Questions for those who have the surgery

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

Questions for those who have the surgery

Postby guitarguy » Fri Jun 26, 2009 9:38 am

Did you need a referral from your neuro?
Who follows up with you when you come home?
How soon can you fly after the proceudre and how long do you need to stay near stanford?
I read they keep you awake duing the surgery, that is a little creepy but then again I really prefer that vs being put under. So they at least give you some sort of sedation to relax you or are you just numb?
Do we just call Dr. Dake to set this up or can we have the MRV in our home state first and send him the results?

Sorry for asking so many questions, I have been reading as much as I can but I dont think I am retaining a lot. lol
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Postby peekaboo » Fri Jun 26, 2009 1:48 pm

I got my referral from my GP/PCP the day before surgery

My GP is responsible for blood thinner management while Dr. D would like to be informed on any changes...he is very accessible Dr D aslo want me to go back for a follow up MRV

I flew the next day...others waited another day due to the need for additional recovery time

No big deal staying awake..hardly feel a thing and it is interesting to hear the op going on...yes sedation is given

You can set up your own MRV where ever . Dr D will consult. Just make sure the MRV people know what they are looking for.

Hope this helps
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Postby Sharon » Fri Jun 26, 2009 1:54 pm

Answers to your questions:

1. The referral is dependent on the type of insurance you have. HMO plan, you will need referral; PPO plan - no. You do not need a referral for Dr. Dake to see - he does not require it------your insurance might.

2. You need someone to follow you up because of the blood tests required for regulation of the blood thinners dosage. If you have a GP they can do the testing. Dr. Dake will personally contact your follow-up doctor.

3. I believe that Dr. Dake is now having everyone spend one night in the hospital - release the following morning. I flew home the afternoon of the release, Holly flew home the morning of the release.

4. It is called conscious sedation - yes, you are awake so that you can take instructions from Dake - he will ask you to inhale and hold your breath during the procedure. You may feel some pain when the stents are pressurized.

5. Take your chances with having the MRV in your home state. As we have repeated on this forum many times, technicians are not familiar with looking for blocked jugulars. Dake and his staff know what they are looking for. There are some on the forum who have sent their scans to Dake to read. I seriously doubt that Dake would do a procedure using someone's scans --he is very detailed.

Look at the following topics for information about Stanford and Dake
http://www.thisisms.com/ftopict-7387.html - Getting Ready for Stanford
http://www.thisisms.com/ftopict-7299.html - Marie's log
http://www.thisisms.com/ftopic-7382-0.html - Sharon' log
http://www.thisisms.com/ftopic-7274-0.html - Jeff's log
http://www.thisisms.com/ftopic-7359-day ... sc-15.html - Holly's log

Hope this helps
Sharon
Last edited by Sharon on Fri Jun 26, 2009 5:36 pm, edited 1 time in total.
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Postby mrhodes40 » Fri Jun 26, 2009 3:55 pm

Good answers I concur... :lol:
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 guitarguy » Sat Jun 27, 2009 5:43 am

Thanks all for the info.

I am going to send my MRI to John Hopkins first, but I don't think that's something I am interested in at this time. I think I will end up trying to have this done, probably late August or Sept.
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Questions

Postby Brainteaser » Sat Jul 04, 2009 10:56 pm

Just some questions.......

1 Can the stents be removed at some future time?

2 Will the stents eventually be non-metallic? Could the answer eventually be the replacement of the collapsed section of vein, something like the replacement of a section of water pipe?

3 How does a stenteree get on through airport security?

4 When people say they have more energy, does that apply also after a meal or getting out of bed? Is energy level more constant thru the day or do people still have down-times?

5 I have intermittent 'buzzing' in my head about 2 inches NE of my left ear. Could that be venous?

6 Has the treatment assisted finger manipulation and/or numbness?

7 Does the treatment aid spasticity? Anyone on 4-AP had the treatment?

8 Heat sensitivity improvement seems a big plus but what about the adverse effects of humidity or low temperatures?

Thanks, :)
Phil
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Postby mrhodes40 » Sun Jul 05, 2009 7:08 am

Tentatively,

Stents get "endothelialized"--the "skin" of the vein grows over them and they become part of the vein. If they block up they can be restented--a stent inside a stent. After that if more is needed it is my understanding that a stent and the section of vein it has grown into can be removed in an open operation. BUT THESE ARE SURGICAL RISK QUESTIONS FOR A DOCTOR TO BE ASKED. IF YOU GET AN MRV THEN ARE CONSIDERING SURGERY THE DOCTOR IS THE PERSON TO DISCLOSE THESE THINGS!!

Considering these are permanent everyone needs to be fully informed, and as much as risks are not what we like to discuss, we need to balance that against the hopeful side. For me the decision was easy, but I feel I must stress that any forum is not the place to get your information regarding surgical risks. It may even vary for people with certain other diagnoses as well....

Jeff got through airport security no problem they are pretty small, but I have a card in my purse that says what kind of stents I have from the hospital, so if I needed to I could show that. Apparently not everyone got one of those....I got it in my discharge papers from the nurse on the floor.

I personally still feel the after food slump somewhat, and I still get tired enough to want a nap during the day, but I feel more refreshed after I rest and I have periods of time when I feel really awake and ready to go--I used to feel pretty wasted all day and never had a moment where I felt really good. These things are about half what they used to be.

fingers, eyes, legs, l'hermittes etc-the only thing that will make a difference is HOW YOUR PERSONAL NERVES ARE. No one can answer that for an individual pre surgery, are the axons transected or is the area just demyelinated and inflammed? If it is the latter you may see improvement. This is not going to restore damaged/transected nerves
That is just not a reasonable expectation.

People will not go back to how they were before MS either unless they are very newly diagnosed. That is a hard statement but we HAVE to be realistic. My improvements are really minimal--but then I am really progressed too and ANY improvement is important to me.

Heat intolerance is better and I also am more comfortable in the cool--I used to want to KILL the other idiots in the car--didn't they see it was too cold for windows down? Didn't they realize the heat should be ON?

That is gone I can be in the car at the same temp as other people. No humidity in WA.

I have spasticity and it is better, though not gone. I have reduced my baclofen and will try lowering it more too....stay tuned. I have 4AP but rarely take it before the surgery. I will be trying it after I am off the coumadin--I'm not messing with anything now.

--hard to believe but-- Jeff was treated 2 months ago, I was treated 7 weeks ago.... A lot is still not known about how we will do longer term.

I hope that helps :D
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 » Wed Jul 08, 2009 2:04 pm

Marie wrote
People will not go back to how they were before MS either unless they are very newly diagnosed. That is a hard statement but we HAVE to be realistic. My improvements are really minimal--but then I am really progressed too and ANY improvement is important to me


My hope is no more progression - my improvements are a bonus.
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Postby gibbledygook » Wed Jul 08, 2009 2:15 pm

I agree with that. Not to progress was the aim. It was amazing to feel such clear and sudden improvements after the op, however. I wonder if slowly over the next few months we'll get even better but we won't even notice...here's hoping.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby skydog » Wed Jul 08, 2009 2:58 pm

No more progression sounds great, but setting my sights just a tad higher. Whatever it takes I will gain something back, and I truly feel that this is happening already. Less fatigue, heat tolerance better, purple foot is now pink, huge difference in my hearing and getting better by the day, my eyes are now clear, bright and able to focus without reading glasses for a much greater period of time which is great news with the amount of stuff Marie, Cheer… put out for us to read, keep it coming Please !!! Now I am ready for that Walkaid or Bioness to stay mobile since no mountain biking while on the blood thinners. Has anyone used their Walkaid or Bioness since the surgery and if so any problems with bruising because of the blood thiners ? I have a friend that who is a electronics nut and wants to build me the best waterproof, bulletproof, and fastest walkaid to date. Physical therapy is my focus after the surgery heals. I may limp the rest of my life, but if so a strong limp is what it will be. If I still end up in a chair I want one that I can use the strength left in my arms to pop a wheely. One week out of surgery and feeling great !!! Mark
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Postby Sharon » Wed Jul 08, 2009 3:20 pm

Mark - we crossed in cyberspace. You now have a topic "Mark - home from Stanford" Why don't you copy and paste the above post over there so that your recovery does not get lost on this thread?

Sounds like you are in good spirits and your recovery is moving right along. Good for You!

Sharon
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Postby mrhodes40 » Wed Jul 08, 2009 3:42 pm

yeah I'll post on it too over there
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 skydog » Wed Jul 08, 2009 3:43 pm

Great !!! Thanks Sharon consider it done M
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Postby Daisyduck » Fri Jul 10, 2009 8:31 pm

Hey Daniel: Not to fear. You will need to be at Stanford overnight. You will not be asleep completely, but you will not mind what's happening as you will be sedated. I had a great time in the O.R. thinking they were throwing me a party! They will keep you in the hospital overnight. We had to leave the following day, and my incision in the groin leaked badly so take it easy. You will probably need someone to go to Stanford with you?
I had surgery June 16, and I am doing so much better. I have had the disease for 30 years and my headaches have disappeared, I can lie in the sun again, no more cramps in the lower legs, rash gone, and who knows what else. My walking is a little better, and I am doing strength exercises for the ankles. I am not as easily fatiqued and recover again after rest.
Good luck, Daisyduck
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Postby Daisyduck » Fri Jul 10, 2009 8:34 pm

OhI forgot to say you call Dr. Dake to set this up. It is good to have a doctor at home as you will be on blood thinners awhile, and you will need to be monitored. A referral per se, no, not as such. Daisyduck
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