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Posted: Tue May 19, 2009 9:26 pm Post subject: Hi from Jeff, re. my stent treatment at Stanford
Hi everybody! This is Jeff (aka 'Cheerleaders husband'). Yes, I'm actually NOT a fiction of my wonderful wife, but a real person. I'm happy to share with you my experience at Stanford for whatever help and information it might bring to light. Those of you familiar with this thread probably already know about the work Dr. Zamboni has been exploring with our disease and this completely new model of a possible cause, and treatment for it. - warning - this is LONG....
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.
yours,
Jeff
Last edited by Jeff_wMS on Wed May 20, 2009 4:56 am; edited 1 time in total
I've lurked here for a year and a half or so. I decided to register and use my first post to thank you for giving such detail about your experience. Your story is an inspiration that is giving me hope for the future.
Joined: Sep 12, 2006 Posts: 2093 Location: Dayton, Ohio USA
Posted: Wed May 20, 2009 5:23 am Post subject:
Jeff,
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.
Joined: Jan 06, 2005 Posts: 338 Location: Massachusetts, USA
Posted: Wed May 20, 2009 8:04 am Post subject:
Thanks, Jeff. Your descriptions is really helpful as it so realistically captures the experience. I think I will share it with my family and friends who are wondering (in a positive way) about this whole thing.
Joined: Jul 28, 2005 Posts: 2016 Location: Sydney, Australia
Posted: Wed May 20, 2009 8:22 am Post subject: Re: Hi from Jeff, re. my stent treatment at Stanford
Jeff, THANKS! and I am sure we all hope the best for you, and to hear about it. It makes a hell of a difference to hear your actual thoughts and descriptions in the first person.
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.
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?
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.
Joined: Jan 15, 2009 Posts: 325 Location: Connecticut
Posted: Wed May 20, 2009 8:31 am Post subject:
Jeff, Great to meet you and a big cyber hug out to you and Cheer for all you've done and been through. I'm very thankful you're feeling better and things are going well. Your graciousness in sharing your experiences and allowing us to be a part of it is overwhelming. I truly thank you for that. I believe it brings us knowledge, hope and a special insight as we consider our own options and how we decide to proceed. Stay well.
N
Joined: Nov 08, 2004 Posts: 1202 Location: Colorado
Posted: Wed May 20, 2009 8:42 am Post subject:
Jeff - thank you for telling your story. Cheer has done an amazing job keeping us informed about your MS, but having you chime in with your own thoughts was great. It is wonderful that you are already experiencing some positive effects. Fatigue is not one of my symptoms but it is a symptom of my brother - he struggles with it everyday. I cannot imagine what you all have gone through day to day. How great it is that you are now able to "be" with your wife and son at the end of the day
Quote:
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.
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Wed May 20, 2009 10:35 am Post subject: Re: Hi from Jeff, re. my stent treatment at Stanford
Jeff_wMS wrote:
Lying flat, it was hard to see anything of what was going on, but I could 'hear' it.
YOU WERE AWAKE!?!?!?!?
Jeff,
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.
Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Hey thanks everybody for your wonderful responses so quickly. This is a great community, and I feel very 'late' to the party- I'm off to work, but I'll wade through and respond to you all more later!
best to all,
Jeff
I don't want to sound like a broken record..But thanx Jeff for communicating with us. you bring us hope. Cheer good job. it sounds like you have a great friend/hubby.
Jeff - you mentioned spaticity. is that changing at all....This is my worst symptom which is severe.
Quote:
I'm a full time self employed as a film/tv composer
Any shows that we can be on the look out? I would be very interested to hear your stuff...
Thanks for the post Jeff! It's great that you are doing this for others. I will hold off on asking questions and let those closer to getting treatment get their answers first. I have to add that your wife is a wonderful person (as if you didn't already know) she has been so helpful to me and so many others on here. There has to be a special place for people like her in heaven. Thanks again Shannon
Posted: Wed May 20, 2009 10:33 pm Post subject: Thanks, a couple other things, and few answers-
I know we of all manage several different meds and supplements daily (what fun, eh? esp. when we have to travel... ugh): I should also let you know that post op. you need to be on a course of blood thinners while the veins 'form' around the stint area, and to make sure everything stays flowing properly- Dr. Dake's regimen is plavix (2x daily), a baby aspirin, and coumadin calibrated to your PT levels. I'm at 7mg now - so.. a bit more maintenance and meds to take care of. I was worried that these were contributing to my nausea, but luckily the nausea dissipated in tandem w/my throbbing head pain, and the blood thinners seem pretty mild in terms of any other side effects.
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,
jeff
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?
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. 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.
