Hypothalamic Obesity: Miscommunication Between Brain, Gut

17 miscommunication between brain adn gut

Alexis Shapiro’s story caught the attention of many people from around the country, including news outlets, generous individuals who wanted to help change the outcome, and those who were curious to learn more about the complex biological condition that caused her to gain excessive amounts of weight despite every attempt from her, her family, and her doctors to stop it.

While this one story has been told by many national news outlets, what hasn’t been covered in detail is how this condition known as hypothalamic obesity (HyOb for short) causes massive and rapid weight gain and how stomach surgery called gastric bypass may help people with this condition.

HyOb is a complex, biological condition which can result from the growth of a rare brain tumor called a craniopharyngioma. This type of tumor and/or the surgery to remove it damages the hypothalamus, which can have a dramatic effect on appetite and weight regulation. In fact, about 50% of patients with intracranial tumors like craniopharyngioma go on to develop HyOb.

The brain has the task of regulating an enormous number of processes every day, some that we are aware of (for instance, talking and walking) and some that we are not (body temperature, maintaining a normal weight). For weight regulation, a tiny part of the brain called the hypothalamus provides signals to the gut and other parts of the body, and gets back signals from the gut and from fat cells. They send signals back and forth, informing the other of hunger, fullness, and when to stop eating.

This process of proper communication about supply and demand between the brain and gut is about 99.8% accurate, allowing most (adults) to eat and burn almost the exact same number of calories every day and keep a reasonably constant weight. But for patients with HyOb, the communication between the brain and the gut goes haywire.

The hypothalamus controls many bodily functions that we consider automatic, including how many calories we take in per day and how many we burn. When the hypothalamus has been damaged, it no longer has the ability to regulate body weight, in part due to excess stimulation of insulin production.

Excess insulin increases appetite, causes irritability and weight gain regardless of strict dietary intake and exercise. Another important aspect of HyOb is the fact that the hypothalamus does not “hear” the signal that comes from the fat (a hormone called leptin) which is supposed to tell the hypothalamus to turn off “hunger.” Since the hypothalamus is resistant to the leptin signal, the person with HyOb continues to be hungry, continues to eat (a term called hyperphagia), continues to store the food eaten as fat, and never feels full.

This vicious cycle repeats every day as more and more weight is gained. The typical locations for safe storage of fat (for instance, beneath the skin) are eventually overwhelmed and then the body begins to store it in other places that are more harmful to health (in the muscles, liver, and around other important organs in the belly). With this excess fat being tucked into all of these important organs, they can’t do their jobs right and the net result is poor functioning and even inflammation in many of the body’s vital organs.

People with HyOb constantly feel like they’re starving and can gain upwards of 1-2 pounds per week even though they try to maintain calorie-restricted diets and exercise routines.

So what can be done for patients with hypothalamic obesity? Our Surgical Weight Loss Program for Teens and similar treatment programs at other hospitals have found that gastric bypass can be a successful measure for controlling hunger in patients with HyOb and for getting control of the weight gain. In addition to gastric bypass, we also consider a partial vagotomy (surgical removal of the vagus nerve). The vagus nerve is thought to transmit the powerful signals from the brain to the pancreas, which in the case of HyOb, results in excess insulin production. A vagotomony cuts the nerve and removes a portion of it, thereby interrupting these insulin production signals.

Together, bartiatric surgery and vagotomy alter the communication between the gut hormones, the autonomic nervous system, and the brain circuitry regulating hunger and energy balance. Interference with the vagus nerve signaling reduces communication from the central nervous system to the pancreas, which slows insulin production in response to meals.

We have found that patients undergoing these laparoscopic procedures have not only experienced weight loss, but also a reduction in other associated medical issues, such as reduced insulin and early reduction in leptin levels.

The results our patients have experienced are similar to the findings of a study that took place in Europe, in which I also participated. We reviewed 21 cases worldwide of patients undergoing bariatric surgery following surgical treatment for craniopharyngioma. This study was done to try to summarize the 12-month post-surgical outcomes for each of these patients that had been published. When the results were combined, average weight loss per person totaled 79 pounds 12 months after surgery.

But it’s important to keep in mind that bariatric surgery isn’t an option for everyone. In fact, it is only recommended in cases in which health is adversely affected and all other weight-loss measures have been attempted.

Patients with hypothalamic obesity fight many uphill battles associated with the disease. Not only are they trying to manage their uncontrollable weight gain, but they are often fighting the painful stigma, teasing, and ridicule that goes along with the disease.

They do not lack willpower, motivation, initiative, or discipline; in fact they have more drive and desire to lose weight and control their food intake than most people! Yet they face an overwhelming amount of obesity prejudice, based on the feeling that if they only stuck to their prescribed diets and recommended exercise routines, they could lose weight on their own. This can lead to isolation and regression from school, friends, and participating in activities that used to bring them joy.

We want patients to know that they are not alone and they are not to blame for their condition. Medical science tells us that hypothalamic obesity is a biological condition which causes miscommunication between the brain and the gut.

Because HyOb is so rare, we have started an online patient registry. It was established to increase awareness, facilitate future research, and improve treatment of this disorder. If you or someone you know has the disease, please pass the link along to them and share this post to help spread awareness.

Editor’s note: In the picture at the top of the blog post, a teen who received gastric bypass surgery at Cincinnati Children’s has the following quote on her wrist,”Be kinder than necessary because everyone is fighting some kind of battle.”

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.

Write a comment

Your data will be safe! Your e-mail address will not be published. Also other data will not be shared with third person. Required fields marked as *


  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. Cade Larsen March 31, 18:06
    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.
    • Dan Gallagher June 16, 10:18
      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.
    • Tracy Jones September 16, 20:20
      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.
  3. Rachel June 18, 22:49
    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.
  4. cara September 16, 21:43
    is the symptom always extreme hunger? I am not hungry or eating more but still gaining after surgery.
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author September 22, 15:10
      Hi Cara, After surgery to remove the craniopharyngioma, about half of patients develop obesity and eating disorders. The exact cause of weight gain is not known but all are not related to having extreme hunger. Some of the theories include: • damage to the part of the hypothalamus that makes us feel full • over production of insulin • changes in food intake regulating hormones • changes to the brain that cause low energy and less physical activity
  5. Stephanie Rowe October 07, 06:17
    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
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author October 07, 13:53
      Dear Stephanie, Your questions are very good and understandable. The best data that we have about the longer term outcomes was published last year (Bretault M, Boillot A, Muzard L, Poitou C, Oppert JM, Barsamian C, Gatta B, Müller H, Weismann D, Rottembourg D, Inge T, Veyrie N, Carette C, Czernichow S. Bariatric surgery following treatment for craniopharyngioma: a systematic review and individual-level data meta-analysis. Journal of Clinical Endocrinology Metabolism). As a coauthor of the paper, it is available upon personal request to me (thomas.inge@cchmc.org). Patients who underwent gastric bypass tended to do better long term than patients who underwent banding and sleeve gastrectomy in this analysis. Your assumption that early intervention is better than waiting until extreme obesity is also likely correct. But the optimal timing of surgery, taking into account the potential problems with operating on the very young child, is not yet well understood. Most operations in the pediatric age group have been done in teenagers at this point in time. Nutritional and other adverse effects have been described. We would be happy to consult and evaluate your niece. Information about how to make an appointment is posted at www.cchmc.org/weight Warmest regards, Tom Inge, MD, PhD
  6. Kelli October 19, 00:03
    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?
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author November 17, 08:38
      Hi Kelli, There are experienced people at University of Penn including including Drs. David Sarwer and Tom Wadden. They are psychologists who treat obese patients and work closely with surgeons. Might be worth contacting them to see how they might be able to help. All my best,
  7. Flora Shultes November 03, 12:03
    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
    • Kate Setter
      Kate Setter November 03, 16:55
      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
  8. Debra Wade November 06, 10:35
    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?
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author November 13, 14:20
      Hi Debra, We do treat patients within your son's age range and would be happy to speak with him. He can contact us at 513-636-4453 or email penni.taylor@cchmc.org.
  9. Mary Lennom November 20, 04:45
    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.
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author November 21, 14:19
      Hi Mary, Yes, Francesco Rubino is a world’s expert in the use of surgery for metabolic disease in adults and he is at King’s College in London. http://www.kcl.ac.uk/lsm/research/divisions/dns/about/people/Profiles/francescorubino.aspx But if you are not in the U.K. part of Ireland, a local non-surgeon expert in bariatric surgery at University College Dublin would be able to make a recommendation for help there in Ireland as well. His name is Carel LeRoux. http://www.ucd.ie/medicine/lifewithus/ourpeople/featuredstaff/professorcarelleroux/ Hope this helps!
  10. Suzanne Reisman December 14, 09:05
    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?
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author December 16, 14:48
      Hi Suzanne, thank you for your inquiry and we are hopeful that the surgery is a success. It would be difficult for me to advise you without all of the specific information your local medical providers have. I recommend that you specifically ask them whether or not the surgery is expected to have hormonal effects or effects on hunger.
  11. Beth Sullivan December 14, 21:01
    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.
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author December 16, 14:50
      Hi Beth, we understand the struggles she is having. Before we could make any particular recommendations, we would need a bit more information about her history and condition. Please contact Cassandra McDaniel (Cassandra.McDaniel@cchmc.org), our program coordinator, by email who can forward you a questionnaire. Also please visit www.irhod.org for more information.
  12. Amanda December 16, 11:22
    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.
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author December 16, 15:26
      Hi Amanda, without access to her medical records, it would be difficult for me to say. However, unless your daughter has had brain surgery and requires daily endocrine replacement medications, it is likely not hypothalamic obesity. There are excellent weight loss surgeons in Phoenix, Arizona, with whom she could potentially speak to about treatment options.
  13. Marian DeRosa May 01, 13:13
    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
    • Rachel Camper
      Rachel Camper May 04, 09:03
      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.
  14. Tracy Clifford May 12, 00:27
    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.
    • Rachel Camper
      Rachel Camper May 18, 08:43
      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.
  15. Tracy Armitage June 05, 02:33
    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
    • Rachel Camper
      Rachel Camper June 08, 08:51
      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
  16. april wortman July 15, 00:42
    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.
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author July 16, 08:56
      Hi April, Thanks for reaching out to us. It sounds like your daughter has a lot of complex issues happening currently. I do feel like she is in good hands at CHOP.
  17. Michelle July 15, 16:34
    Is this only related to this specific tumor (craniophyaryngioma), or any lesion in the center of the brain?
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author July 17, 09:40
      Hi Michelle, Yes, the information written in this blog post pertains to craniopharyngiomas. Hope this helps. Thanks,
  18. april wortman July 16, 17:53
    Thank you Dr. Inge, We are hopeful.
  19. patty Ryan July 19, 14:46
    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?
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author July 21, 08:41
      Hi Patty, Your daughter is in good hands at St. Jude and I would recommend discussing her post-operative regimen with her care team, as they are the best positioned to make those kinds of recommendations.
  20. Terry Betts September 26, 14:25
    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?
    • Rachel Camper
      Rachel Camper December 10, 10:27
      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/
  21. Terry Betts October 16, 17:36
    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.
  22. Terry Betts December 11, 11:56
    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
  23. Sherry Fox December 12, 14:18
    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?
    • Rachel Camper
      Rachel Camper December 14, 09:06
      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.
  24. Leah January 03, 15:05
    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
    • Rachel Camper
      Rachel Camper January 05, 10:10
      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/
  25. Uilani G. January 05, 02:15
    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!
    • Rachel Camper
      Rachel Camper January 05, 10:32
      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/
  26. Dorrie March 29, 23:50
    The article above is me - except I'm a 51 year old female who has been hungry 24/7 for 4 YEARS!!! I've gained in excess of 50 pounds and there's no end in sight. I met a "world-renowned" gastroenterologist (GI issues) but brought up my chronic hunger, thinking - I'm at THE Mayo Clinic. Unfortunately, that physician never heard of someone with an insatiable appetite, ravenous 24/7. I also saw doctors at Loyola & Northwestern - they've either never heard of such a condition or have no way to treat it. The last doc at Northwestern did give me the hypothalamus connection. It's taken me all this time to find something, anything online to prove I'm not losing my mind. I no longer talk about it but when I had in the past, people would look at me as if I were nuts, I questioned myself but I know it's real. Is there any possible chance you can refer me to a doc in the Chicago area that treats adults with this condition?
    • Thomas Inge, MD, PhD
      Thomas Inge, MD, PhD Author March 31, 11:04
      Hi Dorrie, I recommend reaching out to Dr. Kushner's group to see how they might be able to help: http://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=11686
  27. Jennifer April 27, 22:30
    My son is almost 18 and has this above name condition. He is scheduled for Bariatric surgery in July 2016. The question has arisen for patients with hormone deficiency which procedure is more effective the "sleeve" or "bypass". Since my sons condition is so rare I have one physician stating try the s"sleeve" and 2yrs from now if need be return for the "bypass". I have another surgeon stating that with this condition "bypass" is the better option. Looking to see what others have experienced who have this medical condition. Thanks.