Sharon at Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby mrhodes40 » Tue Jun 02, 2009 10:56 am

Way to go Sharon!
It is still amazing to me too sitting here with bilateral stents myself. This is wonderful..............

Since all of us have it then we have to believe that it is at least pathognomic...

Sharon thank you for volunteering to be part of this effort to investigate this! It is no small thing to go forward into a new idea and be a guinea pig. It is a great contribution. Every patient enlightens new knowledge for us all..........

Good job rest and heal up well...!!

Thank you
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Tue Jun 02, 2009 8:28 pm

Hello everyone! This is Carrie, Sharon's daughter. I am posting for, Mom, because she just got done with the procedure. She is doing great! The doctor found that her jugular vein was blocked. He fixed it with a stint. Other than a small headache, she is doing great! She will check out of the hospital tomorrow morning and we are on our way home tomorrow night. I am sure she will post sometime on Wed. She is lucky to have a spot with so much support.
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Postby Loobie » Wed Jun 03, 2009 3:47 am

Thanks Carrie,

Give your Mom a big hug and kiss from all of us here.
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Postby Needled » Wed Jun 03, 2009 6:51 am

Hi Carrie, Thanks for letting us know how she is. I'm so glad it went well. What a relief. I can't wait to her the particulars from her. Have a good trip home!
N
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Postby notasperfectasyou » Wed Jun 03, 2009 7:02 am

Hi Carrie, Thank you for being here to share with us. We are all very supportive of each other and it's great to know that you are there. Incidentally, she only had one blockage? Ken
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Postby cheerleader » Wed Jun 03, 2009 8:13 am

Thanks for taking such good care of your mom, Carrie. We're all relieved to hear she is doing well after her procedure, and that you're there to get her home, set up and healing. Tell her to take it easy, take the pain meds if she needs them, and that we look forward to hearing from her.
all the best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Wed Jun 03, 2009 10:59 am

Yes, Carrie, thanks for the update and please give our best to your Mom. Glad to hear that is going home.
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Postby Sharon » Wed Jun 03, 2009 1:41 pm

Out of the hospital and packing things up to take the flight home. Just a short summary, because I get an "ice cream freeze" if I hold my head looking down for very long.

My blockage was in the left jugular - it was like Marie's where the vein was flattened out---but, unlike Marie's, the area flattened was a little over three inches long. So, the good doctor needed to put in two stents. Dr. Dake checked out the asygous vein twice and could not find anything. He is quite confident my only blockage was in the jugular. I will post about my experience when I get home. I will say that I have not shown any of the immediate relief from symptoms like Marie and Jeff. Dr. Dake has some ideas about why- I will discuss later.

I spoke with Holly this morning - Dr.Dake was able to get her insurance mess figured out and she was going in for surgery late this morning. She asked that I let everyone know.

Thanks again for your support.
Sharon
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Postby notasperfectasyou » Wed Jun 03, 2009 6:49 pm

Sharon, it's great to see you back and online. I am amazed with how quickly you Marie and Jeff have worked through this. I am thankful to everyone for sharing this journey. I can't wait to read more of your thoughts about your trip and recovery. Ken
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Postby whyRwehere » Wed Jun 03, 2009 10:12 pm

Thank you Sharon for updating us and letting us know you are well. I am looking forward to your next email......I hope you will feel better then!
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Postby mrhodes40 » Thu Jun 04, 2009 6:47 am

Wow Sharon, I wish you well. 3 inches of stent! I can't imagine that. It takes time my neck is still a good day and a bad day. Remember I stayed in the hotel till thursday sleeping also and we left for the drive home Friday. I would not have been able to travel day 2, I felt pretty darned awful. I marveled that Jeff had flown on Wednesday. I will be interested in your feedback as to how the trip is after surgery in your case for the general purpose of knowing.

Stents are usually a smaller thing, the high jugular neck stents are not comfortable...mine did not feel like "ice cream freeze" but my neck is still sore a lot of the time. I am still getting more and mroe comfortable every day though. 2 weeks out for me.

Jeff and I both use kitchen towels heated in the microwave tossed on or necks like Rocky...........not near the stent area at all--that would not be good-- it relaxes the trapezius and makes it not so trigger happy in the back of the neck area. It will get better every day and feel more and more comforatble. Thanks for the update!
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Thu Jun 04, 2009 9:53 am

Good Morning to All!

Home again - it does feel good to be home again. I was discharged from the hospital yesterday morning - went back to the hotel and rested in the afternoon and then took a flight home to Denver. I did not get home until midnight, --so it was a LONG day.

Here are a few of my first thoughts for those who will be travelling to Stanford:

Plan on spending a night in the hospital. My orignal plans were to travel back home the day of the surgery - I am telling you - I would have been a disaster - do not try it. Staying in the hospital is just a good decision - the nurses will moniter you on a regulary scheduled basis. I received an IV for hydration and antibiotics (as a precaution - I did not have an infection) - I also had an IV for Heparin. Dr. Dake wanted to jump start the blood thinning process with the Heparin - I guess it takes three days for Coumadin to become effective. Also, the nurses can moniter your little incision in the groin area to make sure that it is not bleeding. Mine was "leaking" according to the nurse - in my opinion it was bleeding so I needed to be calmed down a bit. The nurses will moniter your pain and will be able to adjust the medication as needed - YOU WILL HAVE SOME PAIN! I might also suggest to stay an extra day at your hotel like Marie did.

Upon arriving at Stanford, familiarize yourself with the layout of the hospital. My tests were not confined to the hospital - I had to go to Blake Wilbur clinic for the MRI/MRV. Be sure to check out the parking situation. We found it was worth the $8 a day for valet parking. I did take note of the handicap parking - I think the HC parking is closer at the Emergency Room entrance than it is at the Main Entrance. Also, Dr. Dakes office is closer to the Emergency Room entrance. I will find my Stanford hospital map and get it posted on TIMS for you to see.

I was in the "tube" for a long time - at one point they pulled me out and told me to stretch for a minute and then I would finish up in about a half hour. They asked how I was doing? My mistake---- I said "FINE" --the technician then told me that I could have been out sooner, but I was doing such a good job that all the doctors wanted more and more images. Remember this is a research hospital, so I guess they think more data is a good thing. Like Marie mentioned, there will be other doctors and students who are "looking in" on you. So, if you have a problem in the tube, be proactive and tell the technician at the beginning. 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.

Start a journal and write everything down that you think might be a symptom of MS - then write down anything that bothers you, but do not attribute to MS. Dr. Dake is making a very large spreadsheet with this information for all his patients. He is looking for correlations, improvements in symptoms, etc.

Towards the end of the procedure, the OR nurse will give you some drugs. Marie and Jeff noted that they had nausea and Dr. Dake had confirmed it. He could not figure out why the procedure would cause nausea - so he warned me. Well, I did not have nausea - why? Maybe because when I got to the recovery room I asked for graham crackers. I had not eaten anything since the evening before and I knew that I would probably have an upset stomach with the drugs the OR nurse gave to me. It hurt to swallow and eat the crackers but I was more concerned about the nausea. So, that evening when Dr. Dake came in to see me - he asked "how is the nausea" - I told him that I did not have any. His next statement was, " what did you do differently?". I said I didn't know except that I ate graham crackers 'cause I knew the pills would make me sick. He kind of laughed and said "that's too simple". So, now the question to Marie and Jeff -----did you eat any graham crackers after the procedure?

This is getting way too long of a post, and the Percocet is doing its job. Please excuse any mistypes -

Later,
Sharon
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Postby Loobie » Thu Jun 04, 2009 10:18 am

Thanks for this Sharon. Any advice on how to "do this thing" is much appreciated. Here's me hoping you feel better soon!! I am staying at a friend's house and I actually plan on staying in the area for five days. Hopefully I won't need it all, but just in case.
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Postby cheerleader » Thu Jun 04, 2009 10:43 am

Thank you so much for your observations, Sharon. You have done everyone such a huge service and I want you to know how much it is appreciated. I hope your healing at home goes smoothly, and that you can deal with the head and neck pain.

I think the double jug procedure creates nausea because of the extreme change in cerebrospinal fluid, kind of like a lumbar puncture nausea. You had a bit of drainage on your right side, so your brain fluid levels may not have changed as drastically as Jeff and Marie's. (Jeff actually had bad waves of nausea as the stents were being placed and it lasted several days). Just a guess, unless it is the magical graham crackers :) Jeff didn't have any!

I hope and pray Holly's procedure went well...as a double jug, she will not be feeling well for awhile. I'd love to hear Dr. Dake's observations about your case in more depth...as to why no blockage in your spine and how that might relate to spinal lesions. If and when you care to share, we'll be all ears (and eyes!)

Thank you again, Sharon. Picturing you on the golf course, birdying real soon!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Thu Jun 04, 2009 11:53 am

Sharon, so good to hear that you are back home and doing well. What an incredible experience. And I can't thank you enough for posting such specific recommendations and comments about your experience. I am taking notes so that I can be well prepared when I go next month.
Please take care. Looking forward to your next post. - Randi
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