Neck Feedback desired

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

Neck Feedback desired

Postby Loobie » Thu Jul 30, 2009 5:09 am

OK,

Since I had felt a little better and then promptly overdid it, I want some feedback from the others who have gotten through all of the surgery after stuff. I have a little different type of 'feeling' in it now and wanted to check it out with you all. I can turn my head fully now and it doesn't hurt at all. I've been driving and everything. Well it now feels very focused on the stent area and it causes a little discomfort when I swallow when not looking dead straight ahead. I think this is probably normal; i.e., overall swelling going down so it is focused just on the acute area of the surgery.

Does that make sense?, and did anyone else have this type of more focused discomfort as you started getting range of motion back?
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Postby mrhodes40 » Thu Jul 30, 2009 6:15 am

In a word yes. I can still make my stents sore with a too hard turn.
It usually happens when someone sneaks up behind me and kisses my ear I automatically try to turn my head like an owl and kiss back :oops:

The first time I did something like that I hurt for another day or two.

Now it is brief, like an hour of noticing it
Remember the stents are irritating the lining of the vessel and it is laying down new endotheluym to cover that stent. He hopes that job is done at 2 months, so it makes sense you'd feel it

I am at 2 months and 2 weeks and I have almost no pain at all now. I can sleep on either shoulder (Finally!)
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 Jul 30, 2009 6:47 am

Lew...just read your post to Jeff, he says, "sounds completely normal, Lew." He said his pain activator was looking up or down at his computer monitors (he has 2 on top of each other), but the pain was localized to the stent area only.
Marie, so glad you're FINALLY pain free. whew...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Fri Jul 31, 2009 7:34 pm

Lew -

I am two months out on the surgery - the past couple of weeks I have noticed a new "sensation" (not really a pain). Behind my ear on the boney part, I have this mild feeling - actually, if I press on the bone it kind of feels like it is the bone itself. I am still having issues with neck pain - 80% better - during the day if I keep movement in my neck area it is fine. But, if I am driving, or sitting for any length of time, I get the pain which radiates to my collar bone. Once I rotate my neck a few times it will go away..... I must still be having some muscle spasms.

I will see Dake on August 5th for my follow-up, so this is something that we plan on discussing in further detail. I may have aggravated some of the neck issues by getting back to my regular physical routine. My physical therapist has assured me that things will get better -- she said she would rather deal with my muscle spasms then with my mental outlook which she thought would go negative if I did not get back to my regular activities!

Sharon
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Postby Loobie » Sat Aug 01, 2009 5:21 am

Sharon,

I could have described that "bone thing" behind your ear. That is EXACTLY what I am also feeling. This morning I have it on the side he didn't operate on!, but I think it's because I slept funny. No reason for that side to hurt. I'm kicking myself for overdoing it as I feel I may have already been almost pain free, but then I think about it and it probably had just lessened so much that I ignored it; ie it was probably still there about like it feels now. I still get that really focused headache where it feels like someone pushing a rod from you neck to the top of your skull on the stent side, but that sounds normal too. I am taking a perc. at bedtime, along with some MJ, which is the only way I can tolerate it, and it's helping my sleeping a whole bunch. Tonight I'll try it with nothing as I've been using one of those every night since the night after "the tiller incident" :lol: .

I'll tell you guys, I feel back to baseline MS and that's about it. I don't feel as good as I did that day I tilled, but rather I just feel like my old MS'y self with some head and neck pain thrown in. I hope this abates; I'm ready for my check up. If this lasts a few more days I'll be able to say that it officially has only given me one day of relieved symptoms. My spasticiy and everything is back (really bad after sitting for 15 minutes or so and then getting up; legs jerking before I can take a step). I just hope I get out there and find out it was a clotting issue, or my left side that we didn't do or something. This has been a rollercoaster so far. But hearing about others is keeping me hopeful. Mr Impatient is still waiting, but I have given in to the fact that it may take longer in my case. I just had hoped for a little relief in something to keep me upbeat; just a little is all it would take! I'm even leaning into the wall doing stairs again. Oh well, let's just hope I am indeed a 'teaching moment' for Dr. Dake.
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Postby LR1234 » Sat Aug 01, 2009 6:12 am

Thanks for your honest post Lew. Its helpful to know the positives and negatives from those who have had the op because as you know it is a massive decision to have this treatment...before we undertake it we need to hear both sides.

I really do hope things improve for you and that the pain from the op subsides and you get relief from your MS symptoms.
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Postby Sharon » Sat Aug 01, 2009 7:25 am

Gee, Lew - tilling the garden two weeks after the surgery??!! I am impressed, but have to agree with you that it was probably a dumb thing to do. Remember those stents needed time to get "seeded" into the jugulars. I wonder if you might have disrupted or moved the stents--sure hope not!

Even though I am back to playing golf, exercising and Pilates, I still am careful as to movement. The left side arm and shoulder area are still tight which has weakened my strength, so I try to take it easy - i.e. less weights when doing chest press, and I have modified some of the Pilates poses to accomodate the weaker neck and shoulder muscles. I am trying to be patient (as you are Lew). I have to remind myself that this was surgery---it takes time to recover from surgery. For example, last October I had surgery on my right ring finger for a "trigger finger release". The doctor told me it would take a couple of months before it was healed -- yea, right ---more like four months....and, this was just a simple little procedure.

I enjoyed reading your blog -- your last entry was a few days before the above TIMS post - sounded like you were a little more positive than you are today. Hopefully, a nice relaxing weekend will be what your body needs to recover a bit. Last week while on vacation, I thought I could keep up with my daughters and their husbands (ages 38 and 40) and play 18 holes of golf everyday----WRONG! I realized that I should be ecstatic to play 9 holes of golf everyday -- I count my blessings.

The sensation thing behind the ear---Lew, maybe I will have an answer for us next week after I meet with Dake.

Have a nice weekend.
Sharon
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Postby mrhodes40 » Sat Aug 01, 2009 7:56 am

Lew, what a bummer to feel like everything went back to baseline. :evil:

I agree with Sharon's assessment though. It may be too soon to call it good or not as surgery lays you low, and you also had horrendous reactions that added to all that.

I feel pretty unchanged walking wise though I still do not need the baclofen and requip at all at night. I still look and feel more awake and energetic, but for me this is limited by my crappy walking, as in I am not walking the mall to shop or anything so I am not living differently... I'll fall if I try to walk too far. Once off the coumadin I'll work at it more.

I think more will be learned as time goes on. At the minimum we need follow up visits to see what is what.

It may be that restenosis of jug stents is common (gees I hope not!)...pioneers find out in process I'm afraid :roll:
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 mrhodes40 » Sat Aug 01, 2009 8:05 am

I said
that restenosis of jug stents is common

I should complete that thought and say "and revision is necessary" ie ballon repairs or whatever............
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 Loobie » Sat Aug 01, 2009 8:33 am

Thanks guys, and you're right, more time is needed, so I'm going to be laying low for a while. Going back to work Monday is going to be telling. That's the most "routine based" thing I have to compare to. Also since I had that one really positive day, my hope is not lost or anything. I simply have the patience of a 3 year old. You should see me in a traffic jam. I'll drive 100 miles out of the way to keep from sitting in traffic. It's a real problem with me; a personality defect if you will.

Speaking with Dr. Dake yesterday via email, he doesn't really think there's a chance that I dislodged my stents. He was more worried about proper hydration when, and I quote myself, "I was sweating like a whore in church". But I always stay hydrated for my bowel issues and I had a glass of ice water directly after doing that. So I'm not really worried about dislodging them. Ok, here is his response verbatim (cut and paste style :) ).

"In terms of your major physical activity, I don-t worry so much about stent damage or possible displacement, but I am very concerned about dehydration. You need to insure that you are constantly re-hydrating when you are perspiring excessively. Any decrease in intravascular volume (and sweating has a profound influence if not adequately replenished) could provoke a situation where clotting is more likely to occur. We see this all the time with DVT in the lower limbs. Any vomitting or heavy sweating is a set-up for clot formation as the blood elements are more concentrated with less blood volume. Don't mean to scare you---just want you to be on guard and take precautions."

So it doesn't sound like you can move them around, just maybe inhibit the flow through dehydration. I'll get through this and if I feel this way until my check up, well then we'll address it then. I really am fine. I'm just a driver type personality with a rare driver backup personality. I'm serious. When studying personality types during some continuing education in sales, we learned about people's four basic personality types and their backup type when type 1 doesn't work. You have Drivers, Intellectualls, Expressives, and Amiables. There isn't a "better" type or anything, and they're all pretty equally distributed across people. But usually drivers will have an expressive of intellectual back up, which simply means that they resort to convincing or persuading to get what they want versus being a driver. Well I'm a Driver/driver. I'll listen to someone expressive tell a story and they will be like "and it was a beautiful day and the sun was shining..", and I'll be like "will you get to the point!". Usually not literally, but I really do wish I were more patient. I think that's why I 'tested' myself a week out. I mean it wasn't a conscious "I'm going to test to see my limits", but I know somewhere in the back of my mind that's what was going on. I mean even today I was thinking about mowing my back hill in my yard. It's a small section, but it's steep as hell. Even considering that begs the question "do I need slapped?". But I won't act on it. I need to take a giant chill pill, and see what shakes out. I'm just so used to forcing the issue and not waiting to see what shakes out.

So the personality traits that have served me so well professionally are not exactly the best tools in my 'toolkit' for dealing with post surgery conditions. I'm really not an asshole :lol: , but I've been known to behave like one professionally and sometimes I just need to shut that part of me off. 'Demanding' (symbolically) is not going to make this work. Proper care and feeding will and I need to make sure that's what I'm doing. Thanks guys once again for listening to me explaiin my neuroses. I'm really a likable person, I'm just put together cheap :lol: .
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Postby cheerleader » Sat Aug 01, 2009 8:51 am

Oh, Lew. From one "driver" to another, I'm really sorry. I know you're looking at going back to work on Monday, and facing people who all want to know if "you're cured!" now...and all of that plus flying across the country and having this surgery, recovery and maybe facing more. Well, that's alot. And I'm sorry...that you didn't have more relief, that this has been tough on you on many levels. But don't think this is over...

Dr. D is a perfectionist, and he's going to help you thru...we're all here for you. One thing I can tell you...I don't think you're going to have a relapse like that doozy you had in June. That was the beauty of reading Zamboni's Charing Cross paper...if we can keep the venous drainage going, we can knock this sucker back, and hopefully stop progression. Then it's on to healing.
You and your fam are in our hearts and prayers. Thanks for being you, Lew...
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sat Aug 01, 2009 4:32 pm

That was the beauty of reading Zamboni's Charing Cross paper..


word. I cling to that thought myself....
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 Loobie » Sat Aug 01, 2009 4:54 pm

My thoughts Ed Zachary.
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Postby Jamie » Sat Aug 01, 2009 6:30 pm

Lew, its not been long mate.
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Postby Loobie » Sun Aug 02, 2009 5:35 am

I feel like Veruca Salt.
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