I thought I would "bump" this thread - Loobie and Islandgirl will be going to Stanford the first of July. I will try to gather the information from Jeff, Marie, Holly and myself to help their journey.
You will be tested with the ultrasound (Doppler) and will have an MRI/MRV in the "tube" - this will be at the same time.
I had previously posted
THE TESTS The tests are basically the same thing we have all been through before except for the breathing exercise in the "tube" (Practice your breathing - you will be asked to "breathe in, breathe out, breathe in, hold your breath". I did not have any problems (thanks to Pilates and Yoga) but evidently some people do. ) Get a good nights rest before you start out - the anxiety level builds as you go through the day - by the time you speak with Dr. Dake you will probably be "wrung out".
THE CONSULTATION Start your list of questions now - review it as time goes by. You may find some answers here on TIMS so you can cross them off - the rest you will be able to ask Dr. Dake. Dr. Dake was very gracious - he wants you to feel confident in him and the procedure and realizes the importance of that. He will spend as much time as needed. Throughout this whole process you need to take control - be proactive.
There were 2 things that convinced me almost immediately to go forward with my stent surgery later that day. Sitting in Dr. Dake's office we could so clearly see what were very damaged jugulars - the right constricted, and the left, basically a tangled mess! Here I was, starting at something so obviously broken in my anatomy - the veins draining my brian - but unlike those boatload of MS lesions in my head, we could actually DO something about this, as Dr. Dake said 'I can fix that' - wow.. something we don't often get to hear from our neurologists.
Another confidence booster for me was Dr. Dake himself. He was truly excited, compassionate, completely interested in my precise case history, and inquisitive about progress in the best possible way. And, fresh form a visit with Dr. Zamboni in London - he had a lot of conviction and confidence that this might be a key to helping us. All three of us were so surprised to see such a clear example of yet another ms case with irregular veins on our 1st try.
this is surgery, you ain't goin' to feel very good
Posted: Tue May 19, 2009 11:41 am Post subject:
Hey, it's me ..... my computer is on the fritz so if you don't hear from me that is why.
I am scheduled for surgery tomorrow at 6am.
Stunningly, I have the same problem Jeff did, severe bilateral jugular stenosis, and I will have bilat stents- or maybe one stent we'll see how it is. Dr Dake thought he'd get to see something else in me but not so. The vertebrals were acting the way they were because they were overloaded taking the jugular load. I too have a lot of collateral circulation so that shows the venous drainage seeking a new route to get back to the heart.
Because my left jugular was especially tricky to address, I was in surgery about 4 1/2 hours. I was never really 'scared' but more fascinated with how miraculous all of the technology and expertise being deployed were. Lying flat, it was hard to see anything of what was going on, but I could 'hear' it.
Pain was intense in my head when we were pressurizing the veins and then when the stents go in. One unexpected difficulty was that I had bouts of really bad nausea feelings at times in the OR. (it came and went, but was tough, although I didn't actually throw up). During my recovery week, there was stomach discomfort for about 5 days, which finally broke, along with the throbbing head pain. In discussing this a few days after surgery, Dr. Dake surmised that it might possibly a result of proximity we were to spinal fluid regulation in the head, or the pressure changes occuring and being adjusted to due to the new circulation pattern. The very minor incision (at the groin) was very tiny, and healed very quickly.
I spent the night there - I was quite exhausted and a bit dizzy from all of the IV pain killers. and slept a lot (good call)
THE PROCEDURE You will be awake during the procedure -conscious sedation. Dr. Dake will be asking you to do the breathing exercise again. I was amazed at the operating room - there were big screen control panels everywhere. I may have been in a different OR than Jeff and Marie - I was not in the one on the 2nd floor - it was busy, so they took me on a five minute ride through hallways and lobbies to another OR. I did not feel anything as far as the probe going into my groin or it going through the veins. When the stents were being placed it was a bit uncomfortable - it felt like he was tightening something -there was also a low volume noise associated with the tightening "thing". Oh, I must have started coming out of the sedation too soon - Dr. Dake told the nurse to give me some more - he assured me that everything was just fine but he knew that I was not sedated enough because I was keeping my eyes open too much. I think I was trying to concentrate on what the doctors were saying - they are just talking away, discussing what they are seeing on the big screens - making adjustments -I found this to be fascinating (even though I did not understand most of what was going on). At the end of the procedure you will be given some pills to start the blood thinning.
Marie's sister wrote
am Terry, Marie's sister, and she asked me to come post a little about what is going on. She is resting comfortably at the hospital, they are keeping her for the night. She had duel stents put in, and the pressure in the blood vessel (on the brain-side) went from 13 in one vein and 5 in the other to 2 and 1 after the stents were put in (don't ask me the scale, cuz I am not sure). She has a headache, and is nauseous, but is crunching her dinner in my ear as I write, so I think she is going to be okay!... it has been a loooong day!
Second of all this is real surgery. NO kidding.
Third of all Dr Dake stresses that we have no way of knowing if this *will*
help MS. However I did ask him if it were his MRV showing that blockage would he do it, and he said yes absolutely. But he wants to make sure there are no false promises implied. Jeff's recent post very clearly made that case...
Back home, there we a few days of panic - where it was like, 'what the hell have we done here'?? - anybody with ms knows a 'new' pain always brings a bit of panic - like, 'oh no, a new symptom I'll have to manage from now on. So now my head feels like it's going to explode, and my stomach aches, great!
. I would plan on staying at least an extra day - maybe not in the hospital, but at least in the area. If you are flying and need to change your plane reservations, Angela will write a letter to the airlines. I was flying Southwest - we changed our flight to the next day - handed the letter to the Southwest clerks - no problem, no extra charges.
I know this is a long post, but I think there is useful information. Hope it helps!
Holly, Jeff and Marie - please add anything else you can think of.