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Guest Julia59

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Guest Julia59

I have an appointment at The Spine Institute at The Cleveland Clinic on Sept. 9th.

I'll be seeing Dr. Venesy. She is in Physical Medicine and Rehabilitation Staff Main Campus

Spine Institute Staff Main Campus

appointed: 1999

medical school: Wright State University School of Medicine Dayton, OH

specialty training: Internship - Mount Carmel Health System - East/West Columbus OH

Residency - The Ohio State University Hospitals Columbus OH

other education: B.A. - Ohio Wesleyan University Delaware OH

specialty interests: evaluation and management of neck and back pain; electromyography; management of occupational conditions and illnesses; rehabilitation of neuromuscular disorders.

Anyway, after talking on the phone with a couple of nurses that didn't seem to have much of a clue where to put me---i.e.---> neurology, Neurosurgery, spine center------ect. I ended up getting appointed to the spine center.

I was laying in Bed this morning and a rather rude nurse called me. I was trying to get my faculities after sleeping over 9 hours. Lately after not being able to sleep very well---I suddenly seem to sleep---too well. Depression has set in pretty heavily lately, and I don't want to get out of bed in the morning. I can usually snap out of it, but that last few days have been kind of rough----I just want to lay there and dream about another life----or just sleep and dream. Once i'm up it's not too bad, but i'm still not my old potsy self.

The numbness and weakness is progressing along with the fatigue. I thought I should finally go to the Cleveland Clinic. But after telling them all my health issues, they didn't seem to know where to put me, so they started with the Spine Institute. The nice nurse from yesterday's phone call said this doctor is also trained in neurology. Hopefully there will be a less invasive way to handle my neck issues.

I have been told that due to the mylopathy that I need a full cervical laminectomy.

I trust the NSG's diagnosis, but I want to see if there is some time to buy before I decide on surgery. It doesn't look good right now as typing this is even difficult.

I suppose i'm "functionally" depressed. The idea of a big invasive surgery like that is pretty scarey. I just don't feel like my present health status could handle over 6 hours of anesthesia. But at the same time my condition progresses at a scarey pace. Almost with every movement I feel the unsteadyness of my upper and lower spine. I can usually motivate myself and get a few things done, but now things seem to take forever as my limitations are increasing.

And of course this stupid wound from the minor surgery (cardiac loop recorder) still has not healed---almost a month now. It's doing better, but still hurts. Tomorrow i'll go for a reading as I had a couple of episodes----but i'm not sure if they were anything. The one on Saturday might show something as it was difficult to breathe.

Dr. Grubb's nurse practioner told me the Niaspan is not the drug of choice for POTS patients to raise HDL levels of cholesterol. She said it's a vasodilator----i'm guessing not too smart for POTS patients. So now I have to call my PCP again to tell her I can't take that drug. Meanwhile the NP in Dr. Grubb's office said the cerefolin might help raise the HDL.

I'm just disgusted, and fear that i'm going into another dead end.

Julie ---------- :P

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Dead ends are unfortunately things that come with the terotory. I hope that you can find and receive the best medical treatment neccessary. It it very hard to accept the things we cannot change, but we still must go on. Try to focus on the positive things in your life , youe may even want to try and write them down. This helps me sometimes.

I also look at old school pictures, or pictures if my kids when they were younger. Anything that will help get the bad news out of your mind a little bit. This will help you to releive some of your stress.

Always remember we are also here for you,

Rita s

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Julie, You look like you're doing everything right... checking out all of your options thoroughly and trying your very best. Hang in there... it's really hard when you're feeling so terrible to try and get the help you need and you've been doing a great job. I'm glad that your checking out non-surgical options, hopefully there will be something you can do that will help put off the surgery for a little bit. It's good you've gotten in for the 9th- make sure you take extra good care of yourself, you've really been through the ringer lately. Laura

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julie -

this is a bit delayed, but i just wanted to add my "good for you" to making the appointment at the clinic. while of course i hope it goes superbly, regardless it's an avenue that is worth going down to find out one way or the other. b/c otherwise you'll never know. i haven't been to the spine center but when i was at the urology institute a few weeks ago i was pleased with how smoothly things seemed to be run & how well i was treated by everyone from the parking attendant to the doc (and everyone in between).

i'll be honest that it hasn't been such smooth sailing with trying to set up an appt with a clinic-affiliated PCP i was referred to, but you can't win them all, eh?

i hope things go well at the appt & depending on when your appt is & how long, if you're needing to grab a bit to eat before heading back to toledo maybe we could even meet...i'm only a few minutes from the clinic & only have a short meeting at school that day. i know you won't know how you'll be energy-wise & the same goes for me so we could play it by ear & even decide the day of. feel free to PM or email me...

:) melissa

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  • 2 weeks later...
Guest Julia59

Oh my----i'm really behind Melissa.

I wanted to let you know I won't be going to The Cleveland Clinic until Oct. 7th now. Hopefully we can get together then. This is on a Friday.

Julie :0)

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