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Post by josh Oregon on Aug 29, 2009 12:55:09 GMT -6
Thanks...My surgery is going to be performed by Dr. McBride. He was trained by Dr. Fred Epstein at the mayo. I think he has done like 350 of these. He says its all he does? I think im in good hands. All request this active release technique.
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Post by beverly1996 on Mar 24, 2010 14:19:26 GMT -6
Hi, I am a 13 year survivor - Ependymoma C2-T4. Resection only; no chemo/radiation, Oct 8, 1996 (funny how some dates really stick in your brain!) Wired-up with titanium. In 1996 there were very few resources such as this on the web! Some of the older SCTA members may remember me, as I have dropped in and out of this website. I don't know how I can or should be a help or encouragement to you peeps, but know that I do pop in to check things out from time to time. Just recently had my "regular" Follow-up MRI - so I guess I'll hear back from the Doc on/about April 8th. My biggest concern at this time is what all that Gadollinum has been doing to me all these MRIs later.... It is great how this website has grown! You all should be proud! I am so amazed, when I think back to Skye and Van and Robert and Linda and Ellie....Thank you all! Yes, I still feel my "girdle" starting from my ribcage down, and yes, my legs are still "noisy" but it's been my "normal" for many blessed years and so I am finally used to this as "me". My feet still hate being cold and feel like they were immersed in blocks of dry ice and I have never gotten a pedicure because I don't like my feet being touched! Massage Therapy - oh yes, I do have my issues, but massage is good and so is Yoga. Gentle yoga (restorative yoga) is great because you can be in a supported position. If you can do these for yourself, it may be helpful. Yes, PT right after surgery was painful, but I wanted my life to go back to as "normal" as possible, so it was a means to do that. I had such limited range of motion with my arms and holding up my head- ugh! If you can get the PT after surgery, do so. Good luck to everyone going through this journey! Bev Western PA
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Post by Linda51 on Mar 24, 2010 21:35:55 GMT -6
Bev, were you zipperneck? If so, I have thought of you often. Congrats on 13 years. I hope you get good news on the 8th. Keep us posted and don't be a stranger! ~Linda
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Post by redaquadeb on Aug 30, 2011 8:37:25 GMT -6
Hey, this is Shelly. I've never posted to these ?blogs so I dont know if I'm doing it right - but anyway ... I kept it short and to the largest points. I think when I actually wrote my story out a few years ago (as Linda asked), it turned into pages. Pre -surgery - I had migraines since I was about 17 y/o. I took many, many meds and had a stressful job and I'm always in school, so the docs striked it off as stress and piled on the pills. I went to a neurosurgeon who was in the trials of Imitrex which then was a god send. I had migraines about 6-7 days a week w/ neck pain which wrecked alot of jobs and relationships. Most of my pain was unrelieved w/ meds, I usually threw up and went back at it. sad. The imitrex was seriously expensive.. so I didnt win. Diagnosis: I've seen orthos, neuros, generals, you name it. I am a nurse so I have access to alot of opinions and Md's. As I said, they blamed it to stress and wouldn't order tests, so I finally asked my neurosurgeon for an MRI of my neck. He ordered one for my head and it was fine. I asked again for my neck. My neck was so stiff I couldnt hardly move it. After alot of negotiation... I got my MRI Cspine 7/2004. I got my diagnosis 7/2004 30 minutes later. I went to Shands 30 days later. My neuro said that it will continue to grow and will cause neuro deficit. He said it must come out and it will. It was excised 8/24/04 with the usual cysts at both ends. Since it was in my neck, he did a laminectomy from c3-c6. I had terrible spams afterwards so of course you cant push up on a bed cause you cant use your arms. My right leg was completely unstable and my knee wouldnt bend. Once I came home, I used a walker to go to outpatient rehab and learn to stand w/out the walker, walk with out it and lean back with my eyes closed. i did stroke rehab. I have loss of sensation in my right leg, so I couldnt walk at first, I kind of would swing my leg. Then one day, my knee started bending again. Symptoms: Neurologically I was 100%. Migraines debilitated my life for 20 years. I had a stiff neck daily. I had absolutely no physical issues going in to surgery, which my neuro said would be great since those symptoms that already happened, he couldnt fix. It's been a long and heart wrenching ordeal. There are things that I cant do now, but at least I'm alive and healed. I followed up with my neuro for 5 years with twice a year MRI's (which I hate) and he released me in May 09. I also follow up with my ortho (friend of mine) to continually reassure me that everything is ok. I am thankful for the outcome that I did have and will praise God continually for this. I have waited 5 years to discuss, (to strangers) so I hope this helps someone else. I will be more than happy to discuss any details or questions anyone has via posts, emails, phone calls, whatever. Thanks Shelly
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Post by redaquadeb on Aug 30, 2011 8:45:59 GMT -6
Hi, Shelly. I'm really glad that you were able to be treated and that you are, more than not, okay... I have some questions that I'd like to pose to you, and would be very grateful for any insights, as right now, I am totally lost and confused. My name is Deb; I'm 51 and was just diagnosed with an intramedullary Ependymoma at c2, just at or below my brain stem. I have no symptons, EXCEPT, like you, I have suffered from debiliating migraines for the past 24 years. To date, I have yet to find a nuerosugeon who will work with me, let alone give me any definative answers. I'm told that the MRIs show a slowly growing ependymoma, but that they can only be 100% sure of the diagnosis with a biopsy.. But, that's too risky becuase it's smack in the middle of my spinal cord... So, are your migraines "cured?" And, can you please tell me what you can't do now? Lastly, did the docs diagnose you based on MRIs alone, or, did they do any other tests and/or a biopsy?
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Post by imnotmaggie on Aug 30, 2011 23:45:41 GMT -6
Redequadeb, my ependymoma was 6.2 cm long and just over 3 cm in diameter and was C3-T1. My initial symptom was numbness in my left pinky & ring finger and then followed by pain in my neck that was worse at night. I've suffered migraines as long as I can remember but they always seemed to be triggered by allergies and under control after allergy shots so I'm not sure if they could have been related to the tumor. I went through several months of physical therapy I had an MRI with contrast that showed the tumor. I was immediately referred to a NS and told surgery was the only option. The NS also said he wouldn't know for certain if it was an ependymoma or astrocytoma until he opened me up. He outlined the risks of surgery which included paralysis and dependency on a respirator. I had no other neurologic deficits going into the surgery and refused to believe the worst would happen.
Surgery lasted between 6 & 7 hours, two days in ICU, three days in the hospital, two months inpatient physical therapy & 2 additional surgeries to clean up damage from an infection. I have lost a lot of feeling below the waist predominately on my left side (my daughter finds it funny that I have numb butt), I have lost some function in my intestines, I take gabapentin for nerve pain, and my neck hurts but it's tolerable. I walk without the use of any assistive device but tire easily and have no shame being under 40 (for a little while longer) and using the electric cart @ the grocery store. My incision was about 8" long (my daughter was curious so we pulled out the tape measure) and makes great conversation when people see it for the first time.
Were your MRI with or without contrast? Have you researched the doctors to see what kind of experience they have with spinal cord tumors? Have you thought about contacting a NS outside of your home area that may have more experience? I was fortunate to find a great surgeon but it all happened so fast and I knew nothing about these tumors or what questions I should ask. This forum has a wealth of knowledge and a thread with names of many doctors that may be a good resource for you.
I wish you all the best. Margaret, ependymoma C3-T1, 2007
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Post by Kc on Dec 19, 2012 11:21:48 GMT -6
Is anyone still around? I am 36 It's been a year on jan 31 that I had a partial resection of a intramedullary ependymoma. It had a large cystic portion. In total the tumour was 8.3 cm and 2.2 cm diameter at the brainstem to c2. Most was removed (still 0.4 by 1 cm). I also have a drain in place for the cyst. It was too risky to "scrape around the cord to try and get it all" Apparently the drain has a low failure rate, but I worry about it. My symptoms have immensely improved since the surgery, but I still have weakness and a lot of tension when I am stressed in my neck which affects my range or motion etc. I get numbness in different areas almost like a razor burn feeling and some pins and needles. I am hoping that these symptoms can continue to improve. I am on 1600 of gabapentin daily which helps.
My initial symptoms were numbness in both arms and legs, which at first was positional and got worse. As stress increased, I got pins and needle feelings and burning pain. Hindsight there were other symptom,s which was long time weakness and tension in the neck and weird feeling in my right big toe at night.
I have good days and bad. I worry about requiring surgery for the tumour again. It is slow growing, but I am still young. Also, I know the procedure is much less serious, but I worry about the drain failing too. I understand why they didn't get it all and am grateful for being fully functional, but worry about the future. I hope and pray for leaps and bounds of medical advances. My surgeon feels confident that it will grow but I don't know if it will be come an issue. I would love to hear others experiences from one MRI to another if you have an remaining.
I my first MRI showed no growth!
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Post by yfcq on Mar 24, 2019 3:22:50 GMT -6
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Post by mksxcs on Apr 6, 2019 15:57:57 GMT -6
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Post by Samm1 on Sept 23, 2020 23:02:13 GMT -6
Hello everyone, I was just wondering if any of you are still on this site? I am scheduled for surgery in about two weeks and wanted to see how you all are doing now that you are so far out from your surgeries?
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