Talked With Dr. Grubb's Office

[Maxine]

Hi----

Monday night I noticed the prep for "virtual colonoscopy" was double of what a normal prep was for the standard colonoscopy. I started to panic a little wondering what my BP would do, as I'm feeling fairly bad lately. I've been on a waiting list to see Dr. Grubb, but I haven't been calling weekly to see if there's been cancellations. Does anyone know if Dr. Grubb has been taking appointments?

Anyway, I talked with a couple of Dr. G's nurses, and one said he wasn't there, and the other said he was there, but in the cath lab. I told her what's going on, but decided to not have her pass the information to Dr. Grubb, and said I'll call my PCP. My PCP is very understanding, and takes my OI seriously also. We discussed my visit to the Cleveland Clinic, and my increasing muscle weakness. I told him the Neurologist CC is ordering an EMG, and will see me back in two months, and they also scheduled me to see a spine specialist which is probably a waste of time. As Mkoven said, there's only about 4 NSGs who deal with cervical/cranial instability related to EDS.

My PCP takes my Blood Pressure himself, and today he started it sitting, then he always takes it standing. He said it was in normal range sitting, then he waited about a minute before taking it standing. IT started to fall pretty quickly, then he couldn't get a reading. He said there's no way I'm even doing the colon prep at home, not even the reg. prep. He asked me to call my insurance co. to see if I would be covered for observation and IV fluids during the prep.

I told him I am going to wear my hard cervical collar more often just to see if it helps symptoms, as I have two things going on. I still have the pressure on the brain stem from vertebral artery. If the collar helps, then maybe we can just do the fusion my orthopedic surgeon said I need. If it doesn't help completely, then a neurosurgeon needs to decompress the area of my lower cranial are a little to give the vertebral artery more room.

I also couldn't imagine getting sick on the prep.---(throwing up), as any kind of straining causing very intense pain to the right side of my head, then I see stars. There's more grinding at cervical/cranial area, and I lost 1/4 inch on my height in just three months.

Still trying to hang on to hope that there's still some compassionate medical professionals out there that actually have passion for helping patients. I really need to get the right medical help.

There's a LOT of diverticuli in large bowel, and the 5 mm one in duodeum. We need to get this colonoscopy done, not only due to the family history of cancer, but because my guts haven't been right for quite a long time. It's just something I've been dealing with.

Thanks for reading.

Maxine :0)

[janiedelite]

All I can say is "Wow!" I don't know how you keep it all together. I'm SO glad you have a PCP who realizes the seriousness of your various conditions. It might be helpful for your doc to write a brief explanation of why you need to be admitted for your prep... just a thought. I'm sure you're already on top of it, though!

Keep us posted, Janie

[Maxine]

Thanks Janie,

I'm glad my PCP took my BP and watched it fall. When he said 115 palp----then said it continued to fall at a pretty fast rate, I was glad he took it seriously. I told him my BP sometimes falls the minute I stand up, then other times it's delayed. When it's delayed it's worse, because it hits me so fast, and it's like a switch goes off. He said after a minute or so he couldn't get a reading.

My BP has been as low as 68/39, and this is not a tilt table reading.

I really don't know how I hold it together. Today is a bad day emotionally, as I just want my life back. I loved getting out and taking long walks, dancing, playing frisbee ect. I loved working, and loved the days when all of us at work blended like a great piece of music getting all the notes right, and at the end of the day everything worked out well-----------everyone having a good day. After a great day a good friend of mine and I would go this guy's house who lived in the old west end. That's a part of our city that's historic, and the homes are beautiful. He would get all the good linens out and treat us like queens.

We drank margaritas or imported beer and laughed until the late hours. His home was beautiful, and his personality was too. I miss the old days when I could socialize and not worry about feeling on the verge of collapse if I have on sip of alcohol.

What a mess things have been. When I was at the Cleveland Clinic, my husband and I pointed out to the swelling on my neck near my clavical. He came over to me and started poking and prodding again, then used the stethoscope to listen to my arteries in my neck, and abdomen. If that sounds OK, then I would have investigated further, but he didn't say anything more about it. You can visually see the swelling.

I suppose I have to wait for something to major to happen, but then no one here would know what to do anyway.

The ignorance is very disheartening, but at least my PCP is trying to help---------but we both realize my chances of being dismissed over and over again are still here, and there's days my hope fades.

Maxine :0)