Sharon's post op CCSVI

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

Sharon's post op CCSVI

Postby Sharon » Fri Jun 05, 2009 10:37 am

What an adventure!! My "bucket list" (you know the movie with Jack Nicholson and Morgan Freeman), did not have this adventure listed on it, but it does have "fight the MS with everything positive". Even though I feel pretty crappy right now, I think I can put a check mark alongside that entry.

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.

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.

POST OP RECOVERY Again, let me suggest that you ask for something to eat - it may or may not help with the nausea - you will know within a few minutes. Ask for the pain medication - don't be a hero and try to tough it out. Be honest with the nurses when you are rating your pain - BE IN CONTROL.


OBSERVATIONS BY DR. DAKE I did not have the immediate relief that Jeff had because my symptoms did not present the same as Jeff's. I did not suffer from fatigue, nor the brain fog. My cognitive symptoms would be related to not being able to "find a word" - --- having difficulty in organizing my thoughts - not finishing a sentence. I think I need to get off the Percocet before I start trying to see if any of that has changed (I am kind of loopy right now). Marie had the immediate relief with her internal thermostat. I have a problem with cold air - during the winter, if my left leg got cold it would stiffen up on me. Well, obviously I haven't been able to test that out because we are now into the warm weather. Dr. Dake does not know what is reversible - he is as curious as we are.

AT HOME RECOVERY So, far so good. I will see my GP on Monday for a follow-up blood test. Marie's tip of getting your GP onboard before leaving for the surgery was excellent. Dr. Dake has contacted her directly. My medications right now are the Percocet for pain, Plavix twice a day, Coumadin once a day, and a baby aspirin per day. I am to continue taking my Actonel for osteoporsis - Dake took me off the LDN until I see him in August. He really wants to see how I do without any MS medication. I am okay with the decision.

How do I feel three days from the procedure? I still have pain in my throat when I swallow - I did not have the headache that Jeff experienced. The pain when I swallow is sort of like strep throat, but worse. The Percocet helps the pain but it also keeps me tired. I needed to lay down and take a nap yesterday (this is unsual for me). I am spacing the Percocet further out, so things are getting better. Like Jeff and Marie, I need to be careful with turning my neck - the neck, head, and shoulders need to turn together. I was concerned about my golf - Dake said not to worry - I would be good to go in about 10-14 days. I will be able to tell by the tenderness in my neck.

Now about any physical changes - again, this is hard to tell because of the Percocet. The tightness in my left calf muscle is gone - WHY? I have not been wearing my WalkAide since the surgery and I realy have not been walking that much ---so, maybe it is because I have not been active. We should know next week. My left leg does not feel heavy - again is this because of less activity? I do not know, but it should be answered next week. I did notice that when I took my shower yesterday morning it seemed to be easier to lift my left foot up to place it on the shower bench.

I am going to take a break for now - I guess this is Chapter One.

Take care all,
Sharon
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Postby cheerleader » Fri Jun 05, 2009 11:47 am

Thanks for the chapter one report, Sharon...
Glad you're home and recuperating.
As I said to Jeff, if I had told you last summer that you'd be getting stents at Stanford and it would relieve your fatigue...he'd never believe it. Life is very strange and quite unpredictable.
I was concerned for your golf game, too. But it seems that once the stents settle into place, you'll be good to go again.
The sore throat is interesting. It's sore inside the throat like strep? Are you sure you don't have a viral thing? Maybe have the doc do a swab on Monday if it doesn't get better.
Jeff's tightness in his legs is also a bit better. It's not every day anymore, more random.
keep us posted, Sharon-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Fri Jun 05, 2009 12:26 pm

it sure was great to have another ms'r at stanford where we can communicate and go thru things almost at the same time. Thanks sharon!
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Postby mrhodes40 » Fri Jun 05, 2009 3:23 pm

Great job fighting this with all you have Sharon, we have done our best to get at it. What a sonderful compilation of information. people will surely benefit from this!

My throat is sore too I understand exactly what you refer to there. My ear hurts also. it is much better though now than tit was for me, your stents is so much longer than mine it may be different. I am curious is your arm on the operated side weaker than the other? both of mine are a little weak the sore neck lays in there i think, I can't reach the cupboard above the stove overhead fan.
:?:
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 » Sat Jun 06, 2009 8:32 am

Marie -
Great job fighting this with all you have Sharon, we have done our best to get at it.


You and Cheer have been the trainers in the corner of the ring - you have done the dirty work with all your research, and your explanations.

My throat is better today. I do not have any problems with the ears. The left arm does seem to be a little weak :?: Hmm! I noticed the arm this morning when I was blow drying my hair.
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Postby CureOrBust » Sun Jun 07, 2009 5:53 am

Best wishes Sharon. :)

I wouldn't be too concerned with your arm weakness so soon after your surgery. I would guess (in my non medical...talk to your Dr's of course) that its just your body avoiding any movement of muscles close to the stents.
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Postby Sharon » Mon Jun 08, 2009 10:14 am

Six days out from surgery -

Saturday night was my last Percocet (thank goodness). I am now down to Tylenol once in awhile. Now that I have been off the Percocet for more than 24 hours, I think I can start to report any changes.

I have a fullness feeling on the left side of my face. My simple explanation is: my large blockage was right at the area where the facial vein takes off from the jugular vein. The facial vein also has two subsidiary veins that take off from it and they go below the upper gums and the lower gums. Now that the jugular is opened, I am guessing that I have blood flowing correctly through the secondary veins. My understanding is that you have nerves which go alongside most veins - so the nerves are probably getting a little excitement now that I have a different flow of blood.

What I find interesting is the pain which I had a couple of days ago in my left face was the same as the pain I had when I thought I was having a migraine headache.

When I brush my teeth, I get this wierd "ice cream freeze" above my left eye. This must be the veins along the gums sending a sensation to the vein which goes to my left eye. I also get the "ice cream freeze" if I have my head leaning to the right for a few seconds. The good news is -- it is getting so-o- much better!!

I have had a pain in my lower right back for about six months - it is gone--but, this could be because I am not doing my Pilates or strength training, or playing golf.

The left calf tightness has decreased. My walking has not changed. My shoulders are a little tight but that is probably because of less movement. We have to move our neck and shoulders together.

I have an appointment with my GP this afternoon for follow-up.

That's about it for now.
Sharon
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Postby Loobie » Mon Jun 08, 2009 10:27 am

Thanks Sharon! I'm just lying in the weeds waiting my turn and love it when someone posts a post op update.
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Postby Sharon » Wed Jun 10, 2009 8:10 pm

Today I went to my wonderful massage therapist - she use to be a physical therapist at Spalding Rehab here in Denver - I consider her to be a major player in my MS treatment plan. I told her my shoulder was tight --thought it might be because I was having to move my neck and shoulders together. So she starts feeling around and says "nope" it is the levator muscle. The muscle goes up along the jugular. She said because of the inflammation in the area the muscle had tightened and we just needed to get it stretched out a bit. Within five minutes, my shoulder was feeling just fine. She warned me though, it was going to tighten up again because I still had inflammation. This is what she suggested that I do (I AM TELLING YOU THIS SO YOU CAN DO IT IF YOU HAVE JUGULAR ISSUES). :) Stand up, think of lengthening your spine (reach your head toward the ceiling), tighten your core muscles, and then circle your shoulders from back to front. Purpose is to contract the opposing muscles of the levator which will help to release and lengthen the levator muscle. Hope this might help someone in the future.
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Postby mrhodes40 » Wed Jun 10, 2009 8:43 pm

Great tip Sharon I'll try it!

PS no deep massages anyone while on coumadin... just gentle ones. I love my massage therapist! better than PT usually for me and cheaper too
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 cheerleader » Thu Jun 11, 2009 7:05 am

Thanks, Sharon!!! Just sent your shoulder tip down to Jeff in the studio. He made a similar comment that stretching out/lengthening his arms by carrying our son's trumpet case made the shoulder feel better. Maybe light weights in the hand (soup cans/dumb bells) to lengthen the muscles.
I think we'll need to write up the post op recovery guide once you and Marie are both on the mend!
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Thu Jun 11, 2009 7:19 am

Cheer - glad that you said something about Jeff lengthening his arms - I forgot to mention that. You need to feel like you are stretching yourself out from the shoulders up and the shoulders down. So, imagine reaching up through the top of the head and then with arms down to the sides, imagine reaching fingers to the floor. Tighten the core muscles and start rolling the shoulder back to front (not front to back)

Marie - yes, I had a gentle massage - she was also trying to stretch some of my tight places like my hip flexors.

Sharon
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Thank you Thank you

Postby Islandgirl » Fri Jun 12, 2009 10:07 am

Reading your experience really made me feel calm and gain confidence in Dr Dake and the surgery. I'm so happy you are feeling changes for the good even though they are small. Thank you Islandgirl
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Postby Sharon » Fri Jun 12, 2009 10:41 am

You are welcome Islandgirl! You will have your own story to tell and we hope that you will share it with us.

Sharon
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Postby Sharon » Tue Jun 16, 2009 1:38 pm

Two weeks out from surgery

I did not expect it to take this long to be fully recovered, but looking back on everything, I am happy with where I am. The soreness in my throat when I swallow is completely gone. I still have minor intermittent pain alongside my nose and above my left eye. The nerves along the facial vein and the facial vein itself are getting use to having blood flowing again. The back pain which I spoke about previosly has not returned - I still do not know what to think about this. Tomorrow I am going to a Pilates session - maybe it will flare then. I started back to my exercise training program on Friday and the back pain did not flare. I have not played golf yet, so I am still kind of waiting for the pain to reappear. I never associated the back pain with MS.

The big issue is the shoulder - oh, my gosh is it tight. Jeff and Marie have had the same problem (Holly, how about you?) I can almost feel the muscle tightening - some days I think my shoulder is going to be right under my ear. The tightness is due in part to the levator muscle which goes alongside the jugular, It is contracting because of the inflammation where the stent was placed. Marie and I have thought we should mention this to Dr. Dake. Maybe a muscle relaxant would help. I have had a couple of massages which release the tension for a couple of hours, but then it starts tightening again. I started using a back massager on Sunday - I think it is helping.

I do not know why, but for some reason when I have my WalkAide strapped on, my gait is smoother. I can bend and lift my leg up just a bit higher. Nothing drastic here, just little, itty, bitty changes.

Each day seems to offer a little something different. This morning I woke up and had a dull sensation at the back and the bottom of my skull -
didn't hurt - it was just there---it is gone this afternoon. Each day is better than the next, except when the shoulder starts "screaching". This too shall pass.

Sharon
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