casey311 Posted February 12, 2009 Report Share Posted February 12, 2009 So I just got the call that they are cancelling Dr. Grubb's march appointments. I'm travelling from Missouri and already had an appt scheduled at the Cleveland Clinic that same week. I'm debating on still going to Cleveland or should I just cancel and wait. I called and seen if I could get in with Beverly and and she has an opening that same day but I also have a pacemaker and Beverly only deals with POTS and NCS, which I was diagnosed with along with Sick Sinus Syndrome. I don't know what to do? Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted February 12, 2009 Report Share Posted February 12, 2009 go to CClinic.Dr. Grubb has had a rough few years between health problems of loved ones. I totally understand canceling March appts.But since you are traveling, I would do the CC thing for sure. Hope you get some answers. Quote Link to comment Share on other sites More sharing options...
Maxine Posted February 12, 2009 Report Share Posted February 12, 2009 I would go to the Cleveland Clinic, as they have been helpful for many.If you see Beverly, there is also an RN there who can read pace makers. He was the one who downloaded my loop recorder on a regular basis. This guy is really nice and down to earth. I would call and ask about the pace maker. I'm sorry Dr. Grubb's office had to cancel, but I know he's had his own share of difficult times.As always, Dr. Grubb and his family are in my thoughts and prayers.Maxine :0) Quote Link to comment Share on other sites More sharing options...
casey311 Posted February 12, 2009 Author Report Share Posted February 12, 2009 I totally understand him cancelling. I know, well, heard that he's been through a lot and I just with him and his family the best and hope things get better for them. I decided to go to Beverly on that day anyway and see what she thinks and if she thinks I need to see him then I'll deal with it then. Thanks for the responses guys! Quote Link to comment Share on other sites More sharing options...
Stace915 Posted February 12, 2009 Report Share Posted February 12, 2009 They just called and canceled my appointment too. I have seen Beverly before and no offense to her but she is not a doctor and is not nearly as knowledgeable as Dr.Grubb. I asked the woman who called me if Grubb is referring patients to any other doctors and she said no, she is just recommending that people see Beverly. Honestly I felt like my first appointment with her was a waste of time... I know that Dr.Grubb is a person and is going through some really really difficult times in his personal life and that is completely understandable but I can't believe that he hasn't trained another doctor (not a PA) under him or take over when he eventually retires. He has a LOT of patients that rely on him and I am wondering where we are all going to go. The receptionist asked me if I was on any meds prescribed by Grubb and I said yes and he said oh well then I will try to get in you and call you back but please be patient. I am a little confused what my prescriptions have to do with me getting an appointment but I just said ok, thank you.I feel like I should start looking for another specialist, I have a local electrophysiologist but even he has said that he wants me to see Dr.Grubb because there is only so much he can do for me. Does anyone know of any other dysautonomia or POTs specialists anywhere in Ohio or within a few hour drive from Ohio?Thanks! Quote Link to comment Share on other sites More sharing options...
PattiL Posted February 12, 2009 Report Share Posted February 12, 2009 Stace,We've had the same problem. Dr. Grubb's office canceled Chrissy's appt. last August and said we have to wait for a call back or see Beverly. We started seeing Dr. Robert Shields at the Cleveland Clinic who we just love. Chrissy sees him every three months and for us it even more convenient than going to Toledo. He's very patient and knowledgeable like Dr. Grubb and he is head of the Autonomic Laboratory, Department of Neurology at Cleveland Clinic, Here's some info on him.http://my.clevelandclinic.org/staff_direct.../Staff_505.aspxHope this helps some.Patti Quote Link to comment Share on other sites More sharing options...
iheartcats Posted February 12, 2009 Report Share Posted February 12, 2009 When was your appointment, if I may ask?I have an appointment toward the end of March and I've not heard anything from them yet.My PCP and EP were 'banking' on this appointment as I've not been feeling well the last few months...ack.Do you know for sure all March appointments are cancelled? Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 13, 2009 Report Share Posted February 13, 2009 I really like Beverly. As far as POTS goes I'm on the severe end of the spectrum. I'm not an easy POTS case, but I thought Beverly was great. She was helpful and knowledgeable.If you are already going to be in Cleveland for an appointment, it may be worth it to go see Beverly. However, if you are going to see an autonomic specialist at the Cleveland Clinic, then you might not need both appointments. You might not find out much more, but it can't hurt to have a second medical professional looking at your symptoms, condition, meds, etc.Rachel Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted February 13, 2009 Report Share Posted February 13, 2009 Well, we better start seeking alternative doctors as I know Dr. Grubb has said YES to new patients for WAY too many years.I do not know the man aside from one appt and a couple of emails, but WHEN you are as busy as he is, it would be exhausting to try and train somebody. How would one even have the time for a screening process? And I have heard "mixed reviews" on Beverly, but maybe it depends on where we are in our journey with this, and what bump in the road, how many years in, etc.Add to that the health issues of his own and loved ones, and well, he is only one guy.At this point, I am hearing more and more good things about many doctors in Cleveland and for new folks suggest you go there. It's just a few more hours.Honestly, Dr. Grubb has done so much, he really needs to cut back and take care of himself. He needs to survive first and take care of his family.I also know if you need medical INFO for disability, last I heard Dr. Grubb does not get involved in that due to time issues.I wish everybody luck in finding an alternative doctor. My thoughts and prayers to Dr. Grubb and his family. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted February 13, 2009 Report Share Posted February 13, 2009 Appreciative as always to Dr. Grubb for the contributions he has made not only to us our patients but also for his contribution to the medical community for furthering and expanding the knowledge base on POTS.Cancellations are difficult particularly when one has waited a long time and has expectations for help. Please bear with Dr. Grubb...he is only one person. He has his own/family needs to deal with just as we have our own.I would add to this list of knowledgeable doctors in this area of POTS: Dr. Kusumoto, Mayo Clinic Jacksonville. He is listed on the DINET medical site. He definitely has an interest in POTS, which is certainly more than a lot of doctors. He is perhaps not at the level of Dr. Grubb but certainly has a good understanding of POTS and the difficulties we all have in management of the myriad of symptoms. Moreover, he has the other services of the Mayo Clinic available to him.Good luck at the Cleveland Clinic.As others of said in the past, I repeat that there is no magic bullet unfortunately for the treatment of POTS. It is more in the area of finding a cocktail of meds that might work and then tweaking them when necessary. False expectations are a reality for us, I am afraid.Unfortunately/fortunately many of us know more about POTS than many of the doctors out there. DINET is one of the many reasons for our expertise. I think that the most any of us can do is really go to the doctor armed with the information from DINET, including Dr. Grubb's well-done articles on POTS and its management.Sorry for my rant...Lois Quote Link to comment Share on other sites More sharing options...
Stace915 Posted February 13, 2009 Report Share Posted February 13, 2009 Thanks for the info about the doctor at Cleveland Clinic. I hope no one took what I said about Dr.Grubb the wrong way, I think he is an incredible doctor and person and he has helped me immensely. But he is just that, one person, and he has a lot to deal with in his own life right now which I completely understand however I feel like being a world-renowned specialist he has not really made the proper arrangements or suggestions to help all of his patients continue to get the same wonderful care he has given us when he is not available and I think now that his availability is even less than it used to be a lot of people are going to be trying to figure out what do.Hope this finds everyone feeling well!Staci Quote Link to comment Share on other sites More sharing options...
Maxine Posted February 13, 2009 Report Share Posted February 13, 2009 Cleveland is only a couple hours from Dr. Grubb's office.If your ANS dysfunction is more complicated, and you need to be followed very carefully---possibly because your POTS/dysautonomia is secondary to something else----i.e.-----> EDS, lyme, CFS, lower brain injury, upper spine compression ect. then Cleveland Clinic is a better choice then Beverly.Beverly handles followup appts. of people already diagnosed with POTS/ANS dysfunction, but is not qualified to diagnose, nor is she qualified to handle complicated cases of ANS dysfunction. She is not a doctor, and as a lot of you already know, some DOCTORS aren't even qualified.Good luck to you, I hope you find the BEST possible care.Maxine :0) Quote Link to comment Share on other sites More sharing options...
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