Disappointed with my followup at Cleve Clinic

[yikespanic]

Hi everyone,

Just saw my Doc at the Cleveland Clinic Friday for my follow up appointment after being diagnosed in August. Very disappointed. I have be complaining of feeling worse after taking my beta blocker, it seems to be lowering my BP and making me feel worse. I had been experimenting with taking only half my dose for the past 2 weeks and it seemed to help. Around Thanksgiving after seeing my primary care dr for a sinus infection and complaining of feeling very down and depressed my primary care dr gave me entax and nortryptline (spelling?) After taking the nortryptline my BP got very low and I could hardly stand up, several times I just fell to my knees and had to sit down. Called my Doc at Cleveland Clinic and she said stop taking it!!!! Both drugs were dangerous for me. She must have contacted my primary and let her know, because when I called primary the nurse told me If I wanted a new script I'd have to go to a psychiatrist whose speciaty was with meds. I thought she could have just checked what was safe to give me, I felt she just past me on. Well back to Cleveland Clinic, my doc was acting funny, she wanted to ask all the questions, about an hours worth. Every time I tried to ask a question she said when she was done, I could. Well finally when she was done she stood up as if to leave, I got up and started to ask my questions. My first was, what should I do next time I'm sick, my primary doesn't seem to have an understanding of my condition or she wouldn't have given me the wrong meds. Before I could finish my question, which would have been, should I find another pcp, and if she had any suggestions, she just threw up her hands and said "I am not going to talk about this" and she walked away leaving me standing there!!!! I couldn't believe it. I felt like crying but I was also to mad to. I had to wait an hour after that before they brought out my rx refills. She never did answer any of my questions or come back. I feel so alone with this. It's like not even doctors have feelings for their patients. Going there felt like such a waste of time. I don't feel that I'm getting proper treatment by any of my doctors. I feel like I'm a hot potato being past around and just not worth the time or effort. I could go on and on whinning, that's how I'm feeling about all this. I hope to see Dr. Grubb late this summer, maybe he'll be the one to care enough to treat me like a real person.

Kim

[mom4cem]

I am so sorry you were treated like that. The nerve! I would write a letter, file a complaint, whatever, let them know about your appt., how you were left. She should not get away with that. I remember reading some on here who have filed complaints after the way they were treated, hopefully one will read this and can tell you the best place to start.

I wish I could help you, but I don't know what else to say. Trying to find a doctor who genuinely cares and will do everything to the best of their ability to help is a hard one to find. I read how Dr. Grubb and Beverly are like that. Maybe you can call and tell their office what happened and possibly get in sooner if possible?

Hang in there.

[yikespanic]

Thanks for the support. I am still thinking about what I should do. I should have been more assurtive while I was in the office, but I'm just not like that. I just take it. I know that from now on I need to.

I am so sorry you were treated like that. The nerve! I would write a letter, file a complaint, whatever, let them know about your appt., how you were left. She should not get away with that. I remember reading some on here who have filed complaints after the way they were treated, hopefully one will read this and can tell you the best place to start.

I wish I could help you, but I don't know what else to say. Trying to find a doctor who genuinely cares and will do everything to the best of their ability to help is a hard one to find. I read how Dr. Grubb and Beverly are like that. Maybe you can call and tell their office what happened and possibly get in sooner if possible?

Hang in there.

[PattiL]

Hi Kim,

I'm assuming you saw Dr. Fouad at the Cleveland Clinic--if not, disregard what I'm saying. If it was her, we had the same experiences with her as have many others. She is great at diagnosing--but not follow-ups. If you live in the Cleveland area, have you tried Dr. Thomas Chelimsky? He's much better at follow-up and his assistant has been helpful also. If you want to see Dr. Grubb but have to wait until summer, I would try seeing Beverly, his assistant. You can get in much quicker and if you go on a Tues. and Thurs. you might even get to see Dr. Grubb. Hope this helps.

Patti

[JenniferInOhio]

I had a similar experience with Dr. Fouad at CC. I'm so sorry. I know exactly how you feel

[Guest Julia59]

I found that my Cleveland Clinic experience was a waste also---and I still have two appointments coming up in March---my appointments were for Dec. 22nd---and early Jan---but I moved them to spring.

The reason is that I don't feel these appointments will get me anywhere, but i'll keep them because my insurance will at least cover them---so I might as well show up.

The neurosurgeon thinks my POTs or any of my other symptoms have no relation to my upper spine and lower brain stem compression. He then said he see's the abnormalities but they are not significant enough to cause me any problems, and went on to say I have fibromyalgia and Chronic Fatigue Syndrome. Well if you read any of my other posts---you will see I have problems related to "spine issues".

Two other neurosurgeons said they weren't positive my "POTS" symptoms were part of the spinal issues---but they said I had other symptoms that were severe enough to have surgery. One of them said I have myelopathy that is progressive due to a combination of herniated disks and congenital cervical spine stenosis. This doc had assignments at Johns Hopkins and has a long list of credentials. I don't want to get too deep into my "spine issues"----but I definately have obvious problems--and the Cleveland Clinic is missing the mark.

I have heard more then one complaint about the Cleveland Clinic, especially from people with upper spine stenosis---or chiari (brain stem compression)---or chiari related issues, and problems with the cervical/cranial junction, which many who have EDS-(ehlers danlos syndrome) have. They just don't look outside thier "safe" little BOX. Basically it seems like they like to generate revenue passing you from one doc to another when dealing with a complicated case. The problem is that none of these docs seem to be able to help some of us. I will know more when I go there in March---but i'm not real optimistic. I will look forward to eating my words----and then passing on the excitement to all of you. believe me I would have no problem being wrong---as this would mean they can help us after all.

From what I understand they do a a physical therapist who does PT designed for POTS patients. WE couldn't get an appointment for the same day as my other appointments, so I did not experience the PT. I have no idea what type of PT they do to help with POTS symptoms. I know swim therapy has been somewhat helpful, along with light weightlifting for strengthening the legs.

You will find that Dr. Grubb will definately validate what you are going through---he understands this stuff a lot----he's one of the best. He'll be honest and tell you if something will owrk--or if it won't work. He just tries to help us managem our symptoms the best he can so we can have some quality of life.

Take Care,

Julie :0)

[yikespanic]

Yes it was Dr. Fouad. And yes, she was so nice and helpfull at my first appointment, my testing and my first follow-up. What happened to her!!! I've even talked her up to others on previous posts. Oh well, that's what I've gotten from just about every Docter so far. I didn't know about Dr. Grubb's helper, that's a great idea, maybe I can get in sooner. I really have had it with Cleveland Clinic, they pass you around so much, and you never really get anywhere.

Dr. Fouad gave me a script for cardiac rehab, but my insurance won't pay for it. My husband went out and bought me my own set of wee little dumb bells all the way up to 20 pounders. He has been helping me start working out at my own pace for a couple of weeks now. Walking got me to fatiqued, but the light weights seem to not affect my dizzyness. Just my muscles, there sore. Just 3 days per week, alternating upper and lower body. Like Tues/Upper Thurs/Lower Sat/Upper and then the next week Tues/Lower and so on. This way each area gets a break. I'm going to try the exercise bike on the off days as soon as I'm not sore.

Kim

[singledadof3girls]

Hi Kim,

I'm assuming you saw Dr. Fouad at the Cleveland Clinic--if not, disregard what I'm saying. If it was her, we had the same experiences with her as have many others. She is great at diagnosing--but not follow-ups. If you live in the Cleveland area, have you tried Dr. Thomas Chelimsky? He's much better at follow-up and his assistant has been helpful also. If you want to see Dr. Grubb but have to wait until summer, I would try seeing Beverly, his assistant. You can get in much quicker and if you go on a Tues. and Thurs. you might even get to see Dr. Grubb. Hope this helps.

Patti

Dr. Chelimsky is a great doctor, he only sees patients one day a week, but they did a great job in getting me in to see him. I have had some issues in the last month, when I called in and left a message for him, he called me back the next day himself. I was shocked, I had never had a doctor call me back personally, always one of the nurses.

[Jacquie802]

I had a great cardio in Boston that would always call me back himself. There were no nurses of his that called me back, etc. it was always him. I go to see him Jan. 9th.

[Mrs. Glass]

I know what it is like to not have a good doc. My PCP wont even touch this problem. She always sends me to a specialist for everything. The only one who is really trying to help me is my Cardio, and all he is doing is to try to control my b/p. He wanted me off of the Neuronton, and I went off of it, but I had to go back on it because after back surgery I have horrible nerve pain. So I will call him today and let him know that I had to go back on it. He will not be happy but that is one pain that I can not take. My Neuro at first seemed generally interested in my problems but now it just seems like he doesnt even want to fool with it. I have talked to one person who sees the same Neuro and she said that he did her basically the same way. So I am stuck out here without proper medical help. I have sent in my app to Vandy to try to get in there. I have got to do something. I cant stand this anymore. I dont want to live like this anymore. Not knowing what to expect anymore. I want a proper diagnosis, not just guesswork and I dont want docs to push me off to someone anymore. So I know how you feel and I wish that I could help you. I would definatly write a letter of complaint on this doctor. What she did was totally wrong! Here you paid good money to get some help and all you got was brushed off. I mean where is these doctors oathes? Sometimes I think all they truly think about is how many patients they can see a day and then see dollar signs. They dont seem to care really. It is wrong and it is frustrating. They are supposed to be here to help us not to push us aside like we were just a piece of trash on the floor. I hope that you get some answers and soon. I know your frustration.Vanessa

Edited January 3, 2006 by Sunfish

[carlacat]

I saw Dr. Fouad also and I guess I must have hit her good days cause she was very patient and caring and she took along time with me. I think down inside that the docs are as frustrated as we are cause they dont know why everyone is getting this and they just try things to help us. That diffently is not an excuse for how Dr. Fouad treated you...I would have been fit to be tied!!! I have been to other docs like that and I never went back!!! I hope all had a good New Years and I pray for a cure for all of us!!!!

[Guest Belinda]

Yikes.. if I am not mistaken you are from the area..I have an electrophysiologist named Dr.Giannattasio who is very familiar with POTS and is treating me for it..seeing me like every two weeks.

He is out o

f Southwest Hospital in Berea. He suggested I see Dr. Grubb instead of me suggesting it.

Let me know if you would like his name and ph. number..Belinda

[Eli6596]

Hi Kim,

I am so sorry to hear that you were treated like that. Being a doctor does not automatically mean that you are compassionate. Doctors are people first. Any person can be a jerk, or act like a jerk on at least one occasion. Some doctors never learned compassion, and some had it but lose it due to burnout.

I believe that it is essential to find a doctor that not only has compassion, but with whose personality/style you "click". We all deserve that. Please don't get bitter about doctors. There are a lot of good ones out there.

Karyn

[Sunfish]

kim -

i'm so sorry for your experience. i'm in cleveland and have several docs at the clinic but didn't consider certain appointments as some docs really don't do follow-up and at this point that's what i need; i've already had the testing, etc.

re: some others' comments about the clinic though, i think it is too large of a place to make generalizations. while there are challenges in dealing with a large institution simply for that reason i would hate for anyone to write it off entirely as an option b/c of one person/experience. i've been a patient there since august in a handful of different departments and while i haven't been happy with everything i've also come across some really good docs.

my neuro there is the head of the autonomic lab at the clinic and i really like him. it's a bit of a challenge to get to him at times but at my last appointment he gave me some "tricks" to track him down. and he's definitely in it for the long haul, didn't make me repeat testing, etc.

hang in there...

melissa