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Old 04-29-2015, 09:22 PM #11
Telvaker Telvaker is offline
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I cancelled my chiropractor who was going to internally manipulate my tailbone. How are you doing tomato Girl? Are you feeling good? When you saw dr. F did you take a current MRI of your sacrum? My MRI is 16 months old and he doesn't like using an MRN which I had done 6 months ago. It stinks cuz now I have to pay for another MRI. I don't understand why the MRN couldn't be used. My doctor and the doctors at Johns Hopkins said this imaging gave a far clearer picture of my cysts. I'm so frustrated. He's the expert in this field but this part doesn't make sense to me.
I made an appointment for June 3rd in Dallas. I just don't want to wait the 5 months it will take for him to review my imaging. Do you recall what he looks at on the imaging what makes you a candidate for surgery? How long did you have to stay in Dallas? I don't know what I'll do if I am not a candidate for surgery. I'm so beat, it's hard to stay positive when I see everyone going about life and they're happy. It's been so long since I've felt genuine happiness. Sorry to be so negative just in a bad place tonight.
Any advice dealing with dr. F or dealing with these cysts is appreciated.
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Old 04-29-2015, 11:48 PM #12
Bridges Bridges is offline
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I fully understand your frustration, having been there, so let me assure you that whatever it takes to get your current MRI in front of the eyes of Dr. Feigenbaum, do it! I "lost" five years of my life before he restored my health, so as you may expect I am somewhat biased. However, he has a proven track record, and you must put forth the effort to not only obtain a proper diagnosis but to follow through with the suggestions he makes for recovery.
"Bridges"
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Old 04-30-2015, 07:55 PM #13
Telvaker Telvaker is offline
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I emailed my doctor today requesting an order for a new MRI. I know she doesn't agree with his request as she feels the ones I have should be more than sufficient. I told her I already booked my flight and need to have it done. It's my life and I have a right to get help from whomever I feel I need to. I certainly can't get them to admit my cysts might be my problem. Why is that, does anyone know? What would be the point of doctors not acknowledging these cysts could affect a certain percentage of people?
I am super nervous about my appointment. But, I'm going cuz I can't quit trying to get better
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Old 05-07-2015, 07:30 PM #14
Telvaker Telvaker is offline
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So did dr. F review your MRI done with 3t high resolution and did he find that sufficient to give an opinion as to whether you were a surgical candidate or not?

Bridges- do you know if this type of imaging is acceptable? I'm scheduled for an MRI in the upcoming week but 6 months ago I had the MRI with 3t high resolution but didn't think it would be acceptable
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Old 05-13-2015, 12:51 AM #15
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Sorry for the delay in response... I do not know what 3T high resolution is... my MRI's were done with contrast. Ask Dr. Feigenbaum what he requires. Now that you have found a medical practitioner that has the expertise to properly address your condition, do whatever he suggests, so that you can once again enjoy a productive life!
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Old 05-17-2015, 08:48 PM #16
Telvaker Telvaker is offline
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I had an MRI this past Tuesday and have an appointment in Dallas on June 4th. It's hard for me to trust doctors. I've been trying to get answers for over 2 years and it's just not that, it's a lack of guidance from doctors. I understand if they can't figure it out but give some advice get other physicians involved don't just let me walk out the door in tears.
It's going to be hard for me to trust what he says but I will be open to it.
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Old 05-17-2015, 08:58 PM #17
littlelam5 littlelam5 is offline
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Bridges, I am new to this and TCD and would like to get into contact with you to discuss the surgery you had in 2010. I have tried PM and emailing you but it looks like I do not have access to do such activities.
Elaine
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Old 05-19-2015, 09:51 PM #18
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littlelam5,
I sent a PM (private message) but have received no response. I am happy to discuss my successful surgical outcome with anyone. You can also contact me through the Tarlov Cyst Disease Foundation website.
David (Bridges)
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Old 06-04-2015, 02:23 PM #19
Tomatogirl Tomatogirl is offline
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Telvaker, how did your appointment go? Did you get some answers?

My recovery is going okay. No surprises so far, and I am very happy for that. Was warned to take it slow and that it would be long. Thanks for asking.

Wished I had seen your post on MRIs earlier. "3T" high resolution refers to the power of the MRI machine, 3T means 3 Tesla. Older or cheaper MRI machines are in the 1-1.5 Tesla range and the image quality is not as good.

A good contrast will highlight the cysts better, and with 3T MRIs you get the best images. Since Tarlov cysts can be small or hide behind each other, it helps to get the best imaging.
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Old 06-06-2015, 07:54 AM #20
Telvaker Telvaker is offline
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i called his office prior because my 3T MRI was the most current and then i woudl not need a new one. His office, surprisingly, said no to the 3T MRI. I think whoever I talked to was confused. I had a current MRI using the 3T but there were added frequences for the MRN (neurography) portion. Anyway, I got an updated MRI before I left. The appointment went OK. I felt he was a little "flip" about some things. I would imagine because he deals with this stuff daily. He said I was a candidate for surgery and they would get the paperwork going for that. I was confused on some portions of the questions he asked. He asked if I had upper back aches, neck aches, sore throat, cough, etc. I said no only to call back when I got home and tell him yes, I had all those i guess I was just a little nervous and this was my new normal. His nurse told me that these would not be symptoms from the cysts??? i was shocked and didn't say anything but then why would he ask me if i had those symptoms. I of course, went to the foundation and found that neck pain is a symptom. I am somewhat confused and stressed
the neck pain and pain between my shoulders & into my upper arms is horrible today which is scary because this has escalated quite quickly. Did you have upper body issues?
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