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Going To The Cleveland Clinic

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On Monday I have an appt. at the Cleveland Clinic. My PCP's office faxed my records pertaining to my spine instability/cervical/cranial instability----blah, blah, blah.

Anyway, I've been having some problems. Pain on right side of my head---lower skull base radiating up to temple. Still have swelling in neck near right clavical. Latest CT scan shows opaque area in mastoid area. this was just a couple weeks ago. I had mastoiditis show up on an MRI in 2005. This is along with various herniated disks, congenital cervical spine stenosis ect. As you know I also have this messing vertebral artery on the left, and the right one is buldging making up for the left missing artery. Then the pannus growth on odontoid bone, and the cervical/cranial instability.........so on and so forth. you've all read it a million times.

I would like to say that this mastoid issue is what makes me wonder, as I don't have ear infections in meddle ear, and I do not have a histroy of this.

They need to put all the puzzle pieces together. This opaque area is showing something isn't right in this area of my lower right cranium, and if you read the rest of my issues it makes sense that this abnormality might mean something.

Anyway, they have me going to their neuro muscular area after the triage on where to put me. This doesn't make any sense, but the woman I spoke to yesterday took some nots on what has been going on lately, and she was very sincere and kind. She told me I was a strong person to be dealing with this, and still be able to relate my health information so well. I told her there are days I can't, and That I've been told I have "anxiety issues", or "psychological issues". She said she has spoken with people who really do have these issues, and said I definately DON'T, and said i'm just a person who needs to have my "physical issues" addressed. My PCP wants another opinion other then my orthopedic surgeon who want to do a fusion on c1 and 2. He's an excellant surgeon, but my PCP would like to have a neurosurgeon take a look also considering the vascular issues.

I talked to her yesterday, and she said she could have me in the neuro dept. by Monday next week. She said even though it's the neuro muscular dept., we can start there, and they will refer me to a NSG. She said make sure I bring all films.

I hope this won't be another wild goose chase. This pain I'm having is worse then I've ever had, and although I'm limited already, I'm even more so now.

My guts are slowing down more also, and this in no good because I face the cleansing process for the virtual colonoscopy I'm having on Wednesday. Fun, Fun, fun.

This better not be a wild goose chase. I will have a lot to say about it if it is.

Maxine :0)

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After all that has gone on, I can understand your apprehension about the appointment. Maxine, I really hope you will finally meet up with someone who is able to put this all together for you and get you pointed in the right direction, treatment-wise. Hope all goes very well for you on Monday. Let us know!


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Thank You----------- :(

I'm praying someone there can help me. I get so sick of the obvious NOT being noticed,

So here we go.

The virtual colonoscopy is Wednesday-----------if you could keep me in your thoughts an prayers on this.

My poor brother didn't know he had cancer until it was too late. It had moved to the other side of his colon, and into 17 lymph nodes.

I wonder if my mother's cancer started in her colon-------------we'll never know, as she was cremated. Her whole abdomin was full of cancer before those dimwits found it. We know her brother had colon cancer-------------he died two weeks after she died.

The pressure of all of the problems from EDS, POTS, and spine instability along with the fear of them finding cancer is overwhelming. My guts are always bloated, and it's rare for me to be "regular". I had a good bout of "almost normal", and I'm racking my brains to see what it was I ate that worked for me.

Sooooooooooo Scary.

Maxine :0)

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Hi Maxine,

Not to discourage you, but I just spoke with the neurosurgeon I saw in Maryland on the phone about some new symptoms (trouble swallowing). I'm now back in Illinois and looking for someone to follow me for my instability. He essentially told me that there are only four people in the country who treat this issue-- him (Fraser Henderson in Bethesda, MD), Daniel Heffez, Dr. Oro in Colorado, and Bolognese at the Chiari Institute. In my case, if I were to opt for surgery, it would need to be not just a decompression for the chiari, but a fusion of skull to C3. Don't think I'm ready for surgery, but with my new swallowing issues, I want someone knowledgeable, closer to home, "in the loop." I'm trying to get in with Dr. Heffez in Wisconsin.

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Maxine i really hope that you get some answers!! how are you seing at the cleveland clinic? good luck to you


Mkoven- ive seen dr heffez in Milwaukee.. i was quite pleased with my appointment with him...If I decide to have surgery i personally would choose him.....

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Thanks-- :);)

Dr. Heffez did my cervical spine surgery, and I thought he did a great job. At the time he was not aware of my EDS, but thanfully fused and added a titanium plate. I did not know I had EDS either. Fusing the areas fused, c5, 6, and 7 helped the surgery to stay sucessful, and insured the doner disks didn't collapse.

I find that Dr. Heffez is meticulous, and his bio was impressive. He has gifted hands, and also has the gift for looking outside the box. BUT, I don't really think it's so much looking outside the box, and just using common sense, and I don't understand why other medical universities haven't disgussed this problem, and I'm surprised so few physicians/NSGs know about cervical/cranial instability related to EDS. I know some of them know about it related to RA.

What's the big deal realizing that hyper mobiile joints and ligamants from a connective disease give the same result as RA.

I guess some docs just can't get out of that comfort box. Climbing-Up-the-Walls.gif

It takes courage to go and step out of the box and actually have the passion to HELP patients.

Maxine :0)

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