Yes, I'd like to hear more from the people who have had stents put in. Are they made of the type of metal (is it a nickel and titanium mix??) that will allow you to have future MRI's?
Follow-upcare?
CCSVI in Bulgaria
Hey, everyone.
My wife has just gone into theater for her procedure. It was a bit of a surprise as we checked in today and were expecting there to be several days before it would happen.
We arrived Sofia Saturday and are here until next Saturday. Arrived at the hospital this morning. My wife had her ECG, Blood pressure, Doppler and then blood tests. They took us upto our room (a double with TV, on-suite and small seating area). Pre-med was given about 2 hours ago and they came to collect her 15 minutes ago. She is 75% blocked in one vein.
They have a definitive picture once the procedure begins and, only if necessary, they stent.
If anyone is listening now, please keep your fingers crossed for us. I will update as soon as I can, and give running commentary about the post op etc.
The staff here are excellent. We have had an english speaking nurse with us all the way to the room. Food has been ordered for the duration of the stay already (a menu was given to us).
We are staying at the Hilton post op.
Robob.
My wife has just gone into theater for her procedure. It was a bit of a surprise as we checked in today and were expecting there to be several days before it would happen.
We arrived Sofia Saturday and are here until next Saturday. Arrived at the hospital this morning. My wife had her ECG, Blood pressure, Doppler and then blood tests. They took us upto our room (a double with TV, on-suite and small seating area). Pre-med was given about 2 hours ago and they came to collect her 15 minutes ago. She is 75% blocked in one vein.
They have a definitive picture once the procedure begins and, only if necessary, they stent.
If anyone is listening now, please keep your fingers crossed for us. I will update as soon as I can, and give running commentary about the post op etc.
The staff here are excellent. We have had an english speaking nurse with us all the way to the room. Food has been ordered for the duration of the stay already (a menu was given to us).
We are staying at the Hilton post op.
Robob.
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Taps
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Great hearing about the successful treatment! Hope all outcomes are positive for any MS issues being experienced.robob wrote:1.5 hours and my wife returned...
...
Robob.
Thanks for all the info and the play by play....
Best of luck...
T.
Last edited by Taps on Mon Jun 28, 2010 2:55 pm, edited 2 times in total.
Taps
cheers
Hey robob,
I read your post this morning and got so excited for you and your wife. Thanks for keeping us all posted. Hope she has many more successes. My husband goes in Sept. Bit of a wait but all the postings give us so much info and support. We are cheering her on!
All the Best
Papa
I read your post this morning and got so excited for you and your wife. Thanks for keeping us all posted. Hope she has many more successes. My husband goes in Sept. Bit of a wait but all the postings give us so much info and support. We are cheering her on!
All the Best
Papa
Good morning, all.
Thanks to Taps, Ales, Bill and Terry, and to Papa for your kind words and thoughts.
So, it was a reasonable night. Mrs Robob was a little uncomfortable following the procedure. They place a weight against your groin where the entry point was. This is probably to prevent bleeding. This was removed after a few hours and following another examination to make sure everything was okay.
Medication includes an anti blood clot pill and asprin three times a day. Not sure what will be prescribed before we leave.
The drip was removed once it ran dry leaving only one IV attachment (you start with 2).
10pm was another routine blood test and then we turned out the lights to get some sleep.
The second attachment ran out at 2am resulting in an alarm going off. We pressed the buzzer thingy and a nurse turned up and replaced with another refill and gave Mrs Robob something for the pain.
Back to sleep until 6am when the nurse came in, removed the 2nd attachment (leaving in the IV needle), removed the dressing and left us again.
Breakfast came at about 8:30 after which a whole bunch of people came in!
4 people turned up, Dr. G, an English speaking lady doctor and two other (not sure if they were doctors or not). They brought the doppler scanner in with them and ran through the usual questions etc. Mrs. Robob then had another doppler scan whilst in bed and we got the news we wanted. The obstructions have completely gone, the operation....was a complete success.
We have been given a questionnaire about the procedure and after affects although truth be told, its probably too soon to be sure of the results etc.
Mrs Robob has suffered with fatigue, dizzyness, mental 'fog' and muscle pain probably from MS. This morning, she feels 'clearer'. It is hard to say what the results are because they may be confused by virtue of the fact that she has been through surgery. I wish I could give more. She now has no real pain from the procedure (which finished only 18 hours ago) but is a little stiff, bruised and tired. True, she feels as though she has been through the mill a bit but now its all over.
We have another day in the hospital and check out tomorrow morning. There is a restaurant on the 9th floor, also a shop, I'll update on those later.
If anyone has any questions, post them here and I'll try to answer them for you.
Thanks again for your support, hopes and prayers.
Robob.
Thanks to Taps, Ales, Bill and Terry, and to Papa for your kind words and thoughts.
So, it was a reasonable night. Mrs Robob was a little uncomfortable following the procedure. They place a weight against your groin where the entry point was. This is probably to prevent bleeding. This was removed after a few hours and following another examination to make sure everything was okay.
Medication includes an anti blood clot pill and asprin three times a day. Not sure what will be prescribed before we leave.
The drip was removed once it ran dry leaving only one IV attachment (you start with 2).
10pm was another routine blood test and then we turned out the lights to get some sleep.
The second attachment ran out at 2am resulting in an alarm going off. We pressed the buzzer thingy and a nurse turned up and replaced with another refill and gave Mrs Robob something for the pain.
Back to sleep until 6am when the nurse came in, removed the 2nd attachment (leaving in the IV needle), removed the dressing and left us again.
Breakfast came at about 8:30 after which a whole bunch of people came in!
4 people turned up, Dr. G, an English speaking lady doctor and two other (not sure if they were doctors or not). They brought the doppler scanner in with them and ran through the usual questions etc. Mrs. Robob then had another doppler scan whilst in bed and we got the news we wanted. The obstructions have completely gone, the operation....was a complete success.
We have been given a questionnaire about the procedure and after affects although truth be told, its probably too soon to be sure of the results etc.
Mrs Robob has suffered with fatigue, dizzyness, mental 'fog' and muscle pain probably from MS. This morning, she feels 'clearer'. It is hard to say what the results are because they may be confused by virtue of the fact that she has been through surgery. I wish I could give more. She now has no real pain from the procedure (which finished only 18 hours ago) but is a little stiff, bruised and tired. True, she feels as though she has been through the mill a bit but now its all over.
We have another day in the hospital and check out tomorrow morning. There is a restaurant on the 9th floor, also a shop, I'll update on those later.
If anyone has any questions, post them here and I'll try to answer them for you.
Thanks again for your support, hopes and prayers.
Robob.
post-ccsvi
hi, i got liberated on the 9th of june. op went well and doc's were happy, but since i got home my right shoulder up to me neck has been very sore and hard to straighten out, (this is my good side and i dont wana see it go...). I rang tokuda and one of dr. drodinski's doc's siad that it have been damaged in op???? anyone else have this problem?? i went for a massage yesterday, she told me that it definitely wasnt the muscle that was hurting and looks like it damaged somehow????
Anyway, i go back to tokuda to get it checked next wednesday!!!!
So anyone else had this problem and had to go back???????
john
Anyway, i go back to tokuda to get it checked next wednesday!!!!
So anyone else had this problem and had to go back???????
john
Hey Robob congrats! Im recovering in Greenville and feel good about everything Ive done so far so good.
I do know some people have slight problems but nothing that cant be fixed. The girl that got done the same day as me has had to get it done again. They scan you again before you leave to make sure all okay. My friend found out that the vein she got the stent at had closed at he opposite end of where the stent was placed. Because of this she had to get it done again! Hopefully all will be ok
Devine - there was talk of stent when they were doing the op and at that point I was just letting Petrov do what he felt necessary. It turned out in his expert opinion that he felt it didnt need the stent after all. When I got scanned again the veins were open at 80% so not at optimum but wide enough for the vein to work normally the lady doctor said. My friend did ask what the stent was made of so I will send it in when I get the answer.
Cheers
Koko
I do know some people have slight problems but nothing that cant be fixed. The girl that got done the same day as me has had to get it done again. They scan you again before you leave to make sure all okay. My friend found out that the vein she got the stent at had closed at he opposite end of where the stent was placed. Because of this she had to get it done again! Hopefully all will be ok
Devine - there was talk of stent when they were doing the op and at that point I was just letting Petrov do what he felt necessary. It turned out in his expert opinion that he felt it didnt need the stent after all. When I got scanned again the veins were open at 80% so not at optimum but wide enough for the vein to work normally the lady doctor said. My friend did ask what the stent was made of so I will send it in when I get the answer.
Cheers
Koko
Re: post-ccsvi
johnjoe wrote:hi, i got liberated on the 9th of june. op went well and doc's were happy, but since i got home my right shoulder up to me neck has been very sore and hard to straighten out, (this is my good side and i dont wana see it go...). I rang tokuda and one of dr. drodinski's doc's siad that it have been damaged in op???? anyone else have this problem?? i went for a massage yesterday, she told me that it definitely wasnt the muscle that was hurting and looks like it damaged somehow????
Anyway, i go back to tokuda to get it checked next wednesday!!!!
So anyone else had this problem and had to go back???????
john
Hi John,
I want to let you know I had extreme pain in the neck and shoulder that I couldn't even turn my head to the the left side were I was hurting. I also couldn't roll my head around (like when warming up to exercise) another thing I couldn't do is sleep on that side of my head as it didn't turn that far and hurted too much. It did go away but it took me over two weeks no more than 3 weeks for the pain to go away.. Rest assure it will cure itself.. I do believe it has to do with the procedure of the ballooning. I did see somebody who had bruises from the balloning so maybe it's a bruise inside that we can't see. I thought I would have to go to the doctors to get it fixed but all worked out without having to go.
Good luck,
Donna
Re: post-ccsvi
devine wrote:thabks for that donna!!johnjoe wrote:hi, i got liberated on the 9th of june. op went well and doc's were happy, but since i got home my right shoulder up to me neck has been very sore and hard to straighten out, (this is my good side and i dont wana see it go...). I rang tokuda and one of dr. drodinski's doc's siad that it have been damaged in op???? anyone else have this problem?? i went for a massage yesterday, she told me that it definitely wasnt the muscle that was hurting and looks like it damaged somehow????
Anyway, i go back to tokuda to get it checked next wednesday!!!!
So anyone else had this problem and had to go back???????
john
what type of MS do you have? did you get the procedure done in bulgaria? and how are you after it?
john
Hi John,
I want to let you know I had extreme pain in the neck and shoulder that I couldn't even turn my head to the the left side were I was hurting. I also couldn't roll my head around (like when warming up to exercise) another thing I couldn't do is sleep on that side of my head as it didn't turn that far and hurted too much. It did go away but it took me over two weeks no more than 3 weeks for the pain to go away.. Rest assure it will cure itself.. I do believe it has to do with the procedure of the ballooning. I did see somebody who had bruises from the balloning so maybe it's a bruise inside that we can't see. I thought I would have to go to the doctors to get it fixed but all worked out without having to go.
Good luck,
Donna
Re: post-ccsvi
john[/quote]
thabks for that donna!!
what type of MS do you have? did you get the procedure done in bulgaria? and how are you after it?
Hi John,
I have Remittance ms. My procedure was done in Bulgaria on June 1st. Just a couple of days before yours. My blockage was critical more than 90% on the left side (that is the side that I was in pain like you) I think, if I understood correctly they had tried 3 different sizes of ballooning and was only able to unblock it 50%. They did tell me they needed to stent in two places on that side but I chicken out since I don't know much about the stenting and with two young children didn't want to take any risks without no knowledge of the outcome. Still trying to ask the people who have gotten the stenting done for some updates on the stents they used or if any pain and what to watch out for if we can get mri's done still but unfortunalty no success of any answers... My success has been great as per cold feet disappear, the pain in my ear gone. A feeling of something in my throat also gone, alot more energy. The brain fog has gone but these last couple of days i'm starting to feel some of my symptoms coming back. I've currently sent an e-mail asking to be seen this coming Sept or October where if there is any changes and re-blockage once again I will have to get the stents placed. you have to let me know the outcome of your shoulder, neck pain if it gets any better.
take care,
Donna
thabks for that donna!!
what type of MS do you have? did you get the procedure done in bulgaria? and how are you after it?
Hi John,
I have Remittance ms. My procedure was done in Bulgaria on June 1st. Just a couple of days before yours. My blockage was critical more than 90% on the left side (that is the side that I was in pain like you) I think, if I understood correctly they had tried 3 different sizes of ballooning and was only able to unblock it 50%. They did tell me they needed to stent in two places on that side but I chicken out since I don't know much about the stenting and with two young children didn't want to take any risks without no knowledge of the outcome. Still trying to ask the people who have gotten the stenting done for some updates on the stents they used or if any pain and what to watch out for if we can get mri's done still but unfortunalty no success of any answers... My success has been great as per cold feet disappear, the pain in my ear gone. A feeling of something in my throat also gone, alot more energy. The brain fog has gone but these last couple of days i'm starting to feel some of my symptoms coming back. I've currently sent an e-mail asking to be seen this coming Sept or October where if there is any changes and re-blockage once again I will have to get the stents placed. you have to let me know the outcome of your shoulder, neck pain if it gets any better.
take care,
Donna