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barb

Well-known member
Joined
Jun 4, 2009
Messages
94
Location
cleveland,oh
I am 47 years old and was diagnosed with aortic stenosis as a child. I was followed by cardio through my teens. I was always assured that it wasn't a "serious " condition. I went about my life not thinking much about it. I did check back with my cardio in my early 20's when I began having children just to make sure there were no safety issues with childbirth and was once again assured.

Fast forward 20 years to 2004 when our youngest son was born with down syndrome and a hole in his heart. While giving a history to his cardio I mentioned my own aortic stenosis and he was the one to warn me urgently to get it checked asap. The first echo didn't show anything new but at a later follow up the doc mentioned that since for some reason I am hard to diagnose on echo (position of my heart or some such thing?) I should have a cardiac MRI. This showed a 4.5 cm thoracic aortic aneurysm. Watch and wait I was told.

A year and a half later it measured 5.0 on CT scan. I was then referred to surgeon . This was just last month. The echo that the surgeon did last month showed borderline pulmonary hypertension as well as moderate aortic stenosis along with the aneurysm. I was told that I need what is referred to as a "root replacement" in the next month or two.

Here's where I'm at with all of this. I was first referred to Dr. Markowitz at University Hospitals here in Cleveland. I liked him very much. Of course being right here in Cleveland, I am seeking an opinion from the Cleveland Clinic as well. I have sent my records to Dr. Svenson for review and am waiting to hear from his office. It's been over a week since they have had my records so I am going to call there today.

I notice there are several people here who have used the Cleveland Clinic. Could you tell me how long they took to get back to you with an appointment? Anyone have experience with Dr. Svenson? Anyone possibly have experience with Dr. Markowitz at UH?

I really thought I had several more years before I would be facing this. I'm still trying to accept the whole thing. We have a large family including of course my son with special needs. I desperately feel like I need and want to be around for him for a very long time. I also fear what recovery will be like with my little guy who is used to climbing up on my lap and generally needs a lot of pysical care. Of course I will have help since I know I won't be able to lift him but the whole thing seems impossible right now.

Reading the experiences here has already helped me tremendously. Thank you.

Barb
 
Dear Barb,
Just wanted to welcome you to VR & so glad you found us. I hope that you will feel comforted by the wonderful success stories here & to tell you that all of us have felt bewildered & scared witless when facing OHS! But the important thing is, that we're still standing! :)

I do know that several members have used Dr. Swenson & I'm hoping they come along shortly to give you some input.

In the meantime, hang in there & try not to get yourself too worked up about things. All will be taken care of in due time.

Take care & prayers to you! :)
 
Hi Barb,

Welcome to VR. You have come to the right place, lots of people who can empathize with how you are feeling.
I can definitely relate on the aneurysm thing - I was shocked when mine was discovered by accident, after having OHS in 2005 I thought I was "free", so to speak, for 10-15 years...but here I sit, waiting to see where it's at. It's definitely a shock to the system.

I can't advise anything on the Cleveland Clinic, but plenty of folks here will be able to tell you their experiences there. From what I've read thus far, Dr. Svensson is top-notch.

I know it's scary - but getting this surgery now will ensure that you are around for your family a very long time. You will need your family to help you in your recovery. Your little guy with Downs that likes to climb up in your lap - might be an issue for a bit while your sternum is sore, but pillows will work wonders.

I know you have a million questions, but don't be afraid to ask - someone here will know the answer. We'll help you get through it!

If I may say so - I don't mean to generalize, but I just love Downs' kids - I envy the way they look at the world, with not a mean bone in their bodies and no idea of what malice is. A dear friend of mine recently gave birth to a little boy with Downs' syndrome, and after they got over the initial shock, that little guy has just become the joy of their family.

I wish you all the best - we are all here for you, and you'll come through this just fine.

Melissa
 
Hi Barb,
While I can't contribute to the CC opinion as I have not dealt with anyone there, there are many member who have and I'm sure will speak up soon. I just want to give you a warm welcome and hope that you will feel comfort in knowing we are here to support you when you might not have anyone else to talk to. We have been there and understand you fears. Keep posting:)
 
Hi Barb, Welcome to our family. I was born with Pulmonary Stenosis 37 yrs ago and just had my valve replaced. I am a mother of 5 and I had the same feelings as you. How am I going to do this? My kids need me. My youngest is 4. You need to build a good support system in the people around you that will help. Luckily for me a good friend offered to watch the kids and help get them back to school when my symptoms became so bad in January that I couldn't even drive because of dizzy spells. I didn't have my operation until April.

It will all work out somehow, someway. I live in Wisconsin so can't really give you any advise about Cleveland. But welcome to the group and ask away. That's what we are here for. This forum has been the BIGGEST support to me before, during and after my surgery. Let us know when you have a date.
 
Thank You for the support!

Thank You for the support!

As I'm sure everyone here knows, being able to find people who understand means the world!

I did call the CC today and was more than a little frustrated when they told me they still haven't read my records. I know they are very busy there and that is what makes them the best but I have to wonder if there is such a thing as TOO busy. I'm just looking for signs to lead me to the right doc whoever that may be.

Melissa-Having a son with ds has been the greatest blessing of our lives. I felt like you-I always had a fondness for people with ds and hence studied spec ed. I keep telling people that the single hardest thing about having a child w/ special needs is just what I am going through now. Us moms of special kids like to think we will live forever you know lol. Please tell your friend that there are many wonderful forums like this if she's interested. I'd be happy to pass them along to her.

Laura- Do your dizzy spells occur while you are driving or are you avoiding driving because you are dizzy at other times? (sorry for the confusing question). I can't tell if I am having panic attacks while I am driving or symptoms that come on because of the position I am sitting in while driving. My shortness of breath just becomes more pronounced. I can't imagine not being able to drive at this point but I don't want to make a serious error in judgement either.

Thank you everyone.

Barb
 
Would like to say hello and welcome Barb,glad you found us,
sorry for reasons ,but happy your here,seems we've all cruised
together on this same ship for different reasons too.
Found the right place to be and lots of help here so ask away
always someone to help you out.

zipper2 (DEB)
 
"....seems we've all cruised
together on this same ship for different reasons too." What a great way to put it!

Welcome Barb. I remember being overwhelmed by this seemingly unsurmountable problem, and being frustrated that the medical attitude was "it will all work out"--but it all worked out.

I do remember reading here at some point that the CC is slow handling the paperwork, but great in getting you fixed once you're there, (but that's hearsay from me since I didn't go there). You could make another post with Cleveland Clinic in the subject line to get the experienced members attention if you want.

Best wishes,
Debby
 
Hi Barb and Welcome! I had a lot of dizziness. Yes, I had it while driving. For a long time the docs thought it was from something else. I had horrible headaches too. After OHS no headaches or dizziness. I hope CC gets back to you soon. I know that is frustrating. I have heard good things about University too, although CC is rated so high for the heart. Best of luck.
 
Hi Barb---

I had AVR at the CC in November of 2008. I had a terrible time getting a consultation there. I had to keep calling, and actually eventually got in touch with their "customer service" department because of problems. Once everything was set up, it all went well, but it was unbelievably frustrating. Let me know if I can be of help: [email protected]
 
The MOST IMPORTANT requirement for a Surgeon for a patient with an Aortic Aneurism is to find a surgeon with LOTS of EXPERIENCE repairing / replacing diseased Aortas. This type of surgery is a BIG STEP above and beyond "mere" Valve Replacement surgery.

You should be able to find a biography of Dr. Svensson's Medical Training and Experience / "Interests" on the CC Website or by doing a GOOGLE Search for his name. He is a well known surgeon. FWIW, I've not heard of the surgeon you mentioned from the other Cleveland Hospital.

Bottom Line: ASK every surgeon you interview just how many similar surgeries they have performed and what is their outcome. I would be looking for someone with Hundreds of Successful Outcomes.

'AL Capshaw'
 
Hi Barb. It took about 3.5 weeks from the time I sent them the records, to the day the surgeons nurse called me. From what I have learned there are a lot of steps between the time they receive your files, to when they are reviewed by the Doc. The surgeons review patient files in the down time between surgeries, so the exact time they look at your case is hard to determine, especially when factoring in vacations etc. After all they are human too, and can't work 24/7. I have seen first hand how CCF works, and believe me, they are not standing around goofing off. If you get really antsy, maybe have your Doc give them a call to see how things are looking. Hope this helps.

Steve
 
Barb, I'm not sure how long the review process took beforehand, but I do know that once my parents were in touch with Dr Svensson's secretary, his appointment was scheduled quickly and with a really short waiting period (one day it was this nebulous "sometime this summer" thing, and the next day it was going to happen in about three weeks). I haven't met the man myself and may not, but he seems to have done a good job. Good luck!
 
Barb,

I had a somewhat similar journey -- murmur and aortic regurg detected when I was in my 20s; monitored for years, and finally in my 60s valve leakage and root enlargement had gotten to the point that I had to have the root and valve replacement. I know it seems overwhelming, and yes you will need help with household work and child care while you are recovering, but you should do well and be able to go on with your life stronger than before.

Sending all my best thoughts and prayers ... welcome to the forum.
 
Thanks Barb :) I will ask you for a link to the forums if my friend would like to see them.

Meanwhile, hang in there and I hope you get in to the CC soon - being in the 'waiting room' is just terrible sometimes.

We're all thinking of you, keep us posted!

Melissa
 
Welcome Barb. My surgery was just two weeks ago at CC. I am so glad I took the nexcessary steps to go there. I did have a long wait for my first appointment. I began in the fall of 2008 when they were moving into the new heart building so there was some delay there....then I met with a surgeon in late October, he referred me on to Dr Gillinov who specializes in the mitral valve. I choose to wait until Spring as I could not see my husband and I navigating Cleveland during the snow season. Keep us update and again welcome.
 
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