More On Eds, Neuro Things...?

[comfortzone]

Has anyone here with EDS seen the duo of Dr. Francomano and Dr. Hendersen from Baltimore? I guess that a lot of these crazy bodily symptoms we experience involve not only cardiac things, but neuro things as well. I have no idea how common any of our experiences are as everyone is unique and everyone's cause for symptoms likely stems form certain 'main' issues. Those issues being wide and varied for sure.

Anyway Dr. Francomano does Adult Genetics ... and Dr. Hendersen is a Neurosurgeon well versed in those neck things like Chiari ... and things that EDS patients experience with greater frequency that make us a 'class onto ourselves' over and above having rare-ish conditions to begin with.

So just sending a shout-out to any whose seen one or the other or both ... to ask how to best prepare for my upcoming appt. in early December.

Doctors have always 'minimized' my MRI of the cervical and lumbar spine even though it says severe stenosis on multiple levels etc... So I never thought a thing of it -- as they acted like everyone has this by age 50.

However there might be more to it -- as before I even saw the geneticist the genetic counselor arranged for the neurosurgery appt. So I went on line and read how we bendy types present with lots of symptoms sometimes that can relate to how we degenerate faster in our spine......& that most tests won't pick up on this kind of situation. So the gold standard for these EDS/neuro specialists is the sitting up neck MRI as opposed to the laying down neck MRI... Kind of interesting.

For a time I had these symptoms of dropping things, my arms feeling like they were too heavy to even be attached to me (wanted a sling for each arm), and to hold a glass of water my hand would shake and I'd be at risk for dropping or spilling. However over time these symptoms pretty much resolved this past year - only had them 3 mos or so. I just have some neck pain and soreness...but heck most of me is sore....so I never really pay much attention to it.

Can anyone relate to any of this....with or without dysautonomia? I guess for neuro - I have small fiber for sure...they say from a hbA1c of 6.0 perhaps. But aside from chronic L5S1 radiculopathy (of which I have NO idea what symptoms that causes) and my MRI's showing lots of degeneration and foreaminal stenosis severe in nature..I'm told I have no neuromuscular conditions such as MS or Myasthenia Gravis as initially pondered. Thank you :-)

[mkoven]

If you do a search on my posts about a year ago, I talked about my visits with both. They are definitely worth your while. FH is of the opinion that all ans stuff in eds patients is from brainstem compression. This is a little controversial to say the least. But I have to say that I was put in a hard neck brace a year ago that I still wear and it has helped ALL my ans symptoms quite a bit. I have mild chiari, but also instability, with an abnormal clivo-axial angle. If I flex my neck forward, I put pressure on my brainstem. No surgery for me at this point.

[comfortzone]

If you do a search on my posts about a year ago, I talked about my visits with both. They are definitely worth your while. FH is of the opinion that all ans stuff in eds patients is from brainstem compression. This is a little controversial to say the least. But I have to say that I was put in a hard neck brace a year ago that I still wear and it has helped ALL my ans symptoms quite a bit. I have mild chiari, but also instability, with an abnormal clivo-axial angle. If I flex my neck forward, I put pressure on my brainstem. No surgery for me at this point.

Thank you so so much .... I'm really appreciative that you posted this. I have read all I could find on the neuro things on-line and came to that conclusion - that there are a few 'doubters' of this thought process as regards our symptoms... yet in the end it seems anecdotal stories are where anything fruitful begins! Word of mouth -- successes shared ... It is always hard to have 'fancy' doctors detract people's honest stories or accounts of what has helped etc.... Recently had a doc say that about EDS and local anesthetics... & he even countered what my surgeon had experienced with me having huge b/p increases and tachycardia while under general anesthesia and a local block - when he made the incision.... He was quite contentious about things and he was a geneticist... oh well.

Glad the visit will be worthwhile ... I'll listen... I won't be rushed to invasive treatments ... but will definitely take their ideas to heart.... Visionaries are often labeled Quacks..... most likely because many of them are. But not 'all' of them... this we know. If all the money were taken out of doctoring maybe those with controversial treatment schemes and ideas -- people would give their ideas a fair-er shake.... But as it stands a surgeon wanting to do his craft - surgery - with earned payment when no one else is... they'll get detractors for sure!

[dakota]

My daughter has seen both and I agree, I think it will be worthwhile. One note, though -- You pay up front for Dr. H and they say they will submit the claim to your insurance -- they do, but they neglected to mention that they don't participate with my insurance company, which is a huge company. So I ended up having to pay the entire bill myself, which wasn't cheap. Might want to check into that if it makes a difference to you.

[comfortzone]

My daughter has seen both and I agree, I think it will be worthwhile. One note, though -- You pay up front for Dr. H and they say they will submit the claim to your insurance -- they do, but they neglected to mention that they don't participate with my insurance company, which is a huge company. So I ended up having to pay the entire bill myself, which wasn't cheap. Might want to check into that if it makes a difference to you.

Excellent thought......yes I will definitely look into this tomorrow. I guess they are sending me a packet in the mail.....with paperwork etc... But I will definitely look into the insurance aspect of things. I'm so sorry you had that experience... It will likely be cost prohibitory if my insurance doesn't contract with him to be in network....

But I just found out someone cancelled for Dr. Brad Tinkle in Cincinnati next Friday - so I am going to do that appointment for sure.... Maybe then I won't even need to see Dr. H. Or if I do...I'll know so by an EDS expert...that it's necessary or not. I want to be done seeing doctors for a long long time -- just like everyone here! It's been only a couple of years of this seeking answers - and I'm lucky most have come in that two year window....but it's been a long and arduous road... The last little bit is to nail down how EDS fits into all of this.........and if my diagnosis for that is correct etc... I was actually given Benign Joint Hypermobility Syndrome...but many experts say now it's the same as EDS-HM.