Maxine Posted July 14, 2009 Report Share Posted July 14, 2009 Today I had to pospone the virtual colonoscopy until Friday. I have a headache, the same one I've been dealing with. I'm guessing this is caused by the instability in my neck. Along with the headache I'm weak and very worn out.My geneticist has been trying to help me, and he referred me to an orthopedic surgeon who has a good understanding of EDS related to spine and cervical/cranial instability. However, I have the enlarged vertebral artery causing pressure on the brain stem also, and this requires a neurosurgeon's opinion. Most neurosurgeons are very dismissive about this, and have a poor understanding of EDS. My guess is an enlarged vertebral artery, poor vascular tone, and cervical/cranial instability is a bad combination.Yesterday I went to Cleveland Clinic, and for some reason after receiving my records I'm being triaged for neuromuscular. I saw a neurologist who specializes in this. He suggested my pain is from "migraine". NO, it's not----------I Do NOT have a history with this. I told him it's localized to the back of my head, and travels to my right temple.After doing a partial neuro exam he scheduled me for an EMG, then wanted to see me in two months. He also scheduled me to see a spine specialist.Anyway, I'm not optimistic for any help from CC. Today my headache is here again, after the prodding and poking the neurologist did around my neck. I told him not to, but he kept going back to this area, and tugging on my shoulders also.It seems the prep for virtual colonoscopy is more intense. Not only do I have to take citric of magnesia, but also a half gallon of trilyte. If it doesn't agree with me I can't imagine throwing up at this time. Not with the headaches I'm having.Also, I'm wondering what it will do with my OI/POTS and heart rate. Anyone with experiences with "virtual colonoscopy", and trilyte prep?I'm very depressed with all of this going on, and terrified on what thery're going to see up there in my colon.Maxine :0) Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted July 14, 2009 Report Share Posted July 14, 2009 I'm afraid I dont realy have any words of wisdom.. other then to say I understand as far as the throwing up goes with neck isues... I avoided a regular colonoscopy for over a yr... b/c of the prep.. and how it affects things.. the colonoscopy itself isnt bad...BUUUUUUTTTTTT I;ve never had the virutal colonoscopy...I really hope that you can get some help at the CC.. It bites to have to deal with so much.....thinking of you girlie....Big hugs! Quote Link to comment Share on other sites More sharing options...
skyblu Posted July 15, 2009 Report Share Posted July 15, 2009 Maxine,I feel for you...I need to have a colonoscopy as wlll and keep putting it off. I tried to do one last yeer and didn't even make it to the prep. I was so weak from just the liquid fast . I found a place here that does the Virtual Colonoscopy...they agreed I can do the regular colonoscopy prep but...there was contrast thing I'd have to drink as well. Anyhow...I wish they'd come up with less invasive test that didn't require fasting or a prep.. ...or a scope. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted July 15, 2009 Report Share Posted July 15, 2009 I'm sorry - that sounds terrible. Could you ask your doc to prescribe some zofran for the prep? I had to take zofran for my prep to keep everything down. Quote Link to comment Share on other sites More sharing options...
Maxine Posted July 15, 2009 Author Report Share Posted July 15, 2009 Thanks so much----- I can't tolerate anti nausea meds. they make me want to climb out of my skin, and hallucinate.I want to get this done, but still terrafied on what they'll find.Maxine :0) Quote Link to comment Share on other sites More sharing options...
gertie Posted July 16, 2009 Report Share Posted July 16, 2009 Ditto what skyblu said. I've tried 3 CS so far haven't made it to start the prep. I collapse from the fasting. I was so afraid I would have a reaction to the prep I tried a sample of it to see how I would react. In fact I tried about 3 different preps. I was told Miralax was the easiest prep but I had a horrible headache from it. I can't take mag citrate because of seizures & it causes my HR to drop. My DIL used the movie prep & had no problem at all. Miralax is OTC & you can mix it with lemonade or ginger ale & it doesn't taste bad. Your doc will probably work with you on the prep. I haven't had a VC but I know how stressful it must be for you. My suggestion is try a small amount of the preps before your appointment & see how you react. That will relieve a lot of your stress. Good luck! Quote Link to comment Share on other sites More sharing options...
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