Unresolved Colon/Appendix Issues and Spinal Epidural Lipomatosis (SEL)

Posted by bonnieb81 @bonnieb81, Jun 23, 2020

In 2018 (Nov) I had colonoscopy showing 2 polyps one in my appendix or appendices orifice(not sure.. it was unclear to me) and no follow up by surgeon, so I pursued... he orders another Catscan which showed ‘thickening in cecum ... and mass concerning if malignancy... still no follow up... I pursued, so then yet another colonoscopy 12/24/2019... nothing stated of importance to me though after colonoscopy the surgeon stated by my bedside after procedure that I would need appendix removed and resection of colon... my friend was in room hearing this... still nothing came of it.. I got the reports only to find ‘diverticulitis! Never had that diagnosis and even that was inconclusive I believe! Now in 2/2020 he ordered another Catscan only report stated “too much stool in colon to see mass”... I’m still in the dark and the surgeon tells me all my pain, fecal incontinance... etc. is common... “he stated all the people in waiting room has fecal incontinance probably” making light of my situation I told him I must have closure... he’s done nothing! I’ve been dealing with manager of Tx oncology and still not getting cooperation for expedient second opinion.

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bonnieb81 | @bonnieb81 | Sep 8, 2020

In reply to @wisco50 "You need to get/TELL your current doctor you WANT a referral to Mayo done NOW. That’s..." + (show)

That’s what I’ve tried to do. This new surgeon won’t even refer me to the Cancer Center at UTSW making me go thru my ‘new’ primary! Who doesn’t seem to get the whole picture! I’m at a loss.. I’ve called Mayo 3X, and they say they will only see me “if I have cancer”!!

bustrbrwn22 | @bustrbrwn22 | Sep 8, 2020

In reply to @bonnieb81 "That’s what I’ve tried to do. This new surgeon won’t even refer me to the Cancer..." + (show)

Please keep us posted

bonnieb81 | @bonnieb81 | Sep 12, 2020

In reply to @wisco50 "You need to get/TELL your current doctor you WANT a referral to Mayo done NOW. That’s..." + (show)

I just tried with new surgeon and after new catscan which revealed -0- he wants yet another colonoscopy for biopsy on “ thickening in cecum concerning of malignancy that catscan didn’t even reveal!!! I told him that 3 colonoscopies and 3 catscans in 12/18 mo. Is enough!! No more!! And the “ thickening in cecum was found by catscan NOT colonoscopy and 2 precancerous polyps in appendeceal orifice are still there! All such inconsistent findings. I wanted at least to be referred to uTSW cancer center since mayo won’t take me for appt!! Unless I ‘have’ diagnosis if cancer! I’m so stressed!

bustrbrwn22 | @bustrbrwn22 | Sep 12, 2020

I am so sorry for this bull you are going through. I wish I could offer help

bonnieb81 | @bonnieb81 | Sep 12, 2020

Thank you for your reply. I’m at my wits end!! I think the reason I can’t get into Mayo may be due to Covid. But I wish they could give me at least some hope!!

bonnieb81 | @bonnieb81 | Sep 25, 2020

In reply to @bustrbrwn22 "I am so sorry for this bull you are going through. I wish I could offer..." + (show)

Thank you for your reply. I just sent my records and 8 pages to Exec. VP of medical affairs to UTSW.. trying to get help in referral to Cancer Clinic. The last surgeon at UTSW insists on another Colonoscopy (my response NO!) after 2 in 18 mo and 3 Catscans! I know the test/screening for Colon Cancee is not another Colonoscopy! Thanks for your reply, I appreciate ‘plain talking!’ lol

bustrbrwn22 | @bustrbrwn22 | Sep 25, 2020

In reply to @bonnieb81 "Thank you for your reply. I just sent my records and 8 pages to Exec. VP..." + (show)

@bonnieb81 another colonoscopy? Ridiculous!

bonnieb81 | @bonnieb81 | Dec 31, 2020

In reply to @bustrbrwn22 "@bonnieb81 another colonoscopy? Ridiculous!" + (show)

Here I am again, 12/31/20.. yes a third colonoscopy, new surgeon in Tex., ready to schedule surgery to remove my appendix with 2 precancerous sessile serrated polyps in appendeceal orifice. As I mentioned a few times a “mass concerning of malignancy “ was found 0812019..subsequent catscans did not show mass..intubation to see polyps done at colonoscopy, but not totally conclusive? I’m wondering if removal of appendix includes orifice, has to ??? Since that’s where polyps are?? So more later. Thank you

Teresa, Volunteer Mentor | @hopeful33250 | Dec 31, 2020

In reply to @bonnieb81 "Here I am again, 12/31/20.. yes a third colonoscopy, new surgeon in Tex., ready to schedule..." + (show)

@bonnieb81 As I've said before I really admire your persistence!

If I were you, I would ask the surgeon those questions that you posted in the last two sentences. If you cannot talk with him personally, he should respond to a message on the patient portal.

Will you let me know when you have a surgery date?

Sundance(RB) | @sundance6 | Dec 31, 2020

In reply to @bonnieb81 "Here I am again, 12/31/20.. yes a third colonoscopy, new surgeon in Tex., ready to schedule..." + (show)

Bonnie, I feel for You! I have learned in the last 21 years to GET IN THEIR FACE!! February 1999 I was diagnoised with Stage IV colon cancer in the Sigmoid section of my colon. No question I had it removed ASAP. Long story short they could not get it all! Had chemo that almost killed me!
After that I have had nuermorus other hosiptalistions! I have learned through all of this to STAND UP FOR YOURSELF AND SAY YOU WANT A BETTER ANSWER!
As a survivor of 21 years I have done a fair amount of research on colon cancer! I have never heard of colon cancer being on the appendix except with Stage IV! I would really ask them what they are talking about!
In the last two and a half between my current fight with Lyme disease and my wife having a stroke I have FIRED 6 doctors for not giving me the stright info! I do it to their FACE!
Social Comment; We as Baby Bommers, were taught not to questions doctors! My comment now is they are not like the doctors we grew up with! Medicine has Changed, and not for the better! I have had old time doctors tell me that also!
Blessings from The Land of Enchantment!
Sundance(RB)