Gibbledygook's stents

[mrhodes40]

Alex I am so relieved for you and your little Arthur. you came through! God bless you all! I hope you begin to feel better now and can follow up on your own health.

Keep up your shoulder exercises; my accessory nerve regenerated but it still needs ongoing trapezius exercises to keep the shoulder issues at bay... Headache>? yes me too, when the shoulder is bad usually after typing a lot, and obviously related to the shoulder issue. Dr Dake suggested a short term aggressive anti inflammatory regimen to knock out the last of the inflammation in the stent area. Maybe ask someone if that would be OK in your situation? Don't know this soon post partum if that is reasonable or not.

I am so glad you are done with pregnancy. It is not that fun really..... yours sounded really the limit

But I am so glad for the great size of that little one, you'll be buying 6 months sized clothes right off for him. and those apgars, wow! after all your blood pressure issues! REALLY great news. What a miracle.

Enjoy your sweet baby Alex.
marie

[gibbledygook]

Thank you, Marie! My husband and I are over the moon with Arthur. We are exceptionally lucky.

How did you find the Bioness walk aid? I recall that the first few sessions of using it were quite tricky for you. I wonder if it eventually was helpful.

By the way, the myoclonus that plagues me during the 2nd and 3rd term is practically back to the post-stent lows. Thank goodness!

[mrhodes40]

How awesome the spasms are going again! the spasm thing is so weird--why did it get better? how did stents fix that so much for us? strange

Mixed feelings about bioness vs walkaide.

I got the bioness it worked better with my walking style, it has a piece that goes in your shoe and when your heel starts to come up and the weight goes off the heel sensor it triggers the zapper up by your knee and picks up your foot...nice!

walkaide triggers the foot zap when the tilt sensor in the knee strap--the pnly piece to the walkaide--senses the knee bending. works fine; IF YOUR KNEE BENDS. mine do not bend much. No body's knee bends if they step to the side either, so walkaide doesn't help there.

but here's the bioness thing there are three pieces and all have to be charged and ready to go all the time. Not charged up= ain't going anywhere.

Walkaide the one piece only is needed and it works on standard batteries. Just keep a fresh set in your purse. You can also go barefoot with walkaide.

Bioness also requires certain features in a shoe for the heel piece to wrk wel.

All that having been said I am glad of it. It is better than a AFO by a long shot. And I have cute girl shoes for the first time in years. I just sit and look at my fee t sometimes in vain reflection of the cuteness of my shoes.

Arthur will be toddling before you know it... enjoy every second of his babyhood...
marie

[whyRwehere]

Congratulations. I had to search for this info, as I missed the announcement. Very happy for you and very relieved. Phew!

[CureOrBust]

I can not believe it slipped by my attention either. CONGRATULATIONS!!!

[gibbledygook]

This is my latest and very brief update for Professor Dake:

I continue to experience improvements in bladder and clonus but the walking remains worse than pre-pregnancy. I have barely noticed any phosphenes for several weeks. The left leg sensory deficit has been quite active especially around the knee. The headache continues to be painful and is worse on moving the head/neck in various ways. I haven't had any dysphagia for a few weeks. All in all I have been feeling very much better. I have now stopped the low molecular weight heparin and take daily 75mg of aspirin.

The walking has since shown improvements with much less stumbling and foot drop.
I am amazed at how bad pregnancy was for my MS. I was told by the neurologist that I would likely feel better. I was also under the impression that I would likely feel worse post partum but the opposite is true. Mmm.

[Drury]

Gibbledygook,

Thanks so much for the update.

Glad that you are noticing improvements post partum and yes it is odd that you are feeling better now as pregnancy has seen to be beneficial to people with MS - you seem to have things in reverse but perhaps the stents are doing what they are supposed to now?

Really hope that you see continued improvements.

All the best,
Drury

[gibbledygook]

Here is my latest monthly update for Professor Dake.

Recently my walking has improved somewhat and may be benefiting from my resumption of curcumin, capsaicin and salvia miltiorrhiza in addition to low dose aspirin. My bowel function is also much better and again I suspect the capsaicin. My body has really begun to look and feel recovered from the pregnancy which I now realize is an absolutely extraordinary stress on the body. I have visited a cranio sacral osteopath and we have concluded that the headache which started in the 2nd trimester is owing to tension in the shoulder and neck area and that I must regain abdominal strength in order to reduce that tension. Unfortunately the pregnancy produced an abdominal hernia and the obstetrician only gave me a less than 50% chance of the muscles knitting back together. However he recommended I try to get pregnant again and that he would stitch the abdomen back together on a 2nd caesarian! Great. My right hand has been feeling much less numb and the motor dysfunction which struck in the 2nd trimester has very largely gone. the sensory deficit in the left leg has been quite active again especially after walking. The movement induced phosphenes have not remained in abeyance but appear from time to time. The shoulder spasms are also still evident. The myoclonus or night spasms are beginning to feel much as they did after the stent operation in that I can avoid them by pressing one leg over the offending foot or by stretching. The bladder control is getting very much better and I rarely have urgency but do have hesitation. I have attempted to plot a chart to show the main symptoms and how they have changed.

[gibbledygook]

a new attempt at posting improvements chart:

[CCSVIhusband]

Gibbles ...

Great to see that since your pregnancy went term, that the changes have been for the positive ...

Is that a fair statement? I haven't been around much to follow lately ... so I hope so.

Can you speak to that?

[NHE]

Hi Gibbledygook,
Just curious here, what units are used for the Y axis?

Thanks, NHE

[gibbledygook]

Hi, yes I have improved dramatically since the delivery of Arthur.

I had a certain amount of difficulty in trying to develop a chart. I have kept a record of how I was at worst before the stent operation and described this as 100% per symptom, as a reference point. Zero disability was given a score of 0%. I then just indexed all symptoms to 100 for the moment immediately before the operation. The units are based on the assessments I give every month to Professor Dake for each symptom with reference to my at worst experience before the stent operation. The units are necessarily subjective but some are based on objective measurements such as length of time between toilet trips. The chart is really just to provide a clear visualization of my progress or, thankfully, now improvements since the stent operation and delivery of Arthur.

[gibbledygook]

Just back from a meeting with Dr Simka who checked my stents with a Doppler. Here is his report:

Right internal jugular vein - stent is patent, no signs of thrombosis, intimal hyperplasia, pathological valve in the junction with brachiocephalic vein, with slight reflux in the area of the valve.
Left internal jugular vein - normal flow, stent is patent, no sign of thrombosis and intimal hyperplasia.

I now need to decide whether to have the valve ballooned. Encouragingly he said that the valve was malfunctioning when my head was tilted towards the right and that otherwise flow was good so I may just jam my head between several pillows to prevent tilting.

[CCSVIhusband]

That's great Gibbledygook! Can I ask how come you're not posting in the CCSVI forum though (I may have missed that somewhere along the way) ...

If it were me, I'd have that valve fixed ... but again that's just me - and I know you've been through a lot in the past several months.

All the best to you!

[LR1234]

Hi GG,
Good to hear that everything is essentially good. If It were me I would leave it for the time being. If you feel a lot better since Authur's birth and are not progressing I would hold off. x