I will try to be as unfiltered and honest with you all, as I feel you deserve as clear a picture I can give you.
I was fascinated by this whole theory, because on some gut level it just seemed so darn plausible- & I was very surprised at the consistently positive results of venous problems in those with MS that Dr. Zamboni had discovered.
I consider myself one of the lucky ones - I know there are many more here who have had MS much longer and suffer more greatly than I. I was diag. about 2 years ago, with severe left side numbness from my arm down to my leg. Walking was extremely difficult. An MRI and spinal tap confirmed my diagnosis. Since that 1st course of IV steroids, I've been basically in remission of flareups, save one exacerbation earlier this year (work stress related, we're pretty sure). - I'm on copax daily, and provigil for fatigue, baclafin usually at night for muscle spasms. Basic mobility is decent, with the occasional wobble or loss of balance.
My main disabilities are leg pain, chronic fatigue, emotional lability at times, and the dreaded 'brain-fog'. The fatigue has been a constant battle and frustration.
If there is one thing that bugs me most about my MS, is that it's not readily apparent to the 'eyes' of others - I'll bet some of you suffering fatigue probably find it very hard to explain to many people - 'oh yeah, I need naps, too' - ha. or even have them 'get' you are living with a disability.
I'm a full time self employed as a film/tv composer- luckily I work at home, which makes managing the stress of the zero-sum game we all have to play with our daily energy quotient a bit easier.
I'm 3x lucky because as you know, I have an amazing partner and wife of almost 25 years! She has been an rock of support and friend through this journey, and I pray everyone else with ms has the good fortune I do in a compassionate and vigilant partner (and sometimes, yes even cheerleader: get out those pom-poms people!)
I remember on the flight up to Stanford for my MRI/MRV tests, my wife and I joked that I would probably be the ONE ms person with absolutely perfect veins - our expectations were low, but we were hopeful there might be some answers and possible solutions.
There were 2 things that convinced me almost immediately to go forward with my stent surgery later that day. Sitting in Dr. Dake's office we could so clearly see what were very damaged jugulars - the right constricted, and the left, basically a tangled mess! Here I was, starting at something so obviously broken in my anatomy - the veins draining my brian - but unlike those boatload of MS lesions in my head, we could actually DO something about this, as Dr. Dake said 'I can fix that' - wow.. something we don't often get to hear from our neurologists.
Another confidence booster for me was Dr. Dake himself. He was truly excited, compassionate, completely interested in my precise case history, and inquisitive about progress in the best possible way. And, fresh form a visit with Dr. Zamboni in London - he had a lot of conviction and confidence that this might be a key to helping us. All three of us were so surprised to see such a clear example of yet another ms case with irregular veins on our 1st try.
I knew there were risks, but these were realtively very small- the risk/reward ratio felt in my favor: in the possibly of bringing symptom relief or even reversing the course of my ms was too good to pass up. At the very least - something clearly anatomically wrong could be improved.
We all wanted to take some time to think it over (and my travel schedule prohibited going ahead the next day) so we flew back to So Cal - and then scheduled surgery about 10 days after our first visit north.
Because my left jugular was especially tricky to address, I was in surgery about 4 1/2 hours. I was never really 'scared' but more fascinated with how miraculous all of the technology and expertise being deployed were. Lying flat, it was hard to see anything of what was going on, but I could 'hear' it.
Pain was intense in my head when we were pressurizing the veins and then when the stents go in. One unexpected difficulty was that I had bouts of really bad nausea feelings at times in the OR. (it came and went, but was tough, although I didn't actually throw up). During my recovery week, there was stomach discomfort for about 5 days, which finally broke, along with the throbbing head pain. In discussing this a few days after surgery, Dr. Dake surmised that it might possibly a result of proximity we were to spinal fluid regulation in the head, or the pressure changes occuring and being adjusted to due to the new circulation pattern. The very minor incision (at the groin) was very tiny, and healed very quickly.
I spent the night there - I was quite exhausted and a bit dizzy from all of the IV pain killers. and slept a lot (good call)
Back home, there we a few days of panic - where it was like, 'what the hell have we done here'?? - anybody with ms knows a 'new' pain always brings a bit of panic - like, 'oh no, a new symptom I'll have to manage from now on. So now my head feels like it's going to explode, and my stomach aches, great!
But there were a few encouraging signs even in these early days. 1st, was a sensation of more alertness - even in the OR - once the stents were going in, and more blood flowing - I had an odd sensation as if my brain fog was somehow lifting. Since then (It's exactly 2 weeks since my surgery) - this alertness has continued and improved.
The other hopeful sign so far is that my fatigue is measurably better. When I wake up from sleep - I actually get up feeling rested, and ready to start a new day (!).. a feeling I realize now I have really not had much in the last 2 years. Most mornings I feel as if I could just stay in bed practically all day.
I've also been the 'first one up' in our house a few times in the last 10 days. Before my diag. I would sometimes enjoy getting up quite early (5 am or so) to get a quiet start to my composing day. - last friday I woke at 4AM - (which was of course too early, but it was so fun to be up and awake in the AM hours which I love so dearly for their quiet. I remarked to my wife - I could probably count on one hand the number of times in the last 2 years, I was the 1st one out of bed here at home.
This is not to say the fatigue has 'disappeared' - it still catches up with me eventually, but much later in the day, and the lying down time is more restful- and when I get back to things, I feel more refreshed and ready. And the best part of all - the end of my day (which is the left-overs my wife and 14 year old son get) is of a much better quality for them thank God. In general, my head just feels more 'clear' - like it used to feel.
That's about all I can think of for now, but I'll try and update this periodically as things improve (or don't). I'll try to be honest, as I'm sure many of you know life with MS is often one step forward, only to be followed by the dreaded 2 steps back. I'm trying to keep very realistic expectations of how things play out - but hoping and visualizing the best possible outcomes.
For all of you venturing this way - we'll know more after Dr. Zamboni publishes more of his findings and case histories in June - please understand this is still a relatively untested , yet very promising new approach. Anyone thinking about it should go in with both eyes open, and realisitc expectations of possible outcomes. Know you are introducing a 'foreign object' into your anatomy which could have possible ramifications if for some reason your body does not incorporate it properly.
If there is one small insight I think I've gleened from living with MS, it is a sense of acceptance of impermanence, and mortality we all must face (ms or not). I am more happy with living each day for whatever it brings, up to the best quality and enjoyment I can.
But... I am also extremely hopeful for us all. I had thought at the time of my diag. that we might see some major breakthroughs in our disease, and to see something as promising and revolutionary as this come forward is, nothing short of miraculous from where I sit, and I wish us all the very best, whether this is 'it' or not.
If, after reading this, you have any more questions, please feel free to ask, and I will answer as best I can.
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It's good to hear from you and thank you for your candor. As you may know I'm going out in July and I just know that I'M the one that will have normal veins . I actually almost feel that way since I was such a hard diagnosis since everything presented as Uthoff's, or only symptomatic when heated up. Plus I had an unremarkable initial cranial MRI since all my stuff was on my spine. So if they don't see anything, I'm going to say "wait just a second and let me climb a couple of flights of stairs and let's do it again". That's what it took for them to see anything inflamed with my original ON, but I now have symptoms that are present 24/7, so I'm probably just going through the same process of doubt that we all seem to be going through.
Once again, great to hear from CH (Cheer's Husband). You're somewhat of a legend on here since you've been written about in the third person for years now! Great to cyber meet you.
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Did your numbness and walking difficulties get cleared by your original steroid doses? if not, may I ask if you have have noticed ANY changes in regards to these symptoms?Jeff_wMS wrote:I was diag. about 2 years ago, with severe left side numbness from my arm down to my leg. Walking was extremely difficult.
In a way, I am almost the opposite of symptoms to you, I have no noticeable brain fog (I work in a technical field, and prefer to work at the end of the day). The majority of my symptoms are physical disabilities, although physical fatigue is included in that group. Pins and needles in my feet are also very strong, along with balance issues. I have an EDSS of about 3.5. I was diagnosed about 4 years ago, however I was misdiagnosed 10+ years before that.
Take Care,And the best part of all - the end of my day (which is the left-overs my wife and 14 year old son get) is of a much better quality for them thank God. In general, my head just feels more 'clear' - like it used to feel.
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YOU WERE AWAKE!?!?!?!?Jeff_wMS wrote:Lying flat, it was hard to see anything of what was going on, but I could 'hear' it.
It's really a helpful thing to hear from you in person. It's always a nice thing to share thoughts with Cheer, but there is something very "hard hitting" about reading your personal thoughts (that's a good thing). I will be here, very interested and appreciative. Thank you Jeff.
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
Jeff - you mentioned spaticity. is that changing at all....This is my worst symptom which is severe.
Any shows that we can be on the look out? I would be very interested to hear your stuff...I'm a full time self employed as a film/tv composer
A big thank you to you all, both longtime members here and also the 1st time poster Rokkit who joined to respond. Thank you all for the warm welcome to your online community.
Loobie - I will be very curious to see how your tests present - one of the great things about the mrv is that it can 'see' things other tests can't, and Dr. Dake is very much intensely curious about finding each patient's venous issues. My jugular issues were so high in the head that they clearly showed on the mrv scans, but the doppler ultrasound didn't show anything. And even if you don't test positive for anything - know that is also a great service in terms of finding patterns and exceptions to it as well - thanks for going forward.
Yes, 'cure' - the IV steriods helped return my mobility to almost normal - my recollection was that even after the course, there was a gradual improvement in that area. - and yes, it always perplexes me too how the disease manifests in different individuals - one area I think Dr. Dake is exploring w/ the nature of the venous problem is in how the reflux stresses the spine vs. the brain areas.
yes, I was awake(!) - I'd guess it's probably standard (and safer) for (and heart artery stent patients as well), but I'm just guessing here.
peekaboo - my spasticity is usually night-time, and random - does not see to be directly tied to a physical activity, and is not my worst symptom. Occasionally I'll get some under stressful situations during the day, or just randomly. One interesting thing was post OP: I had some spasms in 'new' areas I hadn't really noticed before - esp. the 1st week post op. My guess is that things we 'happening' up there. Cheer and I kind of took it as a potentially good sign- i.e. the lesions were getting more blood flow and trying 'deal' with it (and hopefully begin to repair themselves...?)
re. music, If you ever watch 'Monk' or 'Ugly Betty' you can hear my music - I'm probably giving away my identity here, but that is kind of the point - I haven't made it a secret with the folks I work with for the most part, and it's been an easier way for me to deal- at some time if I can use my leverage as a semi-public person to help more people like us and attention to MS in a non- self-promotional way, I will.
I'll post more as I learn, but I remain very hopeful-
love and healing to you all,
Thank you so much for sharing your story with us. You bought tears to my eyes when you spoke about MS symptoms not being apparent to the eyes of others.
Cheer had mentioned that you had some numbness on your leg which has disappeared since surgery. I was wondering how long did you have the numbness and how long after surgery did it take to disappear.
I was also wondering what type of material the stent is made of. Did Dr. Dake mention if the body could reject the material since it is foreign?
All the best,
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