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Post by Dawn on Nov 9, 2014 10:08:11 GMT -6
First I would like to say how sorry I am that you, Crowning, and your husband have had a bad outcome. I can only imagine how different your lives are now after surgery. I do appreciate hearing your story as it makes me more aware of how well I am functioning and that watching and waiting can be the right decision. Of course the NS tell me of the risks associated with surgery and I suppose no one thinks it will happen to them. I wish you both only the best and thank you for your story and the encouragement it has given me in this watching and waiting stage.
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Post by Tamera on Mar 30, 2015 14:25:30 GMT -6
Hi Dawn, My husband has C7 Ependymoma and has surgery scheduled with NS Dr. Clarke at Mayo. He went to Johns Hopkins for 1st opinion (not Dr Jallo), and the NS there said wait and watch. But our understanding is if one waits and loses function before surgery, you won't get it back after surgery. Second opinion at Mayo said it needs to come out before more damage. Dr Clarke is seemingly qualified and does ependymoma resections. She also practiced at Johns Hopkins. We just feel like we are between a rock and a hard place. In any case, surgery is scheduled for next month. If you feel comfortable saying, who was your Mayo Dr.? Is there anything new or helpful you learned at MD Anderson that would be helpful for us to know?
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Post by samuridude on Mar 31, 2015 6:57:40 GMT -6
"But our understanding is if one waits and loses function before surgery, you won't get it back after surgery."
That statement is full tilt on my BS meter. In my case anyway, as everyone is not built the same. I was in very bad shape prior to surgery and post surgery. As for function and mobility almost 2 years post I'm at 90%, but pain is another story. I have lots of that. Their are so many factors to consider, age, physical fitness, mental health, etc-etc.
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Post by Tamera on Mar 31, 2015 12:23:19 GMT -6
Thanks Samuridude. Good to know you have nearly full function and mobility. Sorry about your pain, though. This is all very new to us, so we've been trying to research and educate ourselves as much as possible. And then there is the info provided by the neurosurgeons. My husband is an active, sharp 66, but not someone who has previously gone to the gym or worked out (is doing that now however). He has bearable pain in arms/hands and some numbness, some numbness in one leg. Some symptoms come/go and are mild to moderate pain level. He says he can live with the symptoms he has now...especially if pain and side effects of surgery would cause him to feel worse than now. One doctor says wait, one doctor says get the tumor out now. It's a relatively small tumor (1.0 cm)at C7, but has syrinx extending from C4 - T3. One question in my husband's mind is "if wait, then how long?" He just doesn't want permanent nerve damage before surgery. It's a lot to weigh. Reading some of the issues people have post-surgery sounds downright frightening, and frankly worse than what he is dealing with currently. His NS is also suggesting fusion surgery two discs above and two below surgery site to prevent future head drop (or I think some call it head forward problem). The suggestion is to also have it during the resection surgery. Just wondering if you had fusion surgery, or if not, have you had the subsequent head forward problem.
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Post by samuridude on Apr 1, 2015 7:10:52 GMT -6
"Just wondering if you had fusion surgery, or if not, have you had the subsequent head forward problem."
Right after the surgery my NS was explaining in 2 years I would need a plate installed at C7-T1 because I was going to have head forward problem. It's 2 years and I don't have any issues with that at all. About 4-5 months post it did relieve a lot of pain to drop my chin a lot, but that went away. I did and have been doing a lot of back and neck muscle exercises, so I'm assuming that saved me from that. In other posts I have written, I had to checked myself out of physical therapy weeks early. They weren't working me hard enough. BTW I'm 55 and in excellent physical condition both before and after surgery. I didn't have a choice because when they found the tumor it was determined life threatening. If I would of known years sooner, I would of had the surgery ASAP. I thank God every day for the 2nd chance. Read some of my earlier post.
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Post by Tamera on Apr 1, 2015 20:09:57 GMT -6
I will definitely look up your earlier posts. Thanks for the feedback!
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Post by dawn on May 29, 2015 13:14:57 GMT -6
Tamera, I haven't been on the boards for awhile so I'm sorry to have missed your questions. I am very very happy with Dr Rhines (NS) at MD Anderson and Dr Engle (pain mngt anesthesiologist) at MD Anderson. I saw Dr Derek Johnson (neurologist) and Dr Lanzino (NS) at Mayo.
The question of when to have surgery is just impossible. I with I had good advice on that front - I could use some good advice myself. The medical team that I have now is very responsive and helpful in talking through pros and cons of surgery which I find helpful. In the end it will be a roll of the educated dice and we get what we get for an outcome. It's the strange thing of SCT experience as we end up being the ones to make the hardest decision of all.
Wishing your family the best. I'm happy to share any of my experiences with anyone as we all learn from one another and are here to support one another
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Post by Tamera on Jul 28, 2015 23:27:36 GMT -6
Hello Dawn,
Thank you for your reply. My husband's doctor at Mayo is Michelle Clarke. She specifically does these spinal cord tumors and on his first visit recommended removal of the tumor. He postponed his surgery from the original date and did go through with it on June 23. He had an ependymoma resection at C7 (deep inside the cord), laminectomy and spinal fusion (C6-T2). The dr. removed the whole tumor and it was grade II with no chemo or radiation required. He woke up able to move everything with full movement and strength, but was / is numb from the waist down. He has mostly normal bowel and urinary function. He can feel very light touch (a feather), sharp pain, and hot/cold on his legs, but no pressure. He can't feel his muscles contract or his feet on the floor. So balance and walking are a real challenge. He was on the surgical floor for a week, then went to Mayo's inpatient rehab unit - an awesome place. In 7 days, I cannot believe what the therapists were able to teach him. He is now in physical therapy locally and will soon graduate from a walker to a cane. So considering the complexity of the surgery, he is doing very well at 5 weeks post-op. But emotionally, things are tough right now. No one can say if or when the numbness will subside, and all doctors have said if nerve damage repairs, it takes a long time. It's a whole new world of adjustment - and he is worried about being able to do his job.
My husband also developed an epidural spinal hematoma (18 cm long!! and "severely" compressing the cord at T4)and was discovered 4 days after surgery via a follow-up MRI. We don't know if the bleed occurred immediately post surgery or a couple of days later. The surgeon strongly believes the numbness is from the surgery based on where she did surgery and that he had not lost any strength or new symptoms. So she felt it best not to remove and to let it liquify and be reabsorbed by the body. But my husband is not convinced it isn't causing him problems. We are hoping for another MRI this week to know the status of the hematoma.
His surgeon and rehab doctors have all indicated he should see some improvement within 3 months of surgery, but general recovery timeframe is 3-6 months. And we all know, it's not over at 6 months anyway! His post-op pain in the hospital was very well controlled with oral meds. I just kept saltines and apple juice on his nightstand and every time they gave him pain meds, he ate a few crackers and juice - never got sick or nauseated once. He really has not had serious pain since coming home. He is gradually coming off the narcotics (and is at low doses) and his biggest pain complaint is muscle spasms in his neck. At least for my husband, keeping his mood up has been a challenge as of late. I hope as he feels stronger and recovers from such a grueling surgery, his state of mind feels better too. As for Mayo, his surgeon was excellent (maybe not bedside manner, but talented for sure) and the care at St. Mary's hospital at Mayo was absolutely wonderful. Lots of prayers didn't hurt either :-) This may be too much info, but hopefully something helps you in your journey. I hope you get all of the answers you are looking for at MD and have a positive outcome...you are right about that educated roll of the dice!
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Post by dawn on Jul 30, 2015 6:59:21 GMT -6
Tamara, I am very grateful for your reply. Information like that is so very helpful to those of us trying to make the decision. All the best to you and your husband!
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