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Suggest Treatment For Superior Vena Cava Syndrome
Question: Sorry so complicated.
I was diagnosed with superior vena cava (SVC) syndrome in July 2011 from a blood clot related to lupus. I remember it burned when the line was flushed and a had difficulty breathing and laying flat. A lot of chest pain that I could feel in my back too between the shoulder blades. Faces, eyes, and neck swelled and I was on home oxygen because my pulse ox was low. XXXXXXX Presbyterian Hospital in NYC was considering bypass surgery but there was no distal target that was open. Angioplasty was performed with limited success and when I started to swell again I stopped breathing. I was placed on a ventilator for about 2 days. Since this episode, I have had several angioplasties to correct the problem but was not successful at Mayo Clinic, Banner etc. Then I was referred to Stanford and had sharp recanalization performed with stent placement two years ago (4 to 5-hour surgery). Stanford was also able to place an 18 Gauge double lumen line through the expandable Smart stents. My condition greatly improved. However, I needed several angioplasties during the next two years when symptoms developed. The central line was in during procedures until it developed a hole and couldn't be fixed. An IR doctor put another 18 Gauge line in but it became infected and I became septic quickly. I was in the hospital twice needing IV antibiotics. A third line was placed in my L arm, wich caused my arm to swell because everything is occluded on the L-side. Finally, IR doc was able to remove central line from my arm and place another 18-Gauge central line in my right chest but it snapped. I have to pumps running 24 7 so I had to go to ER for access. Then a surgeon I did not know put a 15-Gauge double lumen central line in R chest and through stent--I believe--after I told him that my vein and stent needed a smaller line. I had the 18-Gauge central line with me and showed him. My symptoms of SVC syndrome are returning and I want to know if the line may be too large for the vein and stent? I have chest pain, edema of eyes, face, neck in the morning, bulging veins between ribs that are very painful and severe headache. Diuretics help the fluid overload but not enough. My left side is occluded so the SVC and collaterals are the only open area for draining of my upper body. Would a smaller line help? I have an IR doctor willing to replace the 15-gauge double lumen central line with the smaller 18-gauge line.
I was diagnosed with superior vena cava (SVC) syndrome in July 2011 from a blood clot related to lupus. I remember it burned when the line was flushed and a had difficulty breathing and laying flat. A lot of chest pain that I could feel in my back too between the shoulder blades. Faces, eyes, and neck swelled and I was on home oxygen because my pulse ox was low. XXXXXXX Presbyterian Hospital in NYC was considering bypass surgery but there was no distal target that was open. Angioplasty was performed with limited success and when I started to swell again I stopped breathing. I was placed on a ventilator for about 2 days. Since this episode, I have had several angioplasties to correct the problem but was not successful at Mayo Clinic, Banner etc. Then I was referred to Stanford and had sharp recanalization performed with stent placement two years ago (4 to 5-hour surgery). Stanford was also able to place an 18 Gauge double lumen line through the expandable Smart stents. My condition greatly improved. However, I needed several angioplasties during the next two years when symptoms developed. The central line was in during procedures until it developed a hole and couldn't be fixed. An IR doctor put another 18 Gauge line in but it became infected and I became septic quickly. I was in the hospital twice needing IV antibiotics. A third line was placed in my L arm, wich caused my arm to swell because everything is occluded on the L-side. Finally, IR doc was able to remove central line from my arm and place another 18-Gauge central line in my right chest but it snapped. I have to pumps running 24 7 so I had to go to ER for access. Then a surgeon I did not know put a 15-Gauge double lumen central line in R chest and through stent--I believe--after I told him that my vein and stent needed a smaller line. I had the 18-Gauge central line with me and showed him. My symptoms of SVC syndrome are returning and I want to know if the line may be too large for the vein and stent? I have chest pain, edema of eyes, face, neck in the morning, bulging veins between ribs that are very painful and severe headache. Diuretics help the fluid overload but not enough. My left side is occluded so the SVC and collaterals are the only open area for draining of my upper body. Would a smaller line help? I have an IR doctor willing to replace the 15-gauge double lumen central line with the smaller 18-gauge line.
Brief Answer:
I would recommend as follows:
Detailed Answer:
Hello!
Thank you for asking on HCM!
I understand your concern; its really too complicated (so many unsuccessful interventions[bypass; stents, central catheters]).
Seems that SVC syndrome is clinically returning again, so it is important to clearly define the level of obstruction by means of several imagine and physiological studies.
To clearly investigate if that 15-gauge double lumen central line is not functioning properly (and there are evident odds this latter is true), it is important to measure a pressure gradient through the catheter.
A sonogram would yield valuable information about venous pulsatility and respiratory phasicity, indication thus the severity of blood flow obstruction.
A MRI (magnetic resonance imagine), when performed in highly specialized centers, may provide clues to direct visualization of blood flow, and hence severity of intraluminal obstruction.
Only after a complete diagnostic workup to clarify what's going on with the stent/catheter patency, a right decision could be drawn (a catheter replacement, new attempt of surgical SVC reconstruction, or other trial of angioplasty).
Meanwhile, symptomatic relief medications (diuretics, oxygen, optimal head positioning, etc), should be continued as they improve functionality.
If you could provide some direct medical data on the actual diagnostic reports (upload reports), I could give a more concrete opinion on a suitable management strategy.
Hope to have been helpful!
Feel free to ask me whenever you need! Greetings! Dr. Iliri
I would recommend as follows:
Detailed Answer:
Hello!
Thank you for asking on HCM!
I understand your concern; its really too complicated (so many unsuccessful interventions[bypass; stents, central catheters]).
Seems that SVC syndrome is clinically returning again, so it is important to clearly define the level of obstruction by means of several imagine and physiological studies.
To clearly investigate if that 15-gauge double lumen central line is not functioning properly (and there are evident odds this latter is true), it is important to measure a pressure gradient through the catheter.
A sonogram would yield valuable information about venous pulsatility and respiratory phasicity, indication thus the severity of blood flow obstruction.
A MRI (magnetic resonance imagine), when performed in highly specialized centers, may provide clues to direct visualization of blood flow, and hence severity of intraluminal obstruction.
Only after a complete diagnostic workup to clarify what's going on with the stent/catheter patency, a right decision could be drawn (a catheter replacement, new attempt of surgical SVC reconstruction, or other trial of angioplasty).
Meanwhile, symptomatic relief medications (diuretics, oxygen, optimal head positioning, etc), should be continued as they improve functionality.
If you could provide some direct medical data on the actual diagnostic reports (upload reports), I could give a more concrete opinion on a suitable management strategy.
Hope to have been helpful!
Feel free to ask me whenever you need! Greetings! Dr. Iliri
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Hi, I have provided some attachments. Please review them.
Dr. Sharka,
I think I was able to attach/upload reports from three great hospitals. It looks like you may get two of them twice....sorry!
Hope this helps some. I am concerned about the swelling and bulging veins and think the 15 Gauge central line is decreasing blood flow hence all the fluid retension.
Please let me know what you think. And should I act quickly before things get worse?
Thanks again,
XXXX
Dr. Sharka,
I think I was able to attach/upload reports from three great hospitals. It looks like you may get two of them twice....sorry!
Hope this helps some. I am concerned about the swelling and bulging veins and think the 15 Gauge central line is decreasing blood flow hence all the fluid retension.
Please let me know what you think. And should I act quickly before things get worse?
Thanks again,
XXXX
Brief Answer:
You should consult your attending doctor and follow the diagnostic workup.
Detailed Answer:
Hello again dear XXXX!
I carefully reviewed all your uploaded medical reports and I would say that a great job has been done from those respective specialized medical teams.
As they report, after repeated venous angioplasty, there has always remained mild to moderate stenoses (distal right internal jugular vein / right subclavian vein / right brachiocephalik to SVC in the region of stent implantation).
After each report, a constant recommendation for additional angioplasty requirements has been confirmed, as you are suffering a chronic SVC syndrome and no medical procedure could yield a definitely successful everlasting result..
For the more possible repeated lupus flares may be responsible for such a relapsing clinical deterioration (relapsing stenoses).
Facing all the above medical history, I would recommend that the best strategy for addressing such an issue, is to consult with your attending physician (vascular specialist) and discuss for the possibility or rechecking those relapsing stenoses by venograms; also performing hemodynamics measurements (pressure gradients through several certain sites including central line catheter). This will clarify the uncertainty about 15 Gauge central line.
Possible angioplasty procedures may be necessary, coupled with central venous line revision (even its replacement).
Properly addressing possible lupus flares implications is important too. You need to discuss with a lupus specialist.
I think you should consult your attending medical team without delay and follow the diagnostic workup for resolving your current complains.
Wish you good health!
Regards,
Dr. Iliri
You should consult your attending doctor and follow the diagnostic workup.
Detailed Answer:
Hello again dear XXXX!
I carefully reviewed all your uploaded medical reports and I would say that a great job has been done from those respective specialized medical teams.
As they report, after repeated venous angioplasty, there has always remained mild to moderate stenoses (distal right internal jugular vein / right subclavian vein / right brachiocephalik to SVC in the region of stent implantation).
After each report, a constant recommendation for additional angioplasty requirements has been confirmed, as you are suffering a chronic SVC syndrome and no medical procedure could yield a definitely successful everlasting result..
For the more possible repeated lupus flares may be responsible for such a relapsing clinical deterioration (relapsing stenoses).
Facing all the above medical history, I would recommend that the best strategy for addressing such an issue, is to consult with your attending physician (vascular specialist) and discuss for the possibility or rechecking those relapsing stenoses by venograms; also performing hemodynamics measurements (pressure gradients through several certain sites including central line catheter). This will clarify the uncertainty about 15 Gauge central line.
Possible angioplasty procedures may be necessary, coupled with central venous line revision (even its replacement).
Properly addressing possible lupus flares implications is important too. You need to discuss with a lupus specialist.
I think you should consult your attending medical team without delay and follow the diagnostic workup for resolving your current complains.
Wish you good health!
Regards,
Dr. Iliri
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thanks,
I totally agree. However, I sent you the reports on the IR doctors. The 15 G line was placed by an on-call doc that I will not see again because I told him about using the 18 G line but he didn't. Yesterday I say my lupus doctor and more symptoms are developing.
Hives, fever 100.0, bulging veins, and puffiness, sweats worsening and he was most concerned with the headaches and myopia and nystagmus he saw yesterday at his office.
Actually, I am going to the hospital now.
Will let you know what happens. Don't have time to travel to Stanford, XXXXXXX or Banner right now. Really wish I could.
Thabks again,
XXXX
I totally agree. However, I sent you the reports on the IR doctors. The 15 G line was placed by an on-call doc that I will not see again because I told him about using the 18 G line but he didn't. Yesterday I say my lupus doctor and more symptoms are developing.
Hives, fever 100.0, bulging veins, and puffiness, sweats worsening and he was most concerned with the headaches and myopia and nystagmus he saw yesterday at his office.
Actually, I am going to the hospital now.
Will let you know what happens. Don't have time to travel to Stanford, XXXXXXX or Banner right now. Really wish I could.
Thabks again,
XXXX
Brief Answer:
You are welcome!
Detailed Answer:
Hello XXXX!
A comrehensive investigation of lupus condition and actual venous circulation, will help to determine the exact management strategy regarding your current clinical scenario.
Please let me know how is going to be proceeded!
Wish you good health!
Regards,
Dr. Iliri
You are welcome!
Detailed Answer:
Hello XXXX!
A comrehensive investigation of lupus condition and actual venous circulation, will help to determine the exact management strategy regarding your current clinical scenario.
Please let me know how is going to be proceeded!
Wish you good health!
Regards,
Dr. Iliri
Note: For more detailed guidance, please consult an Internal Medicine Specialist, with your latest reports. Click here..
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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