waiting vs. electing surgery now for your aneurysm

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Bigred

Bigred

Active member
Joined
Aug 14, 2009
Messages
33
Location
Poconos, PA
Hey guys,

Sorry to be posting so many questions lately

I have a 4.5 cm aneurysm, from what I've researched on Dr. Svensson from Cleveland Clinic (my first choice of surgeons) since I've had prior OHS he recommends the aortic aneurysm be 5.2 cm. Granted this is not from reviewing my personal charts but a general view.

Now, I do have chest pain, which I won't get my cardiologists view on this until Oct. but from what I gather it's very uncommon amongst patients w/ascending aneurysms. So this might be a moot point.

Question is, different members on the board make the suggestion to get the aneurysm fixed now vs. waiting. How does this work? If the surgeon you see suggests something different do you try and argue your point or do you shop around for another surgeon? I was under the impression (even though this is elective surgery) that as patients we follow the surgeons advice regarding watching and waiting vs surgery.

For all I know once Dr. Svensson gets my records he might suggest something other than waiting til it's at 5.2 cm, after all everyone is different, just curious if some of you went against the dr's suggestion and if so did you end up having a different surgeon than you first thought you would have.

Quite honestly, unless my symptoms get worse I plan to follow what Dr. Svensson recommends but I'd like to hear from some members who may have decided on their own behalf.
 
I think if you are having symptoms or if your heart is showing effects of the aneurysm (enlarged ventricle, lowered EF) then you push for the surgery. At that time I really don't see the point in waiting. Talk to cbdheartman, I think he just went through this and had his surgery already.

Please keep us posted.
 
The problem is, Doctors make you wait until at least 5.0, where the risk of rupture is greater then the risk of surgery. If your having chest pain, they had better be doing a catscan and make sure it isn't beginning to dissect like mine did.
 
Some Surgeons will take the patients desire to 'get fixed sooner rather than later' into consideration and some wont'. It doesn't hurt to ASK.

BTW, Ross neglected to mention that his aneurism disected at 4.7 cm.
So much for statistics!
 
Brian's dissected well under 5, statistics are great unless you are one of the exceptions to the rule....
 
Now, I do have chest pain, which I won't get my cardiologists view on this until Oct. but from what I gather it's very uncommon amongst patients w/ascending aneurysms. So this might be a moot point
Click to expand...

IF you are having chest pain, why are you waiting until October to talk to your doctor? have you called them and told them you are having chest pain?
 
Mine started as a chest pain and I did go to the ER and they MISSED IT! This was in November of 94. On March 9th, 1995 it ruptured. Same pain only 1000 times stronger. I wouldn't wish it on my worst enemy.
 
I explained the chest pain that I've been having to the cardiologist the best that I could. This was over the phone when he was giving me the results of the ct scan. I explained that it is in one specific area about an inch to the left of the sternum, can last a few seconds to a few minutes. Happens anytime during the day. exercise does not bring it on. Told him initially it was a dull pain but has been feeling different.

I said I had a similar dull pain for about two weeks in the winter and at that time I had chalked it up to the amt of snow shoveling I had done. He said with the way I was describing it that it sounded muscular. It's not my actual pectoralis muscle but I also know there are smaller muscle fibers attached to your pectoralis. He did not have the echo report yet but said he would review it and if there were any other concerns he would call but otherwise wanted to see me in 6 weeks (October).

I'm assuming if the aorta were beginning to dissect the ct scan and echo would reflect this correct?

And since I haven't heard back from the cardiologist I'm assuming there were no significant findings and it's possible this pain I feel may be unrelated.
 
I'd be on the phone hounding him for results and get copies of everything. The CT scan, depending on how well it was done, should show a dissection beginning, but only if they used contrast dye. I'm not buying muscle pain, but then again, I went through this and it started as a sudden dull pain which at the time, I couldn't distinguish between it and the lung pains I've had from Hemosiderosis. I just knew it felt different. Heck, even when mine ruptured, they passed a catheter right through it and never saw it!
 
I've already put in a request for copies of my records. This was almost 2 weeks ago and the medical records dept said to allow up to another 2 weeks for receipt on my end. But apparently I have to put in a separate request for a copy of the echo report on cd since this is what Cleveland Clinic prefers.

Ross & Lynlw-
Ct scan was done w/contrast Aug 19.

If anything changes before my scheduled appt in Oct, type of pain, length of time it stays with me, etc. I plan to inform the cardiologist and either see him right away or go to the local hospital. But assuming everything stays the same, during my next appt I would like to hear firsthand from the staff cardiologist at Deborah and not just the "fellow" cardiologist regarding the chest pain and location. However, I'm thinking that if it's determined my chest pain is not related to the aneurysm then Dr Svensson is going to suggest watching and waiting just as Deborah Heart & Lung is suggesting due to the prior OHS for AVR.
 
As someone who tortured folks on this board with my questions (not saying you are torturing anyone -- but search back in May and June for all my posts!), this has to be an individual's decision. My aneurysm measured anywhere between 4.8 and 5.2 cm depending on who was reading it. It had grown at a slow rate from 2004 (4.2 cm) to this year's measurement which was essential around 5.0 cm. (I have yet to see the operative notes, but I gather my aneurysm was about 5 cm.) I was told by Dr. Svensson to wait until 5.1 or 5.2. (I measured in at 4.9 according the CC radiologist.) Dr. Cameron also recommended waiting until 5.5 cm and could not remember any of his patients ever dissecting or rupturing before they reached the magic number so beyond statistics he was basing it on his own experience.

After Dr. Cameron looked at my echo he believed he could spare his valve and he never said it explicitly, but his threshold seemed to move down to 5.0 cm and he said I was close enough that it had to be my decision and that he couldn't argue against going forward.

Ultimately, looking at the continuing risks of dissection and/or rupture, coupled with the psychological burden, plus the physical limitations (Dr. Cameron told me that I could lift a maximum of around 30 lbs; both my kids weigh about that much, so I would have been looking at a few years of not lifting my children while I waited for my aneurysm to grown), I could not see the reason in waiting. The logic, which folks on this board helped me see, was that a) I was going to have to have the surgery eventually; b) there were small, but not insignificant risks of rupture or dissection that were likely higher than the one time risk of surgery; and c) my own personality would not have allowed me to be at peace about it. Now some people can put it out of mind and having been through OHS you know the pain and recovery so you might be of the mind that you'd like to put that off as long as possible. Most likely that won't be a problem.

One other suggestion, if you are anywhere near Hopkins, I would suggest a consultation with Dr. Dietz and his genetics lab who specialize in connective tissue issues. My guess is that they would more conservative/aggressive in their recommendation and tell you to do surgery now. Now Dietz is a cardiologist and not a surgeon, but I would seek him out if possible (I haven't met with him yet just his staff).
 
cbdheartman-
thanks for the info. had no intent of torturing the board w/my posts. I understand you weren't saying I was, just letting you know I wasn't planning on letting it get to that. I just had some questions that I couldn't locate when using the search function.

thanks to everyone for their input thus far.
 
I don't know maybe I am missing something, but if I had chest pain, and an aneurysm at the same time, my butt would be in the ER at least to check the chest pain, no one can diagnose over the phone. You know you are not that far from NYC you may want to get a second opinion from a surgeon. There are a number of leading hosptials that specialize in aneurysyms.... not that I am biased but, NYU, Columbia Presbyterian, Lenox Hill and my chioce Dr. Adams & DiLuozzo @ Mount Sinai.

Linda
 
Dr. Svensson just did my surgery in July. My aneurysm was diagnosed at 4.5 about a year and a half before my surgery and I was told to wait (not by Dr. Svensson). After mine grew to 5.2 I was referred to a surgeon at a different hospital than CC. I soought out Dr. Svensson on my own and was convinced to go with him after learning that he is the expert in this type of surgery. After I went through the testing at the CC in June they came up with a measurement of 5.7. Of course Dr. Svensson told me the time was NOW. I'm not sure why the change in measurement between my CT scan and echo in May and the same tests plus a catheterization at the CC. I don't know if their calculations were different or if it grew in that month.

When you do find yourself ready I can tell you that you will be in good hands with Dr Svensson. My surgery went beautifully and my recovery as well. My valve and aorta were in worse shape than even he thought when he went in but still all went well and surgery was quicker than expected as was my time on the vent and in ICU. He really is good at what he does as you already know.

I would get the pain checked out asap and then include the results if there are any in your info you send to Dr. Svensson. In my testing at the CC I was seen by a cardiologist who I liked very much (Dr. Stewart). He spent way more time with me than Svensson did ( I think that's fairly typical of surgeons) and I was definitely asked if I had any chest pain as part of the exam. I think with a known heart condition of any kind pain is something to take seriously.

Good luck.
 
Bigred,
It is OK to "torture", that's why we are here. And we don't even see it as torture. Sometimes it really rather makes us happy to be able to convince a stubborn lawyer like cdbheartman, outside the court, to see the logic in doing the surgery well before the yearly risk of rupture is larger than the risk of operation in itself. This probably occurs somewhere between 4,5-5 cm, at least before the 5,2 cm you mention.

I didn't know about this forum before surgery and was stupid enough to push back my surgery despite being at 5,3 cm. I ended up in a dissection and a small rupture that started in the heart (ironically, this saved me, but gave me a pacemaker instead).

You are getting close to the more obvious point to call for a surgery. The chest pain needs to be investigated and taken into account. But 4,5 cm might not be there yet, but is your call with the guidance of the surgeons.

::g
 
Mine was 6cm when discovered in '89. The surgeon was not that worried and scheduled me 6 wks later for surgery. During this surgery, the aorta fell apart in his hands, and so had to be cut out rather than just opened and used as a wrap for the dacron graft. The surgeon learned a lesson I'm sure.
 
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