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Mar, 14
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COMMENTS
Thomas Inge, MD, PhD

About the Author Thomas Inge, MD, PhD

Thomas Inge, MD, PhD, is the surgical director for the Surgical Weight Loss Program for Teens and the director of the Center for Bariatric Research and Innovation. He has authored or co-authored over 120 peer-reviewed publications and book chapters, mostly related to minimally-invasive surgery and pediatric obesity. He has been funded by the National Institutes of Health since 2005 to conduct clinical research related to pediatric obesity, endocrinology, and bariatric surgery.

Comments:

  1. […] have published reviews and their own unique findings on this topic. Dr. Inge recently wrote a blog post explaining exactly how this procedure can potentially help counteract the miscommunication between […]

  2. I have HyOb from a Craniopharyngioma that was removed 2 years ago and have since more than doubled my weight. I have tried diet after diet after diet and nothing has worked. I am soon going to start the Atkins diet. This article explains perfectly how I feel and how I am treated. Thank you.

    Cade Larsen - March 31, 2014 at 6:06 pm Reply
    1. What you describe is exactly what has happened to our son, Henry. He was diagnosed and had surgery for a Craniopharyngioma two years ago and has doubled his weight (75 to 150). Now at 12 years of age, we’re thinking we need to do something more substantial than just trying to watch what he eats and encouraging him to exercise. This is a difficult problem requiring an intentional, focused, organized, persistent, dedicated, and intense response. Surgery may be the only way.

      Dan Gallagher - June 16, 2014 at 10:18 am Reply
    2. Hello,

      My daughter was diagnosed with Craniopharyngioma in January of this year. She is now 7 years old. The tumor was resected in February. Since the resection my daughter has gained over 50 pounds. She weighted about 55 pounds before surgery she is now 112 pounds and gaining. She has been diagnosed with hypothalamic obesity. We live in Chicago. She is being treated at Lurie’s Children’s Hospital within the endocrinology and neurosurgery departments. I have also taken her to an endocrinologist at Christ children’s hospital here in Chicago. Each doctor feels as though there are no options for my daughter other than diet restrictions. The only medications she takes for this specific problem is metformin and it isn’t working. They tell me about small research studies related to medications that are not approved for her age group and other than that we are at a stand still. My daughters quality of life has been seriously effected. I feel like we are alone with no help. I want my daughter to have some sense of normalcy. There has to be something more that can be done to help her. At this rate we have to try all options. Dr. Inge if you can please refer me to any medical centers that may have more knowledge of this problem please do so. Thanks in advance.

      Tracy Jones - September 16, 2015 at 8:20 pm Reply
  3. I also have been Dx with HyOB after I had brain hemorrhage due to possible AVM. I was 28 yr at the time working as exercise physiologist never weighting more than 125-128lbs. In less than 6mo I was up to 180lbs starving myself even though I just wanted to eat and exercise even more than I ever did already. Still didn’t matter, I had doctor after doctor tell me it was my fault and I wasn’t exercising enough and eating right. I became severely insulin resistant. After about 2yrs I finally had a doctor tell me he thinks I had HyOB. My age was a big factor in being over looked in this process. I continue to deal with the weight on difference medications, I changed my career as I felt that impacted and hope awareness is made known especially for all these children.

    Rachel - June 18, 2014 at 10:49 pm Reply
  4. is the symptom always extreme hunger? I am not hungry or eating more but still gaining after surgery.

    cara - September 16, 2014 at 9:43 pm Reply
  5. Hi

    What does the future look like after this procedure in say 2-5 years time? Have any of the patients reviewed gained their weight back?
    I’m also wondering why this procedure is a last resort? Because if diet and exercise don’t work and to my knowledge there are no successful drugs developed yet… Wouldn’t this surgery be more beneficial from the start rather than waiting until the patient is considerably overweight? I ask because my niece is suffering from this and her weight gain is very rapid (30kg in 6 months and still rising) and the pain/pressure on her young body has increased immensely.
    Also have there been any adverse side effects with this procedure?

    Thank you
    Steph

    Stephanie Rowe - October 7, 2014 at 6:17 am Reply
  6. Hi, I gained 90 pounds very rapidly after brain surgery in 2006. Pathology came back as JPA but seems to behave like a Craniopharyngioma. Have tried for years to get the weight off through diet and exercise with personal trainers. Nothing has helped. Since I am not a pediatric patient, never had many answers. Now wondering if bariatric surgery is my only hope? Since most doctors I have seen don’t seem to recognize or understand Hypothalamic Obesity, not sure where to start or who to see. I am in the Philadelphia suburbs. Any recommendations?

    Kelli - October 19, 2014 at 12:03 am Reply
  7. My daughter was first diagnosed with a craniopharyngioma in 1996 and had a recurrence in 1997. She was 16 years old at the time of the first diagnoses. Each tumor was removed via a craniotomy, and the weight gain immediately became a battle. Now, at the age of 31, she is beginning to experience mobility issues as well as joint and back pain. We had explored the possibility of bariatric surgery a few years ago, but that was before the importance of the vagus nerve was being considered, making the results less attractive. She is once again interested in bariatric surgery, but we don’t know where to begin. We live in Montana and are willing to travel, but as yours is a children’s hospital, am I correct in assuming you do not treat adults? If so, what hospitals/doctors are most experienced in combining bariatric surgery with a partial vagotomy in adult patients?
    Thank you.
    Flora

    Flora Shultes - November 3, 2014 at 12:03 pm Reply
    1. Hello Flora – A member of Dr. Inge’s team is going to reach out to you via email with more information. She’s out of the office until later this week, but will be in touch as soon as she’s back. Thank you for reaching out! -Kate at Cincinnati Children’s

      Kate Setter - November 3, 2014 at 4:55 pm Reply
  8. My 28-year-old son was diagnosed with a pituitary adenoma and had surgery to remove it. Where could he go for treatment for the symptoms that he is now experiencing?

    Debra Wade - November 6, 2014 at 10:35 am Reply
  9. my daughter had a crainopharyngoma tumor removed 2002 has multiple endocrine problems and weight gain is a major problem every check at hospital weight gain we are doing all we can to help her with trying to loose weight reading your articles have gave me a new insight into her condition we live in Ireland is there any hospital in this part of world with an interest in this condition.I feel gastric surgery with vagotomy is a positive option for my daughter.

    Mary Lennom - November 20, 2014 at 4:45 am Reply
  10. my brother was recently diagnosed with what Drs. Believe to be a “benign” tumor on the Pituitary Gland.
    He is scheduled for surgery after Christmas.
    Is this obesity problem an issue in this kind of surgical intervention?

    Suzanne Reisman - December 14, 2014 at 9:05 am Reply
  11. Dr. Inge,
    I would like to know if you believe this could help a patient ten years out from crainopharygnoma surgery. Our daughter was diagnosed and had surgical removal of the tumor and has struggled with multiple issues since. She is now considered morbidly obese and diabetic, and even with daily exercise and careful diet control, cannot lose weight. As well as damage to the pituitary, she also experienced an abscess in the left frontal lobe. We live in Texas, and have aged out of Cook Children’s Medical program, and she now receives treatment with a neurologist and endocrinologist in Tyler. We would appreciate any recommendations you could share.

    Beth Sullivan - December 14, 2014 at 9:01 pm Reply
  12. My daughter is 31, and now weighs around 350 lbs. What is happening to her seems similar to HyOb. Any assistance you can offer would be greatly appreciated. She lives in Phoenix, Arizona.

    Amanda - December 16, 2014 at 11:22 am Reply
  13. Hello,

    My son had a crainopharyngoma tumor removed 11 years ago, he also had a gastric bypass. He is 41yrs old and is obese… my heart breaks for him and feel I feel helpless. I worry about heart attack or stroke… we leave in Pennsylvania… Is there no new treatments available. He has not had his vagus removed… would that be his only option. Is ther any clinical trials in this area of obesity?

    Feeling helpless…
    Marian

    Marian DeRosa - May 1, 2015 at 1:13 pm Reply
    1. Hi Marian,

      I reached out to Dr. Inge and he said that he’s not aware of any studies of this type at this point. He suggests your son contact his primary care doctor or an endocrinologist, as there are weight loss medications for adults that may be worth exploring.

      Rachel Camper - May 4, 2015 at 9:03 am Reply
  14. I have a 23 year old son who was born with Hydrocephalus and has had 3 shunt revisions since birth. During his yearly MRI in 1999 a tumor near the Hypothalamus, Pituitary and Optic Nerve was detected, monitoring it yearly with the MRI’s. At the end of 2002 after having symptoms and detecting during the MRI he had a Chiari Malformation. After this surgery his seizures and SVT’s increased, after a Gran Mal Seizures his physicians decided it was time to remove the tumor. By the time all the pre-test were complete they removed the tumor in 2003. We were told they were unable to remove all of it to prevent damaging the Hypothalamus any more than they had. They treated the remainder with Gama Knife radiation. After these procedures He began gaining excessive weight. We were were told he had quit producing Growth Hormone so he began replacement treatments, he continued gaining weight. After aging out of the children’s hospital his new doctor discontinued the treatments, causing even more weight gain. He works out at the fitness center every day but can not loose and even wakes up in the middle of the night just to eat. We live in Oklahoma City, his primary physician monitors him we are all searching for any help! I have just added him to your registry. My husband and I are determined not to give up to finding him help. Do you know of any physicians with knowledge of this condition near us? Any guidance is appreciated.

    Tracy Clifford - May 12, 2015 at 12:27 am Reply
    1. Hi Tracy,

      I reached out to Dr. Inge and he is not familiar with the providers in Oklahoma. He recommends your son start with his local doctor who may be able to suggest a specialist in your area.

      Rachel Camper - May 18, 2015 at 8:43 am Reply
  15. I am 46 years old and weight 122kg. I had a Craniopharyngioma removed 30 years ago when I was 15 years old. I also had 12 weeks of radiotherapy after surgery. I have been taking thyroxine since the operation and have struggled with my weight constantly. I have probably spent 85% of my life on one diet or another – Weight Watchers, Jenny Craig, Accupuncture, Hypnosis, pills and potions and the list goes on and on. I has bariatric surgery 3 years ago where the surgeon did a sleeve gastrectomy here in New Zealand where I live. … After research I went back to the bariatric surgeon who completed my sleeve gastrectomy and requested a Roux En Y with a vagal truncotomy in light of my new diagnosis (here in NZ you can get the operation funded by the health system as I cannot afford to go private). the surgeon brushed all the research I had gathered aside and refused to do either operation citing that the lack of follow-up research indicated the surgery had no long term effects. He also said the side effects from the vagal truncotomy were not worth the un-founded benefits and there is little difference between the sleeve and Roux En Y process so if the sleeve didn’t work then it is unlikely the Roux En Y would work. Can I ask if you agree with this as I see your website supports the VT and REY procedure. The endocrinologist is now looking at Growth Hormone as an alternative but doubts it will have any effect on my weight and I still have to pass a third test to get the GH funded by the health system. When I found the research on Roux En Y and VG I thought I could finally be fixed, I didn’t have to be broken anymore and I could live a ‘normal’ life. With all the problems I live with every day I just exist – I don’t live. When the bariatric surgeon told me I had to stay broken I cried for 3 days. Please tell me your opinions/suggestions and whether the surgeon I spoke to is correct when he says the surgeries will not work. Thank you

    Tracy Armitage - June 5, 2015 at 2:33 am Reply
    1. Hi Tracy,

      I reached out to Dr. Inge and he recommended working with your endocrinologist to find the right surgeon. He also suggested reading the following study which data shows a better effect of RYGB than the VSG for this population. http://cincinnatichildrensblog.org/wp-content/uploads/2015/06/2013-Bretault-with-suppl-with-calc.pdf

      Rachel Camper - June 8, 2015 at 8:51 am Reply
  16. My daughter hope now almost 14 has gained 125 lbs in three years. We had a carbon monoxide exposure jyst priir to this 700ppm. It may have been lower exposure for awhile as this was right before oyr furnace broke. She started weight gain shortly after…shed also had a couple falls. I mention these things to the various drs. And they all said it had nothing to fo with it. She has had fifty appts in three years. She has seen every speciality at pittsburgh.childrens several times. Shes had five different diets around 1000 cal gained weight on all i ask the drs how can she gain more weight than she eats in calories. They did didcover shes hypothyroid hyperinsulenemia gastroporesis gerd and has mthfr tt genetic mutation. Her synthroid has been therapeutic for twoyears . She is on multiple supplements gor.mthfr as well as cinnamon niacin chromium picolinate garcinia cambrogia with coconut oil. She is on an organic gluten free sugar free diet. No aspartame no chemucals or preservatives eaten on in personal care. She gained 26lbs in six weeks onketogenic diet while ketosing. No sense. Most recent dr thought she hadROHHAD but she doesnt have the ventilation problems does.this sound like HyOb? She goes to philadelphia childrens next month and I wonder if you know anyone there familiar wuth this. She did develop disirdered eating. Starvation after a snall cheat mass exercise etc. Shes counseling. She has rage abd mood issues. Our hands are full any info will help thx.

    april wortman - July 15, 2015 at 12:42 am Reply
  17. Is this only related to this specific tumor (craniophyaryngioma), or any lesion in the center of the brain?

    Michelle - July 15, 2015 at 4:34 pm Reply
  18. Thank you Dr. Inge, We are hopeful.

    april wortman - July 16, 2015 at 5:53 pm Reply
  19. Our daughter who is 16 is going to have her surgery for craniopharyngioma at st.jude in the next few months. One of our biggest fear(there are many) is damaging the hypothalamus. The drs are hoping that the cyst will just peel off but in case that doesn’t work they will deflate them and then do proton radiation. My question to you is, what can we do right after surgery besides diet to watch for weight gain…is there any new medicines out there that we can do from the very beginning before it gets to far ahead of us?

    patty Ryan - July 19, 2015 at 2:46 pm Reply
  20. My son had surgery for craniopharyngioma June 2014 at Lucile Packard children’s hospital. He was 90 pounds at the time. Now, just over one year later, he is 170 and still gaining. We are working closely with LPCH weight management team, endocrinologist, and neurosurgery, but have not been able to even slow down the weight gain, which is seriously impacting his health, self esteem, and general lifestyle. It is very frustrating for my son and the whole family, and all I’ve been able to get through my research is that there’s little to no hope.
    Is there any support group to help?

    Terry Betts - September 26, 2015 at 2:25 pm Reply
    1. Hi Terry,

      Not sure where you’re located, but our Surgical Weight Loss Program for Teens does have a support group for patients. Here’s some more information: http://www.cincinnatichildrens.org/service/s/weight-loss/patients/support/

      Rachel Camper - December 10, 2015 at 10:27 am Reply
  21. My son had surgery at LPCH, Stanford, Ca, for craniopharyngioma June 2014 at 9 yrs old. Prior to surgery he weighed 80 lbs, and now weighs 180 and still gaining. He is going to have a staple inserted into his leg to correct bowing of the femure, and is having a very difficult time exercising and even just walking. We are afraid of additional health risks, as well as the negative dynamics that is happening in our family. More and more it seems as if there is no hope.

    Terry Betts - October 16, 2015 at 5:36 pm Reply
  22. Tracy Jones: we are in the same frustrating situation, in little over a year and a half my 10 year old son has gained over 100 pounds. He now has to have surgery to correct severe bow-leggedness, but that will not be an immediate help. He cannot walk for any length of time, and has not been able to attend many school functions- field trips, science camp, etc. So far, all I’ve gotten from the experts are the same as you: control food intake. ??? This is only resulting in constant battles and food obsession… I have actually had to lock up one cupboard because whole boxes of cheerio and jars of peanut butter were disappearing.
    Sorry for ranting, but please, believe me you are not alone. Keep digging, keep insisting on seeing other experts, keep hoping. And, if you can, keep us informed of anything you find…we may be few, but are all looking for the same answers.
    Terry
    Bettbiz@aol.com

    Terry Betts - December 11, 2015 at 11:56 am Reply
  23. Our son had his craniophrangioma fully resected in 2012 with radiation this year for a recurrence. He is now 165 lbs in spite of controlling food intake. He is 12. He is starting growth hormones now. When would this surgery be indicated for him? Are you tracking long term outcomes?

    Sherry Fox - December 12, 2015 at 2:18 pm Reply
    1. Hi Sherry,

      Our clinical team sympathizes with what your son and family are currently experiencing. They feel that aggressive measures should be taken to avoid major complications of obesity in children with craniopharyngioma. Typically they begin consideration of weight loss surgery at a BMI of 35. This would be about 180 pounds for a typical 5 food tall 12 year old.

      They would be happy to discuss this further by calling 513-636-8585 to speak with Linda Kollar, PNP or 513-636-9215 (Penni Taylor) to schedule a time to speak with Dr. Inge.

      Rachel Camper - December 14, 2015 at 9:06 am Reply
  24. Hello my son had a craniopharyngioma removed 6 months ago and has no pituitary function now. He put on weight quickly for the 4 months prior to diagnosis and surgery and went from a skinny little thing to being overweight. He is 130cm, 33kg. He has not gained any weight in the 6 months post surgery. We monitor his diet very carefully. He is an identical twin and is 12 cm shorter but the same weight as his brother. I was wondering if he hasn’t gained weight yet is it likely that HO won’t be a problem? Or can it come on later? No one can give us much advice on it as we are through a small hospital. Thanks

    Leah - January 3, 2016 at 3:05 pm Reply
    1. Hi Leah,

      I reached out to Dr. Inge and he said that it is difficult to know this early but if his doctors note his BMI climbing above the 95th percentile that could be a sign that more aggressive steps have to be taken. Please feel free to contact us if you find yourself in that position. 513-636-4453 or penni.taylor@cchmc.org. Web page with more information: http://www.cincinnatichildrens.org/service/s/weight-loss/default/

      Rachel Camper - January 5, 2016 at 10:10 am Reply
  25. Aloha,
    I am Mrs G. My son was 34lbs at that age before removing his first tumor at the age of 4, then second tumor at age 5 behind the left optic nerve causing him to lose left side vision. 6 months later third surgery removal of pituitary gland complete. Then He had ear tubes, removal of his tonsils, He was sick all the time. Visit the hospital mostly twice a month. 2 years ago surgery of frontal sinusitis with no nasal passage. 1 year ago he had a kidney failure medical vac to Honolulu. 1 month before school end he had sinus infection stayed home. June 6 of 2015 he fractured 3 places in left ankle had to use a cast for 2 months. July 27, 2015 got sick stayed in hospital for 3 days. Remodeled his room so he doesn’t get sick. Now he is 15 1/2 years old and he gained almost 305lbs. He hates school, his life being overweight, He thinks kids teasing him, he said he has no friends in school, playing sports makes him get sore with body aches, feet & leg pain. Every time his sick. And he always gets headache a lot. Do you think that the surgery would help! What should I do!

    Uilani G. - January 5, 2016 at 2:15 am Reply
    1. Hi Mrs G,

      Please contact our Surgical Weight Loss Program for Teens to see how they might be able to assist your son: Toll Free: 800-344-2462, ext. 4453 or penni.taylor@cchmc.org. Here is our webpage with more information: http://www.cincinnatichildrens.org/service/s/weight-loss/default/

      Rachel Camper - January 5, 2016 at 10:32 am Reply

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