Adrenoleukodystrophy treatment in 14 Oncology clinics in United States

Dr. Bartlett and his staff were timely, professional, and courteous. The procedure was performed flawlessly and he kept the mood positive and humorous.

Want to give a shout out to the nurses and staff on the 17th floor. I was briefly there this past Thursday to pick up my uncle Juan who received treatment. It felt very welcoming and calm on the floor. I am assuming that they were nurses (I apologize if they’re not) as they were sitting in the central location and also running around taking care of patients. When we asked for a wheelchairs, they processed the request with a smile. One of the folks even asked how my day was going and asked about the Buffalo Bills. I know this may sound small but it’s the little things that can make a difference. I had some anxiety coming to visit and was exhausted from my 8 hour drive to get here, but all that went away when I entered the 17th floor of this hospital.

The nurses, admin team, patient care team I have no complaints about. I dread thinking how the doctors here have handled my Dads care since the very beginning of his AML diagnosis in April. To begin when he was initially admitted, he received his chemo and was discharged with oral meds that he was told to keep taking upon going home. Doing some basic internet research we discovered he was taking the meds for 20 days longer than he was supposed to. We had a teledoc visit with his doctor, she described it as a “misscommunication” and that he indeed took it weeks longer than he was supposed to. Also during this period, he was doing outpatient in New Jersey and never had any follow up from his doctor until weeks after discharge his initial diagnosis. I do not think this is standard. He was discharged with no Oncology follow ups scheduled or anything. When we finally did talk to his Doctor she said to move to a clinical trial that had not been successful on anyone, nor was it even available. She gave him more chemo that did not make any progress towards treating his disease. To say she was hands off is an understatement. I personally messaged about clinical trials that had success with patients with similar diagnosis and subtypes. We were told to reach out to hospitals that had them while she continuously kept stringing my father along without any real plan besides what was already not working. I asked about transplants she said it could kill him, now they have no viable plan as the chemo and lung issues (related) are too much to overcome. I continue to seek treatments for him. In short, I feel like we experienced a 1980s treatment plan, with no creativity or critical thinking applied to treating my Dad. He is a number to (most) of the doctors. They also will scheduled him for blood transfusions once a week on outpatient when he got them daily in the hospital. Extremely frustrating. Their bedside manner was also… abysmal. Offered little hope this whole time and didnt give confidence to other centers that would have been more capable in treating him. I would not recommend MSKCC and wished he went somewhere like Mayo or MD Anderson. Maybe they can be helpful for more straightforward treatment plans, but my Dad has a very rare subtype that made it complicated. Several doctors come off as thinking they are the end all be all of what is known about my father’s disease. Newsflash - we’re all capable of reading studies that show efficacy of treatments but your heads are too far up your own you know wheres to listen to family. They also give off a vibe of thinking they are the Almighty as well and it breaks my heart to see how they spoke to him and how it affects his mood, graces, and personal outlook.

Majority of our experience here has been great, however since we spend most of our time in the Nicu with our baby boy, you would think that the nurses who are watching them follow some type of guide to respectfully work quietly so that the babies who needs rest can rest peacefully, but no! That’s not the case, they gossip out loud with one another, they slam drawers, trash lids, and more. Our kid has a heart condition so resting is the best thing for him to get him where he needs to be for his surgery. He is always startled or woken up by all of the noises going on. All I ask is that you guys respect the needs of the kids who needs to rest and try not to make so much noise or talk so loud, especially if is just about gossip. Thanks

UCLA should be ashamed to call itself a hospital . I placed a negative review of UCLA, Ronald Reagan Hospital A few days ago and I see it it has been removed. First of all upon my arrival at the ER, after requesting That all of my doctors be within my network I was told by the person checking me in ( cold As a bottom of a rock ) it is against the law for him to tell me if the doctors are within network. Which I know is against the law in California. This place is basically not any better, and has lower standards than any Third World country hospital. If I was able to give it a zero or even minus I would. There was basically a dozen seats in the ER for waiting so as you are exposed to any illness. I was seen after five hours for a heart problem There is nowhere to charge your phone, so as to keep in touch with loved ones. People are spread out and strewn throughout the hallways ( including tents, just outside the ER ) with no privacy and total humiliation. The ER is full of homeless, looking for a place to sleep. I will continue to post continuously, until my experience is not deleted. If you have or care for your loved ones, do not bring them here like I said, this is below third world healthcare standards

I gave birth to my daughter here in early 2022 & will be giving birth here in early 2024. I wouldn’t want to go anywhere else for OB care. I live in Tarzana so the drive while in labor was not fun & I could have gone to a much closer hospital but I trust UCLA Westwood more than any other ER/OB department & can’t imagine having gone elsewhere. The labor & delivery nurses are compassionate, informative & kind. My Dr. Is Dr. Zapata but she wasn’t on call when I gave birth so I saw another Dr, so sorry I don’t remember her name, but she was amazing and I felt in very capable & caring hands. I recommend this hospital for anyone I know who’s pregnancy for maternal & postpartum care. I’m very surprised the rating isn’t higher as overall the doctors are wonderful, up to date, the nurses are very capable & always warm in my experience. Also, it’s such a well maintained campus with updated equipment & very clean overall.

Have been passed around from test to test for 3 months trying to get clearance for surgery without any treatment for my condition. Seems like all they want to do is test and not treat problems. Impossible to contact doctors offices by phone. Ordered tests without telling me. Asked for referral to hand surgeon and they sent me to shoulder specialist. Asked for referral to ear doctor and they sent me to throat doctor. Did multiple tests on heart and all good but they are ordering more tests. Think they are more interested in generating revenue than healthcare

My first bad experience, I have been admitted here several times and my stay had always been good, until today that I already have 6 days admitted with my son here we had a double room where the first nights I was touched by very decent and respectful people, the last two nights I have been touched by a couple with their son who leave the light on until late at night, they spend the day in phone calls and with a very inadequate tone of voice, the husband stays to sleep and has an awful snoring because those that are very difficult For me and my baby to have rest time! I talked to the manager who didn't do anything, I don't talk to people or take the delicacy to even see if she could move us to another room I don't care if it was with another person maybe they weren't as indecent as these which the sick people have told her that please if they can keep their composure and they don't even change! The truth is that I would have liked to have another person to help me and be more condescending with the situation, because I have seen empty rooms since last night even double, but according to the person I spoke they were not available! I'm still here and I can't take a break! As a hospital you need to put some rules like do not let man stay at least in double bedrooms, do not permit loudly noise in the room and for the residents on the rooms to keep respect to others and peaceful space appropriate for recovering!

My sister had surgery at Columbia Presbyterian Hospital. Her surgeon called me at 11:14 to report that she was out of surgery, and that the recovery room staff would be in touch when we could see her. I did not hear from the recovery room, so I called them. The desk clerk rudely told me that the nurse would call. It is now 2:50 - almost 4 hours since my sister left the OR, and I still have not heard a thing from the recovery room nurse. It is inexcusable to treat family members in this way. In addition - they have a one way texting app for communicating with family members - useless, apparently, because they don't use it. I understand nurses can be extremely busy, but it only takes seconds to communicate to worried, waiting loved ones.

Couldn't visit my grandpa in the emergency room. I drove an hour to get here and then they tell me there is a 2 visitor limit. There is little to no reception in the building so I couldn't even get in contact with who was in there. I called into the room and when I asked about someone leaving she pretended I didn't even talk to her and went mhm mhm and hung up. I love hospitals that won't let a grandson see his grandfather in the ER

I am deeply thankful for the exceptional care and attention I received during my recent visit to the emergency department at Brigham and Women's Hospital. The doctors and nurses demonstrated genuine concern and provided excellent care for my difficulty swallowing, gastric issues, and rapid weight loss. Their professionalism and compassion made a significant difference during a challenging time. I want to express my sincere gratitude to the entire medical team for their dedication and outstanding support. Thank you for helping me through this health concern with such skill and kindness.

During my dad's ICU stay at Brigham and Women's Hospital, the nurses provided outstanding care. They kept us informed and made us feel safe throughout a traumatic time for our family. The level of expertise, compassion, and seamless coordination between day and night shifts was remarkable. My family and I will be forever grateful for Nurse Bryan, Katie, Kayla, and Lauren from Unit 3B.

My experience with the staff was a very special and good one of course there were a couple of not so greats but as a whole I totally appreciated the experience and staff!

My wife and I welcomed our first child with John Hopskins and we were treated exceptionally. Our stay lasted 6 days. Nearly every member of the staff seemed to truly believe in the work they were doing and it instilled confidence in my wife and I. The student nurses were very helpful and what they may have lacked in experience they made up for in drive and enthusiasm! Two of the nurses, who helped my wife in labour, even visited us the next day to congratulate us and check up on the status of our child. It did get busy for the nurses the last few days and we would love to have seen more lactation specialists on staff available to help us but after this incredible experience I will certainly encourage my wife and other parents to include John Hospkins in future family planning.

We had a very nice experience here. Dr Kuwera and staff took perfect care of our toddler. He was competent, thorough and friendly-explaining everything as he went. It’s a large hospital, but with many helpful staff stations throughout, it’s easy enough to find your way around. Must register before entering, which ensures safety. Very thankful for wonderful healthcare.

You will roll the dice with anesthesiologists at this facility. I was "assigned" Dr. Traylor. A freakishly large, imposing and intimidating man with zero resemblance of care or compassion. I'm sure he chose this field because no one would EVER seek his services. His patients haven't a choice. He suggested a female doctor. Best suggestion he's ever made. In walks Dr. Sarah Cocoma complete with a raging eye infection. This woman SNUCK behind my bed, DISTRACTED me and FORCEFULLY shot VERSED in my IV. It burns given gently. To render me unconscious, without asking, warning or care. Filthy conditions in every area including the elevators. Stay away from the trauma this place leaves behind. You've been dutifully warned.

The worst communication. Terrible gaslighting. The INEXCUSABLE FILTH in this facility. It was everywhere. The waiting room, the bathrooms, the hall was littered with garbage type red biohazard bags. Even INSIDE my Operating Room...garbage on the floor. When I objected to what I was seeing, they promptly canceled my surgery. I couldn't get out of that place fast enough...but not before one last gross show of filth, the floor of the elevator was littered with 2x2 gauze pads...soaked in something orange. I quickly pointed it out to my husband so he can see for himself what I was trying to describe. He quickly understood as an employee's foot was standing over some ofthem. My biggest fears were handled BEAUTIFULLY by this pre-surg staff, they are willing, if able, to accommodate women patients with women doctors/ residents...they allow small gestures of modesty and that is commendable. And just so you know...all those personal questions they ask you? And all the personal questions you ask them? EVERYONE CAN HEAR YOU...as there only curtains for privacy. HIPAA laws must be out back on a smoke break with the 3 janitors this place employs. 2 thumbs down and shame on you.

Had a good experience. Brought my father in law into Rush to be evaluated from stroke he had 3 weeks ago. They had him in a bed in less than 30 min. He was admitted and put into their stroke rehab program in less than a week.

Easily the most efficient medical facility I have ever stepped foot in. Everyone is friendly and professional…the campus is a very nice place to spend time if you have to spend the whole day for a bunch of testing. Food service has recently been revamped and has dramatically improved. When you consider the volume of people seeking specialized medical care IN ADDITION TO a very active ER, I find it is nearly miraculous that I have never waited more than 15 minutes past my scheduled appointment time to see my Dr, and that is coming twice a year for the last 7 years. Not once…

Amazing experience at Mayo Clinic Jacksonville!! After three trips to our local ER all resulting in an undiagnosable abdominal pain and seeing literally one dozen doctors, we were blessed with a referral to Mayo Clinic and my husband was healed!!!!! No more prescriptions! No more weight loss! No more issue! They found the problem on the first visit, had it removed three weeks later and no more pain praise God!!!!! Thank you to the entire staff from the gentleman at the entrance with his cheerful greetings to the kitchen staff who keep even the most grumpiest of patients happy and fed we appreciate all of you there at Mayo!! Thank you from my family to yours!

The ER/ED staff is dismissive, taking forever to treat patients. I have been sitting in this damn hallway for 5 hours. Yes they have ran tests, no medication to treat any of my symptoms. Trying to discharge after doing nothing… Had to CRY to the doctor about how I felt my care wasn’t up to standard and then she eventually gives me meds. Mind you. After 5 hours. Thought Mayo was one of the best hospitals in the south. Will never be back.

Dealt with this hospital for several years. No matter what day or what doctor I've always been left with the same experience; cocky doctors playing God with the absolute worst bedside manner. Never again.

My husband was a heart transplant patient here. One time they failed to give an accurate report for him to adjust his warfarin accordingly. Subsequently he suffered a stroke and had to have intracerebral hemorrhage surgery. My husband overlooked a lot of things and this hospital had the nerve to kick him off the transplant list. They called an old number and then said that since they couldn't get in touch with him he was non-complaint. I gathered so much proof to show that they were the ones who made an error. I got all the phone records and proof that we updated his information but it was evident that they just wanted to get rid of him. I wanted to sue so bad but I left them all to God. You should have been in that break up meeting. By the grace of God he got his transplant at an excellent hospital in CA.

Lynn at the gift shop was extremely helpful and made ordering flowers a seamless process. She was so kind and patient too. Thank you Lynn!

We were at Vanderbilt before transferring to Mayo. This has been an amazing experience! It’s like it’s a requirement is to be super nice; Vanderbilt, not so much. I would recommend anyone to come here, and I’m so glad we chose to switch. The doctors, nurses, and even the staff (cafeteria, welcome center, etc) were by far nicer than Vanderbilt. They are so knowledgeable, thorough, and patient. Very impressed!!!

The Mayo Clinic is such a special place! It’s a medical facility that could also be a museum of art museum, history, and architecture. People travel from all over the world to be treated here, but what makes it truly special are the compassionate, skilled, and dedicated employees. I stood outside the Mayo Building and watched bus after bus pull up to the staff entrance - and watched countless everyday heroes get off those buses and go to work performing “miracles” at a place that provides hope to people who need it most.!!

I had 7 uterine fibroids removed by Dr Khan. Well done. No complications. After six weeks I was back in gym doing great. Dr khan is the best. Great doctor. Nurse Logan day shift and Susan night took good care of me.!!

I'm currently here and I can tell you this place is a sad example of a hospital nurses are not interested in taking care of people they see how fast they can get out your room you going to be room up with someone and you have to watch out for each other the doctors are dumb all they do is tests and hope they find something and they wait until something bad is about to happen before you get any treatment had better treatment in smaller hospitals pass on this place they just in it for the money also food is bad nothing good please save your money. Place is like a burning trashcan.

The Cleveland Clinic is a different breed of hospital from the others I’ve been in. Everyone who participated in my care was thoughtful, well trained, and skillful. They’re a hub for up-to-date practices & medical knowledge. And the practitioners have exceptional levels of experience earned through high volumes of cases. Importantly, the staff seem well supported. So many members of staff went above & beyond. The cleaning staff made an origami elephant out of a towel when I first got there. The dining staff tailored meals for my specific needs and made a surprise cake for my birthday. Transport held good conversations while easily navigating. Nurses, technicians, etc adapted to limiting check-ins/procedures to the certain hours when I asked (to protect sleep). There’s museum quality art on nearly all the walls (good incentive to go on walks in the halls) and nice facilities. There were some bureaucratic challenges when I was first admitted, but in spite of that, I still evangelize to friends & relatives all the time - if you need more serious care, go to the Cleveland Clinic.

This place is a gift from above. It’s absolutely amazing how they put together the teams and staff that they have. My surgeon Dr. Faisal Bakaeen gave me a bypass (CABG) surgery and I cannot thank him enough. His team, the nurses and staff in this hospital from the emergency room to step-down are honestly the nicest people I have ever met in a hospital. They truly care and will not let you leave if your problems are not solved. This place is the real deal, don’t hesitate to get there opinion, I’m so glad that I did. Thank you Dr Bakaeen, you save my life and I will never forget you…

Very positive experience. Dr Davies was extremely professional, listened to my concerns, reviewed and explained the MRI and dedicated the necessary time without being rushed. Very pleased with him and all his staff from scheduling, checking-in, radiologists, nurses and doctor assistant. 👍🏻

Went in for a full left hip replacement with Dr Jacob Drew. My interactions with him and his staff were always positive. He took the time to explain the procedure and answer any questions that I had. He even called to check in the night before my surgery. I would highly recommend him for anyone needing a hip or knee replacement.

Great Doctor and Staff to work with. Removed my cancer and still cancer free 3 years later. Extremely helpful and has answered all my questions and then some. She is a doctor who actually cares about her patients unlike my PCP . I would Highly Recommend Dr Megan E. Anderson and her staff.

We unfortunately had a five night stay at the NICU over the Thanksgiving holiday. The staff provided excellent care to our kid and were extremely compassionate to us as parents. We were grateful for the private sleep rooms and shower, and they even had a free Thanksgiving dinner for everyone. The parent / family lounges have places to grab coffee and store food, and everything is very clean and organized. The doctors and nurses were very communicative and kept us in the loop the entire time.

Absolute terrible service , my child who has a seizure disorder and potential c- diff was made to wait in the ER for 3 and half hours plus without even being properly triaged . She didn’t receive a wrist band , at any point & we can run the cameras back , no one was alerted to her allergies , there was no band received for that as it typically is .. and she begin to have diarrhea thru the long wait due to the virus she’s had the past week and in turn she begin to get worked up and her fever returned . I asked how much longer the wait would be abd for an approximate timeline .. as I’ve observed plenty of patents come in after one in which I knew personally with less servere circumstances… literally come and go and my child was still suffering in the ER … the Nurse on duty was unaccomidating and almost seemingly unwilling to engage .. as I waited for some kind of answer on when my severely sick child would be seen . I asked if it would be more then another 30 mins and he said he couldn’t promise but shouldn’t be . Well it was . After 45 mins of them calling more then 3 patients who arrived after us .. I reluctantly decided it best to take my fevering , baby who now was covered in feces home.. as she was in her 3rd bowel movement and we had difficulty changing her in the nasty public restroom . I ultimately watched them call two more patients who had come after us exhibiting no signs of eminite health scares then I ordered our ride so I could take my child home to change her and give her medicine to help reduce fever and prevent seizure . I am pissed and very upset that my child and I spent. 3 plus hours we can’t get back in the ER after already being across the street at the Berger building for 3 hours prior this was wayy less then pleasant This is the second poor experience in this particular Emergency Dept but this is the first time it was so horribly handled that I had to leave with not only an even sicker baby then I arrived with . She still now will have to go to another ER to be seen .. because she did infact have a seizure once we got home from her fever that arose& I informed them but that did nothing to medicate the situation or get her seen. Now my kid is home fevering still sick potentially has c-diff and I am skeptical to return her to this terrible hospital because they haven’t even returned my call. I called to speak with charge nurse after filing formal complaint and was told by Jennifer in WR I could not speak to any charge nurse and then she took my information and said a nurse on duty would call back and it’s been an hour with out a returned call. This is negligence and unprofessionalism tht promoted us to leave in the first place and CHOP is looking at a pretty decent lawsuit if we do go to another practice and something is severely wrong with my child with so much documented instances of me trying to get her helper seen and have a team leader consult about next steps. This place wasted my time , cash as it’s costed money I didn’t have to travel to and from and I felt like the poor treatment was racially motivated , as as kid who came in after us was pulled to the back cuz her mother told them she was seizing but I was looking at the child. Who literally just had woke out her sleep. This place is incompetent , and of all the amazing experiences we’ve had here . Today ultimately casted a shadow on them all and I will be contacting the PA board of insurance aswell to file a formal complaint because they need to do better on managing and transparency in the ER wait times. We got there at 12:15 and didn’t receive a text saying my child’s room was ready until 4:15 pm that’s 4 freaking hours for a child who had 2 seizures in past week, has a virus, and cold and caught fever while there … when she has a history of febrile seizures … 0/10 would not recommend. Shame on u all

Very friendly staff and amazing doctors. The information desk is very helpful. The front lobby is well designed and honestly fun to be in due to it's design: there is a meandering ramp that goes up several stories with interesting interactive stops on the way. The lobbies on each floor are also all well laid out: they have great views outside and inside were designed with children and comfort in mind. The plaza out front and the cafeteria/Cafe are both relaxing places to recharge.

My brother was in this hospital because he had appendicitis and had to get surgery and He said the nurse was nice! I think this place is really nice because it's clean and Its nice looking, I know that because I was there to visit him in the hospital. I also want to thank you for saving my Brother before more consequences happened to him and that he could've died.. but thank God this hospital was there! Once again, thank you for saving him🙏🤍 Also I definitely Recommend this place if you want nice doctors and want to feel less anxious and comfortable here.👍

This hospital isn't what it used to be! It seems to be loosing patient focus and fast. We've been a CHLA family for 11 years and I think it's time to switch. My autistic son was SCHEDULED for Dental Surgery. Originally it was supposed to be at 1pm and us be here at 11am. When we got the call from the nurse last night that we needed to be here at 530 AM we were like no one told us! But we got here right on time. We'll let me tell you that they took him upstairs to Surgery PreOp it took over 4 hours to get him into the the surgery room, because he needed to be admitted after surgery and no beds were available. This hospital needs to have better planning for these types of things OBVIOUSLY there will be emergencies that come in over night THAT SHOULD'VE ALREADY BEEN ACCOUNTED FOR!!! Maybe you need more staff and more beds!!! Because to have a child basically starving because you couldn't plan Accordingly is just plainly ridiculous! Then when I spoke to the Charge Nurse in the Surgery Dept she tells me that if my autistic son has an outburst that the anesthesiologist and nurse are there to help give him something to calm down. So basically if my son has an autistic outburst they will just drug him up. I'm like realistically drugging my son just to calm him down because your hospital didn't plan accordingly is uncalled for and unnecessary! Again I am seriously contemplating switching hospitals even though my son is on the Heart Transplant List!!! -A Frustrated Autistic Heart Mom

Ok so I had open heart surgery 20 years ago. I was well cared for and was in icu for three days and then went to a step down room where I was later discharged home after only three days at the hospital. My team was so amazing and so supportive and loving. And a picture of me twenty years later.

Got first-rate care, had a great experience and a positive outcome! Kudos to the Nurses, Doctors/Surgeons/Anasthesioligists, Physical Therapists, Dieticians/ Food Service, Fellows, Interns and Students.Special shout-out to my postoperative caregiver- Karina Valentine. She kept me going through the most challenging part of my surgical journey- enduring procedures to facilitate the OUT in outpatient. Lest we forget the unsung heroes that keep the hospital so hygienically safe and superior- I must now sing my praises to the custodial technicians: 🎶We could eat off of the floors But we don’t have to They give plates and forks Don’t spill dessert (I got strawberry shortcake 🍰)

Duke has reached a new low in Health Care. I'd give them stars in the minus categories if I could. My son had eye surgery and every time we went for an appointment we waited over 2 hours to be seen. I can tell you I read 150 pages of a book on one visit. We actually saw people leave without being seen because they had waited so long. My son objected to the long wait one day and was told by the surgeon that he was ruining her day. Because of the wait he asked to talk to the manager or an administrator. While waiting the police came made him leave because they said he raised his voice. He was not allowed to talk to the administrator and was escorted out. This is not the first problem we have had with Duke. My son was in the emergency room waiting for the specialist on call when the Emergency Doctor came in and told him that the specialist on call was already home and refused to come in to see him. We were told he should go to the specialist's off the next day. We did that and he was seen for less than 10 minutes and told to go back to another doctor. Seems the specialist could have cut through the chase and just told us that to begin with. My impression is that almost every one in the hospital system is very impressed with themselves and seems to think it below them to interface and deal with patient who have some real problems. I can, in no way, recommend any Duke Service. I could continue with examples but it would sound repetitive. I practiced Nursing for 45 years and never came up against any care that is this poor in quality. Giving them -5.

There is good and bad. I recently gave birth at Duke University Hospital and I want to say that my experience with Doctor Clifford, and nurses Lexi, Brenna, Tabitha, Josephine among others was phenomenal. I was blown away by the care and compassion I received so I will say it was a four star experience. However, I have one major complaint about the experience and feel it's important enough to try to voice it. The postnatal recovery rooms are terrible. They are the size of walk in closets and if you have a support person such as your husband staying with you, they have to sleep on what is essentially an airplane chair. My husband could not do it, and it made the end of my experience at Duke hard because I needed him there with me. I felt like me and my baby were locked in a cell and I was going crazy by the time I was discharged. Thank god I was discharged early. There were many people coming in and out of my closet those last few days and nights, and it was definitely too many people. After receiving an emergency C section, I felt I was improperly educated on the repercussions. I had no idea I would have trouble producing milk after my blood loss in surgery and I was not informed about any of the medication I was prescribed. Again, it would have helped if my husband could have been there because maybe I actually was given information but was too out of it for it to sink in.