Got approval for Cleveland Clinic

[briansmom]

Yeah! We finally got the approval, but are still waiting for the actual details. I know we will be going in the next 3 weeks. We are seeing Dr. Gorlich for the possible Fibromuscular Dysplasia and Dr. Laars Svenson (surgeon?) and also a cardiologist, rheumatologist and nephrologist. At least one of those big brains should be able to figure him out - right? right???

We also got a bit of good news from his CTA done last Friday. I was really worried about another aneurysm above his dacron graft because they were seeing something funky on his echo but the CTA didn't show anything to worry about - other than his low EF. So at least I feel like we have a little more time to get things figured out.

They stopped his hydrolazine and put him back on lisinopril to see if that fixes his headaches. Lisinopril is good as long as his renal artery does not stenose again.

I will update this thread when I have the actual dates.

Oh, and just as an aside - my other son, Shane, got his drivers license today!

So, no questions unless someone wants to chime in about Dr. Svenson. But please pray we get some answers and an actual plan.

 

[ALCapshaw2]

YES, Dr. Svensson is a well known and respected Surgeon at CC. You might also want to do a VR.com Search for his name. He has been used by several of our members.

You should be able to find his background / profile on the CC Website. See if there is a section title "Our Surgeons" or something similar.

EDIT - I found this link from Google (Dr. Svensson - yes double-s "ss") my.clevelandclinic.org/heart/webchat/aorta071107.aspx
so apparently he has an interest in surgery of the aorta.
There was also a Google Link to the "staff-directory" at CC.

EDIT#2 - This is from his profile on the CC staff directory website:

Lars Georg Svensson, MD is an attending surgeon and Director of the Aorta Center, Director of the Marfan Syndrome and Connective Tissue Disorder Clinic, and Director of Quality and Process Improvement in the Department of Thoracic and Cardiovascular Surgery at Cleveland Clinic. (Now I know who the Aorta Guy is at CC
http://my.clevelandclinic.org/staff_directory/5/staff_4359.aspx
(How did he ever get 100 years experience in CT Surgery in less than 40 years? When does he sleep?)

Hope they will be able to shed some light on Brian's issues.

'AL Capshaw'

 

[Bigred]

This is great news. Your son will be in very good hands at CC. Hopefully you can breathe a little easier for the next few weeks.

 

[skeptic49]

Glad to read the good news, Deanne. Here's hoping you get the kind of help you're looking for at CC.

Best wishes,

Jim

 

[Duffey]

Deanne,

I'm hoping you find the answers to your questions at CC.

 

[Cooker]

Still got him in my prayers... hope the CC has some good news and answers

 

[Danny]

Sounds like your finally getting some much needed news..congrats... I hope the best for you and Brian. Also, congrats on your other son getting his license. Im sure hes excited about it.

 

[barb]

Hi Deanne. Dr. Svensson did my surgery in July. He is THE guy to go to for aorta issues. He is very nice but truthfully I didn't see a whole lot of him. At my pre op appt he was good about spending as much time as I needed but then I did not see him much after that. He is considered the best and from my experience I can vouch for that. He found my aorta to be in worse shape than the tests showed but I have recovered beautifully without complications. Cleveland Clinic is very good at dealing with out of town patients as I observed. I live here in Cleveland, so please let me know if you have any questions that you think I may be able to answer. I will be keeping you and Brian in my prayers.

 

[kfay]

Deanne, I just wanted to tell you how happy I am for both you and Brian. I hope that CC is able to figure things out and set him on a healthier path.

Kim

 

[Lily]

Hoping all goes well, Deanne .

 

[Jackie]

My thoughts and prayers are with you and Brian.

 

[Star54]

Hoping for the best news for both of you!

 

[CThrock]

Thanks for sharing your good news. Hopefully CC can answer your questions and get some help for Brian. He is still in my prayers. Hope all goes well.

 

[thenewmarket]

Dr. Svensson did my husband's surgery and he is beyond top notch! He is all business but he will answer any and all of your questions. His staff was wonderful and very helpful. I know you are totally familiar with the routines at facilities like CC but if I can help with any information like where to stay, etc. etc. just ask.

 

[Lynlw]

Great news!! and yes If Brian were my son, Svensson would be the guy I would want at CCF

 

[catwoman]

Deanne:

That's terrific news! And here's hoping they get Brian figured out.

 

[bvdr]

I'm so glad to read this. It just seems like the right thing to do. You all have gone through so much and Brian's situation is so very complicated that you need the best gathering of minds to advise you. I keep Brian in my prayers.

 

[COLLEEN S]

Praying you get your answers.

 

[briansmom]

I booked the flights today. We will be at CC Nov 10-13. I am assuming that we will be staying at a hotel on the CC campus, hopefully I can afford 2 rooms or at least a suite. I don't think I want to spend 4 nights sharing a room with my teenage son

Is there anything I need to do to prepare for all these visits? They already have his records, so I'm not sure what else we have to add. I assume they will ask us any questions that they feel aren't answered in the records.

What do you suggest?

 

[Freddie]

Personally I would have my own set of all the records, just in case; nothing wrong with being overly prepared.
Is there any way you can check if there is a room at the hotel on the CC Campus? Rather be safe than sorry.