Gibbledygook's Stents

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

Postby mrhodes40 » Thu Jun 25, 2009 4:46 pm

IT is so great to hear from you Alex! I am glad that you got the treatment, and so glad you can relax in lovely northern CA. Hope you get a good connection and we hear a lot from you.

But Alex be moderate in the wine country for the sake of your coumadin
http://www.medscape.com/viewarticle/500855_3

not too much wine tasting up there. Percocet is my best choice for pain management also. I used a lot of it for my broken arm/shoulder... and relied on it for this as well

I think in the UK it would be peracetamol and oxycodone as generic or, maybe roxicet or tylox as brand names would be the same thing as what we call percocet here. Percocet is tylenol and oxycodone combined.

I used baclofen for my muscle relaxant but it is inappropriate for this type of need for relaxation as it is peripheral issue and not central. Sharon what did you use for this? are you still finding you need it?

I wonder if Dr Dake needs to give everyone a muscle relaxant I sure feel I could use one BUT....

big BUT.... they make me weak and probably will others with my disability level as well. I can't take clonazepam though it is a great muscle relaxant because it has a long half life and it makes me weak for a couple of days--NOT something a person who dare not fall wants to do so I opted out of that angle of it but we may need to discuss it for others following the path behind us. My neck has sometimes hurt very badly and I have a feeling that a relaxant would have been the ticket.

Maybe a shorter acting one like robaxin (flexeril) would work has anyone with MS here used that drug and did it affect your strength and make you weak at all? just curious The neck pain doea need management and it does have a spasm-y quality.

Jeff and I both were heating up wet towels in the microwave and putting them around our necks like Rocky to relax those muscles and that helped too. I'm rambling about neck pain strategies..maybe we should have a neck pain strategy thread....?

ALex I hope you have a quick recovery it gets better every day. My first shower after surgery I noted the better heat tolerance...
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Loobie » Thu Jun 25, 2009 4:58 pm

mrhodes40 wrote: ALex I hope you have a quick recovery it gets better every day. My first shower after surgery I noted the better heat tolerance...


I hope this is the same for me. This summer is absolutely killing me.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby Sharon » Thu Jun 25, 2009 5:11 pm

Marie - you wrote
I used baclofen for my muscle relaxant but it is inappropriate for this type of need for relaxation as it is peripheral issue and not central. Sharon what did you use for this? are you still finding you need it?


My GP prescribed Carisoprodol (generic for SOMA). Yes I am still taking it. I take one tablet at night. The muscle relaxant made such a difference in my neck and shoulder issues. I probably would have stopped tonight, but since I played golf today, I think I will take a tablet as a precaution ----I do not want to slide backwards. I did email Dr. Dake and told him of the spasms and that I was on a muscle relaxant - he was glad to get the update. Honestly, I wish that I would have started the relaxant sooner - I was not a very happy camper and I went through unnecessary misery.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby mrhodes40 » Thu Jun 25, 2009 6:40 pm

Thanks Sharon.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Arcee » Sat Jun 27, 2009 7:28 am

Alex, I am late to this party having not logged on for a couple of days, but here is a belated 'wow' and congratulations. I hop that the drugs and wine country are treating you well. Keep us posted! And easy trip home when you head that way.
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 4:00 pm
Location: Massachusetts, USA

Postby gibbledygook » Sat Jun 27, 2009 1:31 pm

Wow!

Thank you all for your kind messages. This surgery is really pretty tough.
I am now four days on from the surgery and finally have the strength to get to the internet. The first day after surgery I had very bad headaches all over the skull. I also had severe pain in the neck and shoulders and jaw and left cheekbone. The headache abated significantly on day 2 but the pain in the shoulders and neck and jaw continued until today and have been so bad that I haven't been able to eat much except thin-sliced toast and smoothies. Today I am finally about to eat some proper food, I hope, but I still can't open my mouth much. The first day of the surgery my bladder was very urgent and I couldn't void properly owing to the drip which prevented me manually voiding as usual. Today my urgency is much much improved and the drip is long gone so I can use my hands. thank goodness. That night in the hospital I kept having to pee into a cup every hour or so as I couldn't make it to the toilet and I couldn't void properly. I would recommend a catheter to anyone having this treatment with bladder issues.

I have noticed that an MS pain in my left foot/leg has flared very intermittently since surgery but only for seconds long and is now absent. I also noticed after surgery that both knees had a very tight feeling around them but that has now gone and my left leg/knee feels great! My walking and bad motor function right leg is much the same as before. I will need plenty of exercise/physio to retrain the axons/nerve fibers in this leg, methinks. curiously I have had NO leg spasms at night since the treatment and I had been expecting quite bad spasms.

Gotta go as my wonderful husband nurse is very hungry now and we are about to have lunch in a magnificent setting in Napa.

:P
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,
User avatar
gibbledygook
Family Elder
 
Posts: 1412
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby peekaboo » Sat Jun 27, 2009 1:41 pm

Thanks for sharing Gibbs and i am glad to hear that you went w/someone and its your hubby :) Enjoy the romantic Napa Valley and mend quickly. Hope you won't have to get home to soon.

Holly
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby mrhodes40 » Sat Jun 27, 2009 2:40 pm

Alex good to hear that things are settling down a bit. I am with you it is tough surgery with regards to the neck ache/ head ache. Yikes! but you'll get less and less every day. Really stick to the rule about not looking down and turning or up and turning at the same time. That sets things off again. Keep on top of the pain meds too. Percocet really knocks my spasms down, personally. I wish you very well and hope for a quick recovery for you!
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Sharon » Sat Jun 27, 2009 4:05 pm

Alex -

Each day you will be better. I let the shoulder spasms go on to long - get yourself a muscle relaxant if you are having trouble. Also, looking down for a period of time like with reading, even eating, your laptop computer contracts the neck muscle called the levator. This is the muscle probably causing you the problems and it is going to affect your shoulder and your arm. I had the same problem with eating -- it hurt to swallow -- this was all gone though in about 4-5 days.

Take care - what a beautiful place you have to recover.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby LR1234 » Sun Jun 28, 2009 12:44 am

Good hearing from you Alex, I look forward to hearing your next update x
LR1234
Family Elder
 
Posts: 1501
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby Loobie » Sun Jun 28, 2009 5:46 am

gibbledygook wrote: I have noticed that an MS pain in my left foot/leg has flared very intermittently since surgery but only for seconds long and is now absent. I also noticed after surgery that both knees had a very tight feeling around them but that has now gone and my left leg/knee feels great! :P


This is so good to hear. I have this EXACT same issue and know how bad it can hurt. I'm excited thinking about some potential pain relief around my knee. Good advice on the bladder stuff too. I will be defintely asking for a cath.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby skydog » Sun Jun 28, 2009 7:54 am

Way cool Gibbs. Glad your getting some RR time in the Napa Valley. We are just settling in here at the Sheraton in Palo Alto. Going to try to explore the area early before the heat sets in. How long are you staying in the area ? Would be really neat if we could meet somewhere along the way. Take it easy, sounds like your doing fine. Cheers Mark
Plant a BIG Garden Live in the Moment
User avatar
skydog
Family Elder
 
Posts: 306
Joined: Tue Feb 24, 2009 4:00 pm
Location: North Oregon Coast

Postby mrhodes40 » Sun Jun 28, 2009 8:23 am

That night in the hospital I kept having to pee into a cup every hour or so as I couldn't make it to the toilet and I couldn't void properly. I would recommend a catheter to anyone having this treatment with bladder issues.


I want to say Yes indeed, right on.

I had a catheter and it was great I kept it all night...........drank tons of water no worries................ The trick is that they, Dr Dake and resident, are not as up on those kinds of thing so you have to ask for it and discuss it with them if you think it would be necessary for you. The resident that checked me out was mad they had not pulled the cath the night before he wanted me up walking to the bathroom. I could not have done it, he did not understand that disabled people do not just "walk to the bathroom" once in the night and then sleep...especially on pain meds which slows the old bladder down.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Post travel update

Postby gibbledygook » Thu Jul 02, 2009 11:41 am

Like Marie and Jeff my leg spasms have improved, in my case surprisingly so. I had NO leg spasms on the long haul flight even though I fell asleep. Usually on long hauls if I start to drift off I always always get spasms unless I've taken large amounts of berberine. Not even tizanidine has worked on long hauls. I also have had NO meaningful leg spasms since arriving in the UK or indeed since the operation. This is extremely unusual. Usually I have bad spasms on long haul flights and therefore cannot sleep and I also usually have bad spasms the night of the return. I have had very slight and imperceptible spasms when taking paracetemol with codeine and on the last percocet.

My bladder control has also been really quite good. I went to the toilet (visited) only twice on a twelve hour long haul flight. On the flight to California I went every hour and struggled to void manually. The return home I have voided manually but with much greater ease.

On the downside I have been very constipated which I believe is a very common side effect of the percocet which I ceased only yesterday. However the milk of magnesia is working perhaps rather explosively.

It is blazing hot in London with attendant relatively high levels of humidity. I am not using my cane. I am walking down stairs. I have noticed greater flexibility in my badly affected right foot.

I never really had brain fog but I am more enthusiastic about everything despite the heat.

I am trying to get the National Health Service involved. There is a contact at St Thomas and Guys in London which I am waiting on.
Last edited by gibbledygook on Thu Jul 02, 2009 12:05 pm, edited 1 time in total.
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,
User avatar
gibbledygook
Family Elder
 
Posts: 1412
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby whyRwehere » Thu Jul 02, 2009 11:53 am

Yay, Glad to hear things are going well. I look forward to hearing more...as everyone does, I think.
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service

cron