1. < Aortic Aneurysms

How to find doctors specializing in Celiac Aortic Aneurysm?

Posted by khanni @khanni, Dec 10, 2021

Extremely rare type of aneurysm. Apparently cannot be repaired via stent so looking at open surgery. Difficult to find a doc who has specific celiac aneurysm experience. Just wondering if any one has personally had this issue, know of someone who has or know of a doc who has this specialty. Thank you.

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 11, 2021

Hello @khanni

As I see this is your first post on Mayo Clinic Connect, let me welcome you! You are wise to seek information and to get support from others. Any rare condition tends to cause stress. I have had a rare type of cancer and I drive about an hour to a well-known university medical school for my treatment.

We have other members who have this type of aneurysm, here is a link to that discussion, https://connect.mayoclinic.org/discussion/celiac-artery-aneurysm/. I would like to personally invite some of those members to join you in posting about their experiences. @henrya3, @kellyann75, @tallbeachbum, @auntbrenda44

In order for them to understand better about your situation, would you be willing to share the size of your aneurysm? Has your doctor prescribed any meds, such as blood pressure medications or has he/she given you any restrictions?

You are very wise to look for the best doctor possible to treat this. For rare disorders, of any type, multi-disciplinary medical centers are very good as they have a lot of research going on and they can treat the most difficult problems in the best way. As I mentioned earlier, in my own case, I drive about an hour to go to a university medical center and for another type of specialty surgery, I have driven 3.5 hours in order to find the best specialist.

Do you live near a university medical school or perhaps a facility like Mayo Clinic?

REPLY
2 replies
khanni | @khanni | Dec 11, 2021
In reply to @hopeful33250 "Hello @khanni As I see this is your first post on Mayo Clinic Connect, let me..." + (show)
@hopeful33250

Hello @khanni

As I see this is your first post on Mayo Clinic Connect, let me welcome you! You are wise to seek information and to get support from others. Any rare condition tends to cause stress. I have had a rare type of cancer and I drive about an hour to a well-known university medical school for my treatment.

We have other members who have this type of aneurysm, here is a link to that discussion, https://connect.mayoclinic.org/discussion/celiac-artery-aneurysm/. I would like to personally invite some of those members to join you in posting about their experiences. @henrya3, @kellyann75, @tallbeachbum, @auntbrenda44

In order for them to understand better about your situation, would you be willing to share the size of your aneurysm? Has your doctor prescribed any meds, such as blood pressure medications or has he/she given you any restrictions?

You are very wise to look for the best doctor possible to treat this. For rare disorders, of any type, multi-disciplinary medical centers are very good as they have a lot of research going on and they can treat the most difficult problems in the best way. As I mentioned earlier, in my own case, I drive about an hour to go to a university medical center and for another type of specialty surgery, I have driven 3.5 hours in order to find the best specialist.

Do you live near a university medical school or perhaps a facility like Mayo Clinic?

Jump to this post

Teresa. Thank you for reaching out and welcoming me. I wish you well in your treatment journey. My celiac is 2.2cm which is the size at which they recommend doing surgery. I have been on blood pressure meds for a few years. I also had thoracic aneurysm surgery in 2018. The vascular surgeon handling my case has performed two celiac surgeries in his career. He is recommending open surgery rather than a stent which adds risk as well and supports me getting a second opinion. We are 30 minutes from IU Medical Center in Indianapolis and 3 hours from Northwestern Medical Center in Chicago. Thank you again. It means a lot to hear from somebody. Kevin

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 11, 2021

Hello @khanni,

I'm glad to have provided you with some additional information that might help you make an informed decision about surgery. It sounds as if you have some good places to seek a second opinion. As this sounds like your second aneurysm, have other family members had this as well?

Will you post again with an update about your research and decision?

REPLY
1 reply
khanni | @khanni | Dec 11, 2021
In reply to @hopeful33250 "Hello @khanni, I'm glad to have provided you with some additional information that might help you..." + (show)
@hopeful33250

Hello @khanni,

I'm glad to have provided you with some additional information that might help you make an informed decision about surgery. It sounds as if you have some good places to seek a second opinion. As this sounds like your second aneurysm, have other family members had this as well?

Will you post again with an update about your research and decision?

Jump to this post

My dad had an abdominal aneurysm but not a celiac. My vascular doc said they are not necessarily hereditary. Will definitely keep you posted.

REPLY
mdpetoskey | @mdpetoskey | Nov 20, 2023
In reply to @hopeful33250 "Hello @khanni As I see this is your first post on Mayo Clinic Connect, let me..." + (show)
@hopeful33250

Hello @khanni

As I see this is your first post on Mayo Clinic Connect, let me welcome you! You are wise to seek information and to get support from others. Any rare condition tends to cause stress. I have had a rare type of cancer and I drive about an hour to a well-known university medical school for my treatment.

We have other members who have this type of aneurysm, here is a link to that discussion, https://connect.mayoclinic.org/discussion/celiac-artery-aneurysm/. I would like to personally invite some of those members to join you in posting about their experiences. @henrya3, @kellyann75, @tallbeachbum, @auntbrenda44

In order for them to understand better about your situation, would you be willing to share the size of your aneurysm? Has your doctor prescribed any meds, such as blood pressure medications or has he/she given you any restrictions?

You are very wise to look for the best doctor possible to treat this. For rare disorders, of any type, multi-disciplinary medical centers are very good as they have a lot of research going on and they can treat the most difficult problems in the best way. As I mentioned earlier, in my own case, I drive about an hour to go to a university medical center and for another type of specialty surgery, I have driven 3.5 hours in order to find the best specialist.

Do you live near a university medical school or perhaps a facility like Mayo Clinic?

Jump to this post

I had gastro issues and they just found the Celiac Aortic Aneurysm. I am in a northern area with limited healthcare or have o drive to Univ MI or pick a solution in Naples FL. Does Mayo iffer a FL resource? I am open to sharing info on my case.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 21, 2023
In reply to @mdpetoskey "I had gastro issues and they just found the Celiac Aortic Aneurysm. I am in a..." + (show)
@mdpetoskey

I had gastro issues and they just found the Celiac Aortic Aneurysm. I am in a northern area with limited healthcare or have o drive to Univ MI or pick a solution in Naples FL. Does Mayo iffer a FL resource? I am open to sharing info on my case.

Jump to this post

Hello @mdpetoskey and welcome to Mayo Connect. Mayo Clinic does have a facility in Jacksonville, Florida. If you are interested in a consultation there, here is a link with information on how to obtain an appointment, http://mayocl.in/1mtmR63.

How long ago was the Celiac Aortic Aneurysm diagnosed?

REPLY
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