I finally had my appointment with a doctor down at the University of Iowa last week. Since he felt that my case was complicated due to my GCA, he decided to take it to the risk management team which met on Tuesday. For some reason, they did not come up with a plan. He recommended that I see a rheumatologist, which I have been doing for the last 6 years! I struggle with that decision just because how he didn’t realize that fact! I told his nurse that I have been seeing a rheumatologist here in town, since 2018 and I trust him with my life! I’m passing on that recommendation of his and told them I didn’t understand how they did not have those records.
His second recommendation was that I get genetic testing. My question for her was how is that going to effect his decision on surgery or monitoring my aneurysm. She of course couldn’t answer. I am at my wits end here.
At my appointment, I did ask the doctor what his thoughts were if it was his decision , and he said surgery. Now I have to wait for another 2 weeks before I might get a decision. If any of you know how genetic testing can possibly help in any decision making going forward, I would really appreciate it. Thank you all for your past support!
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I understand your anxiety but most of my frustration would lie with the physician. Is he a specialist? Cardiac? If you have a meeting with risk management, how can you not have a plan to present to the patient? I know my son's had to exceed 5.0 before they would consider surgery....OK, come out of the meeting and say..."We are going to continue to monitor the size of the aneyrsm, you are in a safe place at 4.6, we'll scan again in ___ months." Referring you to a rheumatologist...? did he clarify his reasoning? Did you tell him you had been seeing one since 2018? The Doctor, not the nurse.
As far as genetic testing...I'm not at all knowledgeable. Could it be there are specific characteristics to the type of anyerism that is in your family? He did tell you he would recommend surgery....It is tough, but it sound like surgery is his choice....I'm sure this is so upsetting, I know. Would you like to have the surgery and be done with the worry? Is this doable for you now? Is the two week delay for genetic testing? Hugs💞
The problem I ran into was that I saw several different people before seeing the doctor. The person that went through my history, ie, medications past surgeries and so forth. The 2nd person who was the doctors assistant who went through my test results and explained a little bit about aneurysms, then the doctor. I assumed that while speaking to all of them when I referred to my doctor about how I’ve been treated for my GCA knew I was talking about my rheumatologist. Did I mention he was my rhuemy, I did not. Again I assumed they would know that a rheumatologist is the type of doctor that treats this disease.
Yes, I did expect an answer after the doctor met with the panel. I unfortunately got so frustrated while speaking with his nurse, that I got a bit short with her. I recognize it’s not her fault and apologized but reiterated the fact of frustration of just not understanding how this situation that suddenly became so much worse with the doctors recommendations. When she couldn’t explain, I asked if she could have the doctor call me so I could get some answers. She said she would send him a message. As of now, I have not heard a word. I’m confused about where I go from here. I’ve been waiting since July for this to be resolved.
Am I open to surgery? My thinking is surgery gives me the control to handle this now instead of constantly thinking that it could rupture at anytime. Where I am located does not have a doctor that specializes in aneurysms. I would get medical care here, but not by a surgeon that has the experience and expertise that I would need. Knowing that, I wonder if they could stabilize me in enough time to get to Iowa City.
I only know what the surgery entails by what I’ve read online. That was not discussed with me at my appointment because they were waiting for more information from the panel. Now the genetic testing is scheduled for next Friday. Who knows when or what will be decided after that.
Annoyingly frustrating! But a very common mis communication- I have run into one on more then one occasion. My husband says I need to stay calm and not assume knowledge in my consultant that perhaps is not there, or very clear. Staying calm is easy to say.. I do expect my doctor to be smart, but then they are often flooded with work. So daring to be tedious and repetitive is the way forward.
Aneurysms (very?) often do run in families, a friend of mine lost two elder siblings before doctors made the genetic connection. He is monitored every year, since his is a tricky operation they will only perform when absolutely necessary.
Be repetitive! And not having a plan is unacceptable - keep your cool but keep beating your drum. All the best!
Your response explained so much, and I get it. It would be similar in the States; sometimes, there are too many cooks in the stew! While living in Maine and needing a hip revision at age 77, I found I had to go to Portland, Maine, to get the best care. I've also traveled more than once to Chicago, Illinois, during my time in Indiana for surgery; it's just an hour away, and there is a world of difference in the level of care.
This was most telling to me: Am I open to surgery? My thinking is surgery gives me the control to handle this now instead of constantly thinking that it could rupture at anytime. Where I am located does not have a doctor that specializes in aneurysms. It sounds like you answered your own questions and concerns. It seems that seeking out the specialist of your choice would give you peace of mind, less stress by far, less worry and as much control as you can humanly have. Just thinking about 'being stabilized' would be enough for me to sign up. The Doctor who said he would recommend surgery is a specialist in aortic aneurysms.
When I was going for my hip revision, I was going to Mayo Clinic since I was an established patient, but my son and DIL researched, and one of the best 'hip men' was right there in Maine. You can learn a lot online from what they have published, such as the number of surgeries, etc. I've always been a fan of large teaching institutes.
I think you have answered your own questions. Breathe easy.💞
I feel for you as I had a subarachnoid haemorrhage in 2016 cause unknown midbrain bleed, I’m lucky it affected my limbs as they are still weak and my memory, thinking, cognitive impairment etc . It’s a worry knowing you have an aneurysm but as long as it’s being monitored. They do get things wrong in MDT meetings, my rheumatologist still thinks I’ve been using a rollator for several years when it’s actually only been since spinal surgery in 21, you feel like screaming at them! I really hope they monitor you closely and good luck.
My husband and his whole family have aneurysms. He had 10 operations for aneurysms. His last surgery was of the aorta. When we lived in NY his doctor kept telling him to wait( at that time it was a 4.6). We moved to Georgia and the cardio- thoracic surgeon said to my husband not to wait ( as you know an aneurysm is like a ticking time bomb) because my husband was in good health otherwise. He felt that he could sail through the operation nicely. He was right. The best to you.
I would recommend getting a second opinion at the Cleveland Clinic. They are the best hospital for vascular and heart issues. They have a team of interventional vascular doctors that can look at your scans and then make recommendations. I had my double bypass surgery of my intestinal arteries there and I knew I was in good hands for that surgery.
I posted yesterday, but don’t see it here. ( might be on your first. Post.)
I have Loeys- Dietz syndrome, a genetic connective tissue syndrome which puts people with this genetic mutation ( on the 14th chromosome) at risk for aneurysms - that’s what it’s really known for, along with muscle dislocations, tears, hernias, and GI trouble/ allergies.
Depending on the particular gene affected , there can be slight differences in presentation, re bone involvement and severity, etc.
my mother died of this… its autosomal dominant.
I’ll provide a link below to the Loeys Dietz foundation. There are pass of resources. There is a link to a nurse to ask questions, a list of providers for each state, diagrams of how each variant affects ( can affect) part of body, webinars, every think you need to get started. Do meter you email to sign ep for emails to access info. I’m never spammed.
Gretchen McCarrick is Dr Hal Dietz medical researcher, and has a son with Loeys Dietz. She helps with this site. Also it is run in tandem with a Facebook support for families, a separate facebook group. It’s excellent. I suggest to have a look there as well.
At 4.5 cm, surgery is usually preformed for ascending aorta root.
I’m in Texas- Houston has the top cardio thoracic in our state.
I find the whole story unbelievable! In the UK you would be identified as having an aneurysm of x cm diameter. Then monitored to see if it progressed to the size at which the risk of the aneurysm rupturing is greater than the risks associated with the operation - and then they operate. To put it bluntly - if an aneurysm ruptures there isn't much time to stablise you. Most wouldn't make it to hospital. The ones that do had an aneurysm that started to leak rather than burst.
As Grammy80 says - too many cooks in that stew and no-one wants to take responsibility. As for genetic testing - what's that got to do with the price of butter?
I talked to the nurse yesterday. She said that she would share my concerns with the doctor. My husband and I decided that Mayo might be a better bet, rather than be on pins and needles everyday than to deal with this doctor.
Like I mentioned, he was leaning towards surgery because of my GCA which is mainly in my large vascular system, and my family history. This genetic testing makes absolutely no sense to me at this point. I have been saying this since they addressed it with me. Maybe once I get a decision, then I’ll think about it. If I don’t get a decision within 24 hours, I will try to get in to Mayo in Minnesota. I’ll keep you updated, whether the price of butter is high or not!
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