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I just moved to San Diego, and I'd like to build a list of doctors in SoCal with VHL experience.
Please reply with your VHL related doctor recommendations in Southern California.
Thanks,
Brian Newbegin
Brian,
I live in San Diego and I belong to Sharp Rees-Stealy Healthcare group. These are my doctors:
Primary: Dr. Assaf
858-499-2263
Neurologist: Dr. Hogan
619-644-6750
Urologist: Dr. Darlin
619-397-3283
Interventional Radiologist: Dr. Lyon
858-939-3609
I have been with Dr. Assaf since I moved to San Diego in 2002. He's so good that when he moved from UCSD healthcare to Sharp Rees-Stealy, I moved with him! The other three are great too. I really feel that I've finally found a team that knows how to help me combat my VHL.
I hope this information is helpful to you! Let me know if you have any questions.
Christina
Hi,
I live in AZ but my urologist is in UCLA. I had a complicated kidney case, and no one in my local area were willing to touch them. I was originally told that I would need to have one of my kidney's removed. But, Dr. Belldegrun and his team saved them both with partial nephrectomies.
I strongly suggest Dr Arie Belldegrun and Dr Jeff La Rochelle. It may be a distance from San Diego, but a doable drive.
They specialized in VHL and are very attentive. They have always been available by phone or email. Their assitant, Lizette handles all messages and they get back to you quickly. They have an excellent staff!!
Arie Belldegun, MD, FACS
Professor of Urology
Chief, Division of Urologic Oncology
310-206-1434
Jeffrey La Rochelle, MD
Fellow and Clinical Instructor @ UCLA
310-206-1434
Good luck to you in SoCal!
UCLA is coming online as a clinical care center sometime before June. We are working out the final details with them now.
Best wishes,
Joyce
I am happy to see Dr. Belldegun & Dr. La Rochelle listed as referral doctors. I am seeing them tomorrow for a consultation regarding tumors on both of my kidneys. I have seen several urologists at UCLA who were unable to do anything for me. Hopefully they can help me and remove these tumors... I was diagnosed about twelve months ago with VHL after doing the genetic testing through Cedars Sinai Genetics Unit. They sent my blood work to The Children's Hospital in Philadelphia and it came back positive. I have known for several years that I have it, but needed confirmation.
I was diagnosed with a pheo about twelve years ago after my doctor at the time was doing a pre-op for endometriosis surgery. I was suffering from really high blood pressure, so they refused to do surgery until they found out why my blood pressure was so high. After a CT scan and 24 hr urine collection they discovered the pheo. I then had the adrenalectomy.
I'm very happy to of found this site, it is an inspiration to read about others in situations similar and to know you are not alone. I wish I had found you sooner.
I have not been getting regular scans these past few years as I lost my mum to kidney cancer and was back and forward to the UK to spend as much time with her as possible.
I decided to move forwards and put some energy into my health issues the beginning of this year and have the MRI and CT scan done. They found two tumors in the spine, one in the back of the head and several on both kidneys, one is 8 cm on the left kidney.
I will attend my appointment tomorrow at UCLA and write more about my situation.
Best wishes to all the people on this site
Angie,
Best of luck with everything at UCLA. I don't' know anything about Dr. La Rochelle, but Dr. Belldegrun did my partial nephrectomy. I think he is great as a surgeon, but his bedside manner left a lot to be disired with me. I have total confidence in his abilities as a surgeon, but don't be surprised if he is a bit short with you, even sometimes rude. I understand that some people can have very different experiences with the same Dr., but I felt I should warn you just in case. Also, if you are looking for someone to consult about the other tumors, Dr. Langston Holly is a Neurosurgeon and is part of the UCLA medical group. He is located in Santa Monica,(310) 267-5580 is the number to his office. He is my favorite Dr. I have ever had which is saying a lot. I very strongly recommend you see him. He's just a wonderful person and surgeon.
I also want to encourage you to really stay on top of your scans. It makes everything a whole lot easier when things can be handled before they become a serious problem. Once again, Best of Luck.
I Just wanted to say thank you for your feedback on Dr. Belldegrun, I really appreciate it and also the referral for the Neurosurgeon in Santa Monica. My appointment went well and I feel good about him. I understand the bedside manner comment, although I think its just his way and nationality!! I'm just waiting now for a date for the surgery.
I had my first round of scans in San Diego with the Sharp Rees-Stealy Healthcare group. (Thanks very much Christina for the recommendation).
The appointments went well, and I think the doctors are likable. I did have some "electrical shock" problems with the 3.0 magnet MRI, so they had to put me in a 1.5, but I'll post that MRI specific question in another thread today.
One of my friends (in the medical field) asked me, "Why would you go to a medical group that is owned by an HMO?". I didn't really know the answer to that. I'm not sure if Sharp Rees-Stealy, being owned by an HMO, is any better or any worse than any others, such as UCLA or UCSD.
Does anyone have any thoughts on this topic?
Yes, a lot of people are mis-informed when it comes to HMO. If you have a good primary care physician you're okay, if not you can always change him at the start of a new month. Our whole family has HMO and we are with the St Joseph Health System, everything is set up before you get any services to where the insurance has already approved it and all you have to do is show up. All the doctors with St Joseph Hospital Affiliated Physicians are great, they are so kind and they know what they are doing. Dr. James Burris O.D in Orange is a great Primary Doctor and anything you need he does the referral right away and you always get the approval within a week, all the doctors we have been referred to by him have been great too, specialy Dr. Bradley Noblett, he is a Neurologist. I work at the hospital and I can tell you that most of the PPO admissions that I do pay more out of pocket and get the same services as HMO patients. I really doesn't matter as long as you have good doctors that care for your health.
Thanks very much for the reply.
The question was not whether one should chose the HMO type of insurance over a PPO plan. I believe those are individual choices that depend on a lot of factors.
My question was whether a group of hospitals and medical clinics that are OWNED by an HMO company would be any better or any worse than other hospitals not owned by an HMO. My question is whether an HMO-owned hospital will provide the same level and quality of service, access to research, current technology and protocols that other non-HMO-owned hospitals provide, like St Joseph (I'm assuming it is not owned by an HMO).
Thanks again.
I don't think there are particular issues with the management structure, it's more the mindset of the doctors in question. If you have doctors you are comfortable with, who are helping you screen and manage VHL, that's terrific.
Some HMO's do limit the time the doctor can spend per patient, the number and kinds of scans they can order, and the kinds of prescriptions they can write, and give out "demerits" for doctors who exceed those limits. The better docs will not be constrained by those limits if they feel the patient needs it, but it does hit them in the pocketbook, so it can be a problem. You might want to have that conversation with your doctor to see whether s/he feels the environment is constraining in those ways.
Best wishes,
Joyce
Excellent suggestion Joyce. I will do that.
Tell me a bit more about this VHL Clinical Care Center at UCLA.
I used to be followed by the VHL clinic at Mass General Hospital, which I loved, but it's 3000 miles away. Will UCLA be similar? If so, count me in!
Cheers,
Brian
Brian,
My primary, Dr. Assaf, used to be part of the UCSD Health Care system. That's when he became by doctor actually. A few years back, he left the UCSD system because he was unhappy how they were treating their patients, and he felt he was too restricted in how he could treat them. So, he switched over to Sharp Rees-Stealy, which is why I switched too.
I'm not saying that Sharp Rees-Stealy is amazing or that UCSD isn't, but I'm just trying to prove Joyce's point: the mindset of the doctor is more important that the structure of the system in most cases. Dr. Assaf is AMAZING and that's why I was willing to give up the cutting edge medicine at a teaching hospital to follow him. On the other hand, just because UCSD was a teaching hospital doesn't mean that they are infallible. I've had problems at any hospital, including UCSD. I've also found some amazing treatments offered at Sharp that weren't offered at UCSD. So, go figure... right?
I think it really depends on how well you get to know your doctor. Building the trust between you and your doctor can go a long way.
By the way, which SRS are you treated at? I go to the one on Genessee most of the time. Also, I wanted to add a new doctor to that list i gave you. I've started to be treated by Geoffrey Weinstein in Radiation Oncology. He's been wonderful so far...
Christina
I agree, Christina. Dr. Assaf is a really nice guy! It's just that we are his only two VHL patients.
He seems pretty comfortable with his role as "quarterback" (as he described it). He said he would always defer to more experienced VHL experts for important decisions, and he doesn't mind asking more experienced VHL doctors for advice. I think he is great, and I'm certain I'll keep him on the team in some capacity. Dr. Assaf is exactly the kind of doctor you want in your corner!
Thanks once again for the excellent referral :-)
I'm not familiar with the term SRS. What is that?
Cheers,
Brian
I've recieved the information above from VHL Family Alliance site, thank you Joyce and Mary. However my girlfriend who was recently diagnosed with RCC and VHL is in the Kaiser Permanente program. Does anyone have any experience with doctors or Nurologist in this system? Our current experiences leave more to be desired in the terms of doctor relatability and possible history with VHL.
We are in the works of contacting the UCLA docs for reference and possibly more but how do they work out of plan? Any experience or should I start a new thread...
Thank you in advance,
Grady
Please do start a new thread about Kaiser. There are quite a few Kaiser patients in this discussion who might be able to tell you how they work out of plan... but the best way to find out is to call them and ask. There is usually a number to call on the back of your insurance card.
In every hospital and every plan there are some great doctors and some less-than-great doctors. Not every doctor even in the very best hospital is a terrific doctor. And certainly not every doctor even in the very best hospitals knows about and understands how to manage VHL.
So we pick and choose, and we frankly train doctors every day. You, as the patient, will take your little handbook with you, share one with your doctor, and begin having a conversation. What you are looking for is: is this doctor full of himself and unwilling to learn anything new (or unwilling to admit he knows less than everything)? Or is this doctor a team player and willing to learn with you, read the Handbook, and ask an expert when he doesn't know? Given a choice of those two options, which one would you choose?
There are many fine doctors in the Kaiser system. The challenge will be finding the one(s) in your particular area who will be the best ones to work with you.
Are you coming to Anaheim? There will be other patients from the LA area there, and you can share the names of doctors.
http://www.vhl.org/meetings
See you there!
Joyce
SRS is just an acronym for Sharp Rees-Stealy.
Isn't Dr. Assaf great! He's such a nice guy. He treated my Dad for his VHL too... so we're not his only two patients :) I'm so glad you went to see him! He's a wonderful physician and his staff is really nice to me. I'm sad that his nurse Kristy is gone. She's gone to nursing school so he'll be getting a new nurse. She was great! She even let me call her directly at her desk so that I didn't have to wait on hold with his office. I'm such a bad patient sometimes because I feel like I should get special treatment, out of seniority hahahaha. I spend too much time being a patient to wait on hold for 10 minutes every time I call!
Oh, and Brian...will you be going to Anaheim?
Absolutely Chris. I registered today!
Are you going? Let's carpool.
We should carpool. I live in Hillcrest area. Where do you live?
I'm in La Jolla, at least until my lease is up in September. I'm not exactly a fan of snoots-ville. I can't wait to move downtown in the fall.
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