I'm telling you, something ELSE is going on...
Now that I released the soundtrack to my dark night of the soul, who wants to delve back into what's been happening in my life?!
Keeping it interesting over here.
12.Dec.19 I visited my friend Eric at Arizona Doppler Specialists to have three month ultrasounds to check in on my jugular veins and left renal vein stents.
Great news, my left jugular and renal stents we're still patent.
Expected news, my right jugular continues to be completely obstructed with minimal collateral flow.
Since Eric knows a lot about CCSVI and he's a very competent ultrasound tech, I asked if he would take a look with the ultrasound at my inferior vena cava and iliac veins to check for anything abnormal.
He agreed and sure enough he found some compression of the left internal iliac vein! verified by the vascular surgeon who performs the official report for the ultrasounds.
For background:
The internal iliac vein (hypogastric vein) begins near the upper part of the greater sciatic foramen, passes upward behind and slightly medial to the internal iliac artery and, at the brim of the pelvis, joins with the external iliac vein to form the common iliac vein. -Wikipedia
After reaching out to the physicians who performed my procedures in Poland, I travelled to Tucson 20.December to visit Dr. Matthew Namanny (pronounced Nuh-man-ee) at Saguaro Surgical to get his opinion on next steps. He reads and creates the reports for the ultrasounds that Eric performs. He used to perform the CCSVI venoplasty a few years ago until things got politically charged.
At my visit he recommended a venogram (contrast dye is injected into the vein in question and use XRay to track the dye; see picture for example) and IVUS (intravascular ultrasound; see picture for example) to assess the compression as the next step.
I wasn't able to get the test scheduled before the end of the year so, more waiting...
His scheduler called the second week of January and I took the first available, 24.Jan at 7am.
Unfortunately and surprisingly, I had not made a calendar reminder for a very special date.
24.January my brother-in-law graduated from ARMY Ranger school. He completed all three phases (DARBY, Mountain and Swap) without "recycling" (having to repeat the phase) which is extremely rare (there were only 46 of 434 in his class who did as well).
Sixty-two days straight (minus his short break for the holiday) of very little sleep, food and protection from the elements. I don't know much about ARMY stuff, but I know you are a BA if you become a Ranger!
So, of course I rescheduled the venogram.
We flew to Georgia on Wednesday 22.Jan. His graduation ceremony was Friday 24.Jan. It was pretty awesome. Super proud.
My procedure was reschedule for 31.Jan so I didn't have to wait too long.
My husband and I drove to Tucson the evening of 30.Jan and had DELICIOUS hemp and quinoa tamales at the oldest Mexican restaurant in Tucson. El Charro cafe est 1922.
We stayed the night at the La Quinta Inn.
Do you know the difference between a hotel and a motel?
Well, let me learn you something.
In a HOTEL, the doors to the rooms open to an indoor hallway, inside the building.
At a MOTEL, the room doors open directly to the outdoors.
I haven't stayed in a MOTEL for a long time.
We definitely bolted the door if you know what I mean. And thankfully I always have my earplugs because the guy in the room next door was snoring extremely loud. I'm not saying I'm too good for a good old fashioned motel but it was a little sketchy.
I checked in for the procedure Friday morning @ 6:30, and a little after 7am walked into the OR.
I have to stop here and say that I am so thankful for my comfort with all the medical stuff.
Having worked as a Ortho Surgery PA for 13 years, it's like a second home for me. I feel so comfortable I never worry about having anxiety about any of it.
The OR staff and I had a great laugh to start things off so I am not going to lie, it was fun.
Anywho, I digress.
Back to it.
For the venogram the doc puts a small amount of numbing medication over the femoral vein in the groin. I got to have some PROPOPHOL this time (hooray!) for twilight sedation. He makes a small cut to insert a catheter in the femoral vein.
First he injects some dye and gets some images with the flouro (fancy for live XRay).
This is why the patient has to stay awake. The surgeon says "take a deep breath and hold it." When he's satisfied with the images, he threads up the IVUS to where he wants to get some sizes of the vein and double check the amount of compression. The IVUS is nice because as it's name implies, it's an ultrasound INSIDE the vein.
Sure enough there was significant compression of the internal iliac vein by the right common iliac artery.
In the picture below he's pointing to the distal (bottom) part of the internal iliac which becomes the femoral vein. Above his index finger is where the vein has become dilated due to a backup of blood flow because of the compression directly over it.
What's compressing the vein you ask?
Great question.
Laying over the internal iliac vein is the internal iliac artery. In some cases it compresses the underlying vein and causes disturbance in the blood flow. Since the artery is much more stiff with higher blood flow and the vein is so easily compressible, it's a set up for this to happen. Some people find out when they have a deep vein thrombosis there. What can also happen is that repetative compression can cause "spurs" inside the vein. Click on the link to read more about https://my.clevelandclinic.org/health/diseases/17213-may-thurner-syndrome
Because I haven't had some of the "classic" signs, ie. deep vein thrombosis, it's been a long road to have someone even look.
So, there's that.
Similar to when I was told I have MS, I had the immediate feeling of, "see, I KNEW there was something else going on!"
I'm so glad Simon had his phone to take some pictures.
I am planning to proceed with stent placement. Just don't know when yet.
Which symptoms are being caused by the compression? I do't know
Which symptoms might get better? I don't know.
Holding pattern.
YouTube -Spirit Lead Me
-IronTina
Keeping it interesting over here.
12.Dec.19 I visited my friend Eric at Arizona Doppler Specialists to have three month ultrasounds to check in on my jugular veins and left renal vein stents.
Great news, my left jugular and renal stents we're still patent.
Expected news, my right jugular continues to be completely obstructed with minimal collateral flow.
Since Eric knows a lot about CCSVI and he's a very competent ultrasound tech, I asked if he would take a look with the ultrasound at my inferior vena cava and iliac veins to check for anything abnormal.
He agreed and sure enough he found some compression of the left internal iliac vein! verified by the vascular surgeon who performs the official report for the ultrasounds.
For background:
The internal iliac vein (hypogastric vein) begins near the upper part of the greater sciatic foramen, passes upward behind and slightly medial to the internal iliac artery and, at the brim of the pelvis, joins with the external iliac vein to form the common iliac vein. -Wikipedia
After reaching out to the physicians who performed my procedures in Poland, I travelled to Tucson 20.December to visit Dr. Matthew Namanny (pronounced Nuh-man-ee) at Saguaro Surgical to get his opinion on next steps. He reads and creates the reports for the ultrasounds that Eric performs. He used to perform the CCSVI venoplasty a few years ago until things got politically charged.
At my visit he recommended a venogram (contrast dye is injected into the vein in question and use XRay to track the dye; see picture for example) and IVUS (intravascular ultrasound; see picture for example) to assess the compression as the next step.
I wasn't able to get the test scheduled before the end of the year so, more waiting...
His scheduler called the second week of January and I took the first available, 24.Jan at 7am.
Unfortunately and surprisingly, I had not made a calendar reminder for a very special date.
24.January my brother-in-law graduated from ARMY Ranger school. He completed all three phases (DARBY, Mountain and Swap) without "recycling" (having to repeat the phase) which is extremely rare (there were only 46 of 434 in his class who did as well).
Sixty-two days straight (minus his short break for the holiday) of very little sleep, food and protection from the elements. I don't know much about ARMY stuff, but I know you are a BA if you become a Ranger!
So, of course I rescheduled the venogram.
We flew to Georgia on Wednesday 22.Jan. His graduation ceremony was Friday 24.Jan. It was pretty awesome. Super proud.
My procedure was reschedule for 31.Jan so I didn't have to wait too long.
My husband and I drove to Tucson the evening of 30.Jan and had DELICIOUS hemp and quinoa tamales at the oldest Mexican restaurant in Tucson. El Charro cafe est 1922.
We stayed the night at the La Quinta Inn.
Do you know the difference between a hotel and a motel?
Well, let me learn you something.
In a HOTEL, the doors to the rooms open to an indoor hallway, inside the building.
At a MOTEL, the room doors open directly to the outdoors.
I haven't stayed in a MOTEL for a long time.
We definitely bolted the door if you know what I mean. And thankfully I always have my earplugs because the guy in the room next door was snoring extremely loud. I'm not saying I'm too good for a good old fashioned motel but it was a little sketchy.
I checked in for the procedure Friday morning @ 6:30, and a little after 7am walked into the OR.
I have to stop here and say that I am so thankful for my comfort with all the medical stuff.
Having worked as a Ortho Surgery PA for 13 years, it's like a second home for me. I feel so comfortable I never worry about having anxiety about any of it.
The OR staff and I had a great laugh to start things off so I am not going to lie, it was fun.
Anywho, I digress.
Back to it.
For the venogram the doc puts a small amount of numbing medication over the femoral vein in the groin. I got to have some PROPOPHOL this time (hooray!) for twilight sedation. He makes a small cut to insert a catheter in the femoral vein.
First he injects some dye and gets some images with the flouro (fancy for live XRay).
This is why the patient has to stay awake. The surgeon says "take a deep breath and hold it." When he's satisfied with the images, he threads up the IVUS to where he wants to get some sizes of the vein and double check the amount of compression. The IVUS is nice because as it's name implies, it's an ultrasound INSIDE the vein.
Sure enough there was significant compression of the internal iliac vein by the right common iliac artery.
In the picture below he's pointing to the distal (bottom) part of the internal iliac which becomes the femoral vein. Above his index finger is where the vein has become dilated due to a backup of blood flow because of the compression directly over it.
What's compressing the vein you ask?
Great question.
Laying over the internal iliac vein is the internal iliac artery. In some cases it compresses the underlying vein and causes disturbance in the blood flow. Since the artery is much more stiff with higher blood flow and the vein is so easily compressible, it's a set up for this to happen. Some people find out when they have a deep vein thrombosis there. What can also happen is that repetative compression can cause "spurs" inside the vein. Click on the link to read more about https://my.clevelandclinic.org/health/diseases/17213-may-thurner-syndrome
Because I haven't had some of the "classic" signs, ie. deep vein thrombosis, it's been a long road to have someone even look.
 |
| IVUS picture showing the vein being compressed; should be a red circle but the red pancake |
 |
| The whole thing should look like what he's pointing to |
So, there's that.
Similar to when I was told I have MS, I had the immediate feeling of, "see, I KNEW there was something else going on!"
I'm so glad Simon had his phone to take some pictures.
I am planning to proceed with stent placement. Just don't know when yet.
Which symptoms are being caused by the compression? I do't know
Which symptoms might get better? I don't know.
Holding pattern.
YouTube -Spirit Lead Me
-IronTina
I love you brave cousin warrior !!!!
ReplyDeleteWow, you have been through so much dince we last talked last summer! Kudos for not giving up! Blessings for continued success with your treatments. p.s. my brother is a retired Ranger...truly a BA �� (Dianna)
ReplyDelete