What Would You Do?

[Maxine]

The major clue is Pannus growth on odontoid bone, usually indicative of cervical/cranial instabliity----(this is the smoking gun for neurosurgeons to pay attention to). Since May of 2002 when I got my first clues that something more then my POTS was going on, and I started to get several more clues. Dr. Heffez found that my posterior fossa was small, and showed some concern for the right vertebral artery being enlarged.

He said the one on the left was hypo plastic, which I found out later the artery isn't even there---(in the brain anyway). The big obvious thing was the two herniated disks on c5, 6, and 7 which Dr. Heffez said I needed replaced ASAP. This was done the following month. Since then the surgery helped this area just fine, but everything else has begun to fall apart above and below the area. The c5,6, and 7 area is held together with a fusion, plate and screws.

OK----we all know by my previous postings that the boat load of doctors I have seen so far have four docs who get it---maybe five. However, only two surgeons take it seriously. One I'm steering clear of due to their ethics, and the other is an orthopedic surgeon who wants to do a c1-2 fusion, but I have other complications with the vertebral arteries. The one on the left is missing in the brain, but not my neck-----hmmm, where did it go??? Now with this pannus growth, enlarged right vertebral artery, small posterior fossa, partially blocked cerebral spinal fluid which was on the CINE MRI report, the swelling on the right side of my neck near clavicle--(since may),the scattered lesions in deep white matter of centrum semiovale, and frontal regions, and FINALLY the fluid/opification in the right mastoid air cells, do you think someone might pick up on this. I do NOT have any history of middle ear infection, and just had a full work up by an ENT. He said maybe I had past infections. However, this didn't show up until 2005, and I think I would rememeber a middle ear infection of this significance spreading to the mastoid area. SOOOOOOO, what is this fluid? From what I read it could possibly be a CSF leak---------YA THINK?.....no telling. It just seems that someone better pay attention, as the pain in another factor is this mess.

I'm now feeling a bulge in the back of my throat---like it's coming from the other side of my neck into the back of my throat. I'm also getting more significant pain in thoracic spine that pretty much brings me to my knees.

Should I discuss any of this with my EDS doc? He's been one of the few who has tried to find someone to help me with all this. So far all I've had was dismissal---and the latest was from another orthopedic surgeon who told me I need some form of PT---possibly aerobics. A NSG sent me to him, because he didn't feel there was any significance to my instability. I suppose the NSG knew what he was doing, and thought this guy would intimidate me enough to stop my need from someone to tell me something is wrong with me---(possibly thinking I want attention-----who knows! ) They got the wrong girl, it's doesn't faze me, and in fact when he suggested aerobics and blew off my smptoms I filed a complaint with the ombudsman dept. She took my complaint seriously, or she was appeasing me. Either way, now they know I'm not putting up with any rude or unethical behaviour from anyone there, I don't care how well "esteemed" they are. I do have a neurologist who is willing to make me his regular patient at the Cleveland Clinic, and I see him again on Dec. 21st.

Meanwhile, my POTs/OI is takig a dump on me, and I'm assuming it's because of the other issues are getting worse.

Just loving all this---NOT.

Maxine :0)

[Maxine]

Bumping this---as I don't want it to get lost in the shuffle.

Sould I discuss this with my EDS Doc?-----just need opinions----

I'm not sure where to tun on this.

I'm praying this little virus doesn't turn into a big one---getting sniffles, and left ear pressure---along with the left side of my face hurting---but mild. It is annoying right now, but not knocking me down---just a little more worn out then my usual.

We have to drive to cincinnati to see the EDS doc Friday.

Maxine :0)

[delphicdragon]

I would mention it to him. I'm still looking for a specialist to treat my EDS (the ortho is frustrated with me now). I figure it can't hurt to mention it, maybe he'll have some ideas or may have seen something like this before. Good luck with your appt.

Sara

[Maxine]

Thanks Sara,

He's definately aware of all of this, as he is the one that recommended to orthopedic surgeon who wants to do a fusion. unfortunately it's more complicated then that, and he and I both agreed we need a neurosurgeon on board. At the very least to watch things closely, and taking this anatomy at the back of my head seriously. I'm just afraid I'll scare him away, and he's an excellant EDS doctor. He's tried to find a neurosurgeon, but he and another geneticist from NIH said NSGs don't understand the connection of EDS and cervical/cranial instability. It's not because of a deformity of the skull, it's because the joints and ligaments that hold everything together are stretched out and not stable enough to support my head properly.

It's seems they don't get this even though it makes perfect sense, and the evidence is there, but because it's a little bit of this, and a little bit of that----they won't investigate it further. I don't know how big this swelling on the side of my neck needs to get before something POPS, but it looks like they won't take it seriously unless something more drastic happens.

Maxine :0)

[Tachy Phlegming]

Hi Maxine,

I'm responding only because so few other people are even though some of them probably know your history a little better than I.

I think it's a hard call to know whether to discuss it with the EDS doctor.

I think what I would do is apologize for bringing it up but you're not getting the appropriate care from other physicians and you know he can help because he understands the problems you have. If he's intelligent or nice (there's not much of a distinction when it comes to helping patients), he will understand that patients are not supposed to be apologizing for asking for help based on their rational concerns and he will go all out to try to help you get the help you need.

If he becomes completely unreceptive, then you'll end up not discussing it anyway.

Make it clear what tests/procedures you want done for this problem -- what are those tests and procedures that you want by the way?

And what was supposed to be discussed at this visit instead of this problem which seems to be a very significant current problem?

Tachy

[Maxine]

Thanks---I appreciate that........ I don't think anyone else knows what to say, and that's why they aren't responding........ At least it's sounds good---lol.

I just don't know how he'll respond, but past experiences have been good with him. A close friend of mine was a patient of his and she died following lumbar spine surgery or a ruptured aorta----complications of her EDS. She was supposed to go with us, because she needed a ride----we have our appts. scheduled together. Her aorta has been thinning, and she had been to three different ERs here in town, and all blew her high BPs, and narrow pulse pressures off as an "anxiety" issue. I don't want to put a lot of pressure on him for the problems I have that are presumably related to my EDs, but yet no other doctor knows my history as well, other the Dr. Grubb.

I've had more tests, and the testing from ENT points more in the direction that this mastoid fluid is caused by something else other then a middle ear infection. However, the other surgeons I saw just dropped the ball and said they don't know why this fluid is there other then possible PAST ear infections. As I said this didn't show up until 2005. A CSF leak can give this appearance. Now the fluid has shown up again on 2 recent CT scans, and another MRI.

Something about this fluid being there for over 4 years that points to something not being "normal".

At least I have a neurologist at the Cleveland Clinic who has taken me on as a regular patient because of those leasions. I'm on disability, and I'm sure if I had the daily stresses of working full time like I did for nearly 22 years my symptoms would be more progressed. The last three years I worked before becoming disabled was as an office mgr. with a lot of responsibilities, and 50 hour weeks. I'm so thankful I was approved for SSDI.

Maxine :0)