[Found Specialist]

Author: Connie (---.proxy.aol.com)

Date: 08-10-02 10:56

Hi All............

I wanted to thank Reenie Smith for the advise about MUSC in Charlston SC. I did find a Cardioligist whose interest are Hypertrophic Cardiomyopthy, Alcohol Septal Ablation, and Pacemakers. His name is Christopher Nielsen. I have an appointment with him Sept. 13TH at the Mt.Pleasent office, just across the Cooper River Bridge. I feel so much better and relieved. I also got my records from 2 of my cardioligist and ordered them from the local hospital. the hospital was great about gettingall my records, but why is it the Doctors office's act like im bothering them by asking for my records. And they will only give files for the last visit???? I saw the one Cardiologist for 6 yrs. Is this normal???

Any way I did manage to find in some of the records my Septum thickness as of 8-20-01......1.6 cm and a 37mm gradient. My current gradient is 40mm, I have no idea what my current septal thickness is. Are the numbers I gave good, bad , acceptable????

I cant wait to get to my appointment in charleston. Connie

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[Re: Found Specialist]

Author: Jerry Salzman (---.indy.rr.com)

Date: 08-10-02 11:02

Connie,

I think it is just the office. I got copies of everything for my visit to Cleveland. My problem was the copy of the echo was too short. My guess is in the end it will not matter because they will do new tests before any procedures. You may also want to ask your PCP for copies of the updates sent by the cardiologists.

Jerry

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[Re: Found Specialist]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 08-10-02 11:13

Dear Connie

Write a formal letter to the doctor of 6 years's office and request that a copy of your entire file be sent to the new cardiologist. I've never heard of a doctor being such a grinch with the file and it is your right to have the whole thing sent. If they give you grief, then order a copy of the whole file for yourself and send a copy of that to the new guy.

take care,

Sarah

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[Re: Found Specialist]

Author: Reenie Smith (---.snbrca.adelphia.net)

Date: 08-10-02 11:39

Connie,

You are very welcome for the info about MUSC in Charleston. My heart condition is a lot different than HCM, but I was followed there as a child. I'm so happy to hear they do have a specialist who can see you. I wish you the best of luck with your appointment and please keep us posted.

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[Re: Found Specialist]

Author: Janis Grant (---.proxy.aol.com)

Date: 08-12-02 15:17

Do you have a phone number for the dr. in Charleston,S.C. as I am a HOCM patient in this state.

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[Re: Found Specialist]

Author: Janis Grant (---.proxy.aol.com)

Date: 08-14-02 19:19

Hi Connie,

Just wanted to know how your visit to Charleston went.

Do you feel you made the right choice? The reason I ask is I don,t

know what I should do and maybe if you think the new M.D. can

help you more than the previous one. How many years have you known

that you have HCM? Hope he made you feel comfortable.

Janis

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[Re: Found Specialist]

Author: Connie (---.proxy.aol.com)

Date: 08-14-02 21:57

Hi Janis.....

My appointment isent until Sept. 13 th. Did you get the link I sent to you yesterday about MUSC?

I have known I have HCM for less than 6 months. I cant wait to see the new Doctor. If he knows what HCM stands for I will be all excited, and it will be more than the 3 local Cardioligist I have seen know.

The first Cardiologist I ever saw, and went to him for 6 years, diognosed me about 2 years ago, but refered to it as IHSS and dident make much of it, other than , and I quote..."A little pressure in my heart caused by high blood pressure". He wasent worried....so neither was I. It was this past March, when my hubby had a heart attack (he was also being seen by this same doctor, and he missed a major blockage that was causing pain) and he was treated by another cardioligist and a very good one at that......so I transfered to this doc also...he is the one that raised the concern about my "IHSS" and its severety. While he dident know a whole lot about HCM, he was very concerned about it and making sure I was getting the proper treatment. He was very irritated with my former doctor and his lack of treatment and concern about IHSS..(his term). So this is my trek so far with my HCM. I am hoping I will get more answers and better treatment so I can have a better quality of life.

Do you live in Charleston or near??? My sister lives in Summerville...and I just love the Carolinas...I live way down here in the bottom of Alabama, 20 miles from the Fla state line. So any excuse I can get to go to Charleston...I take. I will be sure to let you know how it goes. C.C.

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[Re: Found Specialist]

Author: susan (---.26.OVG.vol.com)

Date: 08-15-02 20:31

hey connie,

if your going to musc and have a doctor who is going to treat your hcm, guess what your in luck. they are researching hcm at musc. you should have no problem at all learning about hcm, they are a wonderful wonderful group of doctors, you can ask lisa about them also. just give her a call. good luck and i hope you enjoy your visit to musc, i was just there 2 weeks ago and i will be there again on sept 9th.

susan

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[Re: Found Specialist]

Author: Janis Grant (---.proxy.aol.com)

Date: 08-18-02 10:05

Hi ,

Sorry I had your Appt. date incorrect, sometimes I get a little scatter-brain.

I live in the upstate of SC in Anderson, foothills of the mountains. I was diag.

about four years ago by accident. I,m not much for going to M.D.,s.

I,m glad your sister lives in the lower part of the state so you will be able to visit

with her also.Good Luck on your trip to Charleston and yes I did get your infon MUSC.

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[Re: Found Specialist]

Author: Janis (---.proxy.aol.com)

Date: 09-14-02 09:42

Hi Connie,

Wanted to touch base with you and see how your trip to Charleston went.

What is your e-mail address again?

Take Care,

Janis Grant