopkins. I am so lucky to live near this hospital. Every doctor I came across with my NF there was amazing, my optic glioma due to NF was amazing and my surgeons and neurologist for my brain surgery incredible. If I have to make one wish though for Hopkins is the food to better come on, haha they are not known for their food but absolutely known for great knowledge, care and loyalty and heart for all patients. I've been there since I was 3 now until almost 40 and thank you for sharing this story.

  10. I have had Nf1 since birth
    I'm now in the 9th grade and I'm 15.

    A couple week after I turned 14 I went to a minute clinic and she sent me to the emergency room because my right lower admin wasn't as soft as my left.. they did scans and found out I had a tumor.. so they sent me to the Childerns Hospital of Georgia. (like one week after) They looked at the scans and recommended I got it removed as soon as possible since it was on the larger side. so after some scans there on March 6th 2018 I had my surgery to remove the tumor. before my surgery we were told their wasn't. a high chance of it being malignant since most nf tumors are begin. So I want that worried about it.. I knew God would look over me. So yes I needed help getting my strength back in my leg which wasn't easy easy.. but I did. I finished school on homebound because a couple week after the tumour got check to make sure.. and it was a malignant tumor.. so.. since it was malignant on April 16th 2018 I began radiation therapy to get the rest of the tumor that couldn't of been gotten out during surgery without harming my right leg movements. So I had radiation for 5 days a week for 6 weeks. i finished on May 23rd 2018. I'm glad God watched over me during all of it. and I went to a great hospital and am glad I'm ok.

  11. I had this exact plexiform on my right brachial plexus, that was pre-cancerous. My right arm was paralysed in 2001 (I was 31)following the surgery to remove my large tumour. 18 months later, it recurred, and I had further surgery. I had been able to shrug my shoulder after the 1st operation, but after the second, any movement I did have, went. I have to wear a sling 24/7, and although the nerves were severed, for some reason, my arm started violently twitching about 5 years ago. It does it constantly and it is very distressing. I've seen several neurologists but they don't know why it does this.
    I used to be a staff nurse, but nf1 made it impossible to continue. Hannah was very lucky to retain movement in her arm. I wish her lots of love, and hope her nf doesn't progress in the future x

  12. On a meat and fat only diet NF1 ceases to exist. I know. I cured my NF1 this way. There's no reason to get emotional about NF1 after you don't have it anymore. It's all about restoring cellular energy to epigenes so that they can recode from alternative healthy gene sequences.

  13. You are an inspiration!!!!! I have NF1 and Moya Moya which is very rare for an American Male except with NF1. since birth

  14. I was diagnosed with nf1 at 15. I am 33 now. I have tumors on my spinal cord. 3 years ago I needed spinal surgery. Dr. Santiago at Barnes Jewish saved my life. From 15-30 every doctor that looked at my scans asked if I was still able to walk. After my surgery I had a month of physical therapy. I was able to walk and I can still walk today. 3 years ago what made me go to the hospital was what I thought were muscle spasms. The spasms started in my back, eventually they were full body. My local e.r. thought they were seizures. I was developing a full stutter. They sent me to Barnes Jewish. Dr. Santiago said that was thr nerves dieing. He gave me 2 options. Surgery or paralyzed in less than 2 tears. I opted for surgery. I may need surgery again. Despite meds every day I still have pain and my spasms are back. Hannah's story has inspired me. Thank you for sharing.

  15. I have NF1 as well. I lost my left leg through the knee when I was 3 yrs old. I wear a prosthesis. I never let it slow me down as a child. Sure I may have had to modify my approach, but I enjoyed all the same activities as my friends.

Leave a Reply

Your email address will not be published. Required fields are marked *