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

Posted by bonnieb81 @bonnieb81, Jun 23 4:30am

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.

@bonnieb81 Wow, this has been quite a wait. No wonder you are concerned. You state you are frustrated working with TX Oncology – where are you located? Perhaps someone in the group can suggest another physician or group to see you. Are you still your husband's caregiver as well?
Sue

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Hi @bonnieb81, I'm troubled to hear that you are still not getting resolution and that your health issues are not being addressed or explained to you in a way that is understandable. IF no further treatment is necessary, this should be explained clearly and in a way that gives confidence that treatment is complete. I reviewed your other posts in these discussions:
https://connect.mayoclinic.org/discussion/high-risk-for-colon-cancer-due-to-pre-cancerous-adenoma-age-or-both/
https://connect.mayoclinic.org/discussion/living-with-colorectal-cancer-meet-others-come-say-hi/?pg=10#comment-356842

There are several things I would like to understand about your situation. If I understand correctly, the first scan in Aug 2019 showed “concern for malignancy” and the second scan Feb 2020 “too much stool in colon to see mass.” As a result, it is still unclear whether there is a mass or not. Is this correct? That would concern me too. Has it been suggested to have another scan. If not, what does your doctor suggest as a next step?

I strongly encourage you to contact Mayo Clinic in Jacksonville. Here's the number: http://mayocl.in/1mtmR63
You can self-refer and do not require a doctor for a referral.

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@sueinmn

@bonnieb81 Wow, this has been quite a wait. No wonder you are concerned. You state you are frustrated working with TX Oncology – where are you located? Perhaps someone in the group can suggest another physician or group to see you. Are you still your husband's caregiver as well?
Sue

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Yes, thank you I’m still my husbands caregiver. I’m in severe pain in my back (spine w/new mri showing major SEL Spinal Epidural Lipomatosis and a nodule on Adrenal which may also be Lipomatosis future testing..plus Lipomatosis in colon I was verbally told by Radiologist but not recognized by surgeons. I tried Mayo in Jacksonville Fl. Again but they won’t give me an appt. any help on how to get a Dr. Specializing in Lipomatosis as it’s thruout my body. MRI’s for 13 yrs verifies it. But not acknowledged. I’m at a loss! 82 and losing ability to walk without extreme pain. I know this is not the correct venue for spine, adrenal etc. though I think it’s all inclusive with colon and colorectal issues. I’m very depressed and seriously ill.

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@bonnieb81

Yes, thank you I’m still my husbands caregiver. I’m in severe pain in my back (spine w/new mri showing major SEL Spinal Epidural Lipomatosis and a nodule on Adrenal which may also be Lipomatosis future testing..plus Lipomatosis in colon I was verbally told by Radiologist but not recognized by surgeons. I tried Mayo in Jacksonville Fl. Again but they won’t give me an appt. any help on how to get a Dr. Specializing in Lipomatosis as it’s thruout my body. MRI’s for 13 yrs verifies it. But not acknowledged. I’m at a loss! 82 and losing ability to walk without extreme pain. I know this is not the correct venue for spine, adrenal etc. though I think it’s all inclusive with colon and colorectal issues. I’m very depressed and seriously ill.

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@bonnieb81, I modified the title of this discussion and added it to the Spine Health group as well as the Colorectal Cancer group so that it will appear in both. With the results of the MRI, what next steps has your doctor suggested?

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Sending prayers for you. I pray you have someone close to you that can help you and talk with you.

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@colleenyoung

@bonnieb81, I modified the title of this discussion and added it to the Spine Health group as well as the Colorectal Cancer group so that it will appear in both. With the results of the MRI, what next steps has your doctor suggested?

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Thank you again.. I went to a group of general surgeons ref. By my primary.. he didn’t give me any help ref. Me to gastroenterologist. But I changed primaries back to UTSW and ref. To another Colon rectal Surgeon… ordered another Catscan which literally showed nothing if previous Catscan… now I’m challenging it with another in person visit w/this surgeon.i don’t think lipomatosis is being targeted as I was told by 3 spine surgeons at UTSW they do not do surgery on Lipomatosis! Same language used by my old surgeon re:original tests 2018-2019-2020! He said “ I do not do surgery on lipomatosis! He agreed to ref. Me to Mayo in Jacksonville, but did not. I’m seeking help from any lipomatosis specialist, one in Houston tx I’ve sent an email to. I’ve dice had Mri of Spine again..per pain management now have a ‘Adrenal nodule ‘ in left kidney. Needing more testing! As I mentioned my 90 yr old husband declining w/Lewy Bidy, CHF, Kidney Disease, Hypotension! I’m his only caregiver. So many issues… no closure. With covid raging still, our plans to move to Florida near 2 adult daughters for help and bear Mayo, on hold. I would so live to get us both to Mayo! We have both rare, diseases.. not the norm. Thank you for any suggestions. Time is not on our side!

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Well, here I am again! I know that what I have had diagnosed is very rare, not one but 2 serrated adenoma sin my appendeceal orifice (appendix) and thickening in cecum! So I went to yet another surgeon at UTSW,Dallas,&anither catscan,this time absolutely nothing of previous colonoscopies,and 3cstscans showed anything!Surgeon says polyps removed,I know not true as I have reports and I know they were biopsies only.Now he wants yet a third colonoscopy in this 18 mi period.to check on thickness in cecum convening of ‘malignancy! BUT,the colonoscopy never discovered thickness it was the 2nd catscan!i still don’t have closure if I have potential of colon cancer or what the thickness in cecum is? (Radiologist stated concerning malignancy!) I tried to get appt at Mayo but they will NOT see me! Originally said they could make appt ‘if’ I ‘HAD’ malignancy! I can’t find out! Now what! It’s my understanding that these sessile poylp s can only be removed by resection of colon. Not that I want any surgery but I need to know! I’m stressing out! Age 82.6 yrs old…. 90 yr old husband!! Thank you anyone!

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@bonnieb81

Well, here I am again! I know that what I have had diagnosed is very rare, not one but 2 serrated adenoma sin my appendeceal orifice (appendix) and thickening in cecum! So I went to yet another surgeon at UTSW,Dallas,&anither catscan,this time absolutely nothing of previous colonoscopies,and 3cstscans showed anything!Surgeon says polyps removed,I know not true as I have reports and I know they were biopsies only.Now he wants yet a third colonoscopy in this 18 mi period.to check on thickness in cecum convening of ‘malignancy! BUT,the colonoscopy never discovered thickness it was the 2nd catscan!i still don’t have closure if I have potential of colon cancer or what the thickness in cecum is? (Radiologist stated concerning malignancy!) I tried to get appt at Mayo but they will NOT see me! Originally said they could make appt ‘if’ I ‘HAD’ malignancy! I can’t find out! Now what! It’s my understanding that these sessile poylp s can only be removed by resection of colon. Not that I want any surgery but I need to know! I’m stressing out! Age 82.6 yrs old…. 90 yr old husband!! Thank you anyone!

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@bonnieb81 You certainly have been given a lot of mixed messages. How frustrating that must be. I certainly admire your persistence in seeking some answers. Keep advocating for yourself.

Do you have help with your husband's care or does all of the responsibility rest with you?

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I have no help with my husband but I’m managing with him, he’s doing better than me. I must get some clarity on whether I have a malignancy in colon. I’ve switched to UTSW..colorectal Surgeon Who is just following path of last surgeon who wrote me off basically, his last words to me (last surgeon of 8 yrs. and prior surgeries said ) “ oh! We’re all going there sooner or later!” A religious Hispanic Surgeon who builds missions in Mexico! I emphasize the ‘religious attitude!” Sorry, I’m religious too! But..at 82.6 age and otherwise healthy appearing 60 ish (perhaps) I don’t want to play Russian Roulette with my life!! I just want to know the precancerous sissile polyps in my appendeceal orifice and ‘thickening in cecum concerning of malignancy per my catscan of 2019 revealed) is NOT a malignancy! What must I do???!! I can and I am ready to go to Mayo InJacksonville, Fla. near where my grown daughters reside. (Can help me) but I’ve tried 3X.. if you can help me I would be so greatful!! Thanks so much I pray for help!

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@bonnieb81

I have no help with my husband but I’m managing with him, he’s doing better than me. I must get some clarity on whether I have a malignancy in colon. I’ve switched to UTSW..colorectal Surgeon Who is just following path of last surgeon who wrote me off basically, his last words to me (last surgeon of 8 yrs. and prior surgeries said ) “ oh! We’re all going there sooner or later!” A religious Hispanic Surgeon who builds missions in Mexico! I emphasize the ‘religious attitude!” Sorry, I’m religious too! But..at 82.6 age and otherwise healthy appearing 60 ish (perhaps) I don’t want to play Russian Roulette with my life!! I just want to know the precancerous sissile polyps in my appendeceal orifice and ‘thickening in cecum concerning of malignancy per my catscan of 2019 revealed) is NOT a malignancy! What must I do???!! I can and I am ready to go to Mayo InJacksonville, Fla. near where my grown daughters reside. (Can help me) but I’ve tried 3X.. if you can help me I would be so greatful!! Thanks so much I pray for help!

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You need to get/TELL your current doctor you WANT a referral to Mayo done NOW. That’s the only way you will likely get an appt there is what I’m thinking. Having said that, not sure of how soon that would be. But you need to stand firm and advocate for what you want, otherwise sounds like you aren’t getting anyone else to do it for you. Bottom line. Be your own advocate, even if you have to stomp your foot!

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@wisco50

You need to get/TELL your current doctor you WANT a referral to Mayo done NOW. That’s the only way you will likely get an appt there is what I’m thinking. Having said that, not sure of how soon that would be. But you need to stand firm and advocate for what you want, otherwise sounds like you aren’t getting anyone else to do it for you. Bottom line. Be your own advocate, even if you have to stomp your foot!

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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”!!

Liked by bustrbrwn22

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@bonnieb81

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”!!

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Please keep us posted

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@wisco50

You need to get/TELL your current doctor you WANT a referral to Mayo done NOW. That’s the only way you will likely get an appt there is what I’m thinking. Having said that, not sure of how soon that would be. But you need to stand firm and advocate for what you want, otherwise sounds like you aren’t getting anyone else to do it for you. Bottom line. Be your own advocate, even if you have to stomp your foot!

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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!

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

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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!!

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