anyone out there

[jaimee]

Hi, on my birthday 2 weeks ago I was tild i have a intramedullary tumour in my spinal cord, it is a mass that starts just above c1 and finishes jyst below c4. I was told that i would not last the year and it was going to cut my message to breathe and all off, my only hope is surgery, I still feel normal, i still feel like me and I find that it all feels like a bad dream, I have a 10 year old daughter who i have never been away from and now I have to not only have surgery but also rehab in another town, i am grateful that i get a second chance and that i will get more time with my daughter, but because I don't know anyone that has been through this I am not sure what to expect after the surgery, i am aiming to be the miracle patient that every thing goes perfect for but it would be nice to know a little on what to expect, i think not really having a choice about the surgery has helped me ccome to terms with it but still rather scary, they don't know which type of tumour it is till they get in there but the surgeon is 60% sure it is A ependymoma, i guess I looking for someone who has or us going through the same thing, it feels all a little to isolated at times when i try to talk ti family and friends about it. Which i have an amazing support team but even they have said they don't know what to say.

[CD]

I had an ependymoma removed at the C2 1 month ago. I was in ICU for 5 nights and inpatient rehab for 2 weeks. I have nubness and tingling in both legs and feet and left hand. My tumor was blocking 98% of spinal cord so surgery was performed 48 hrs after MRI results. Any tumor around the c1-c5 areas are risky procedures. I didn't have a bowel movement for 2 weeks and had bladder issues as well ( now back ) but nog like before. The surgeon retracted 85% and I will have radiology in six weeks to remove the rest. Stay strong

[M]

I had a tumor removed shortly after giving birth to twins. The resection was complete but I was left with deficits. I spent one night in the ICU, five days in hospital, six weeks in rehab. I was already in bad shape prior to surgery, and couldn't wait long. Two important things to remember. Find an experienced doctor who has done this procedure before. After delivering the twins, the chief of neurosurgery didnt want me to leave hospital so that he could operate. Unfortunately, what we have is very rare and there are not that many people with enough experience. I left and found a doctor with more experience removing these rumors. Don't rush into surgery until you have found a competent doctor. Secondly, try to be as healthy and strong as possible before surgery. This will help your recovery. I'm so sorry that you have to worry about the effects this will have on your daughter. I feel that being a mother kept me from being totally self-absorbed and gave me motivation to work hard. This is not a race. It's a marathon. Like others on this site have said, I have had to get used to the new me. I was in a lot of pain and still am. But having my children has given me a reason to keep going. You have to remember that you will get through this.

[dmdgood]

Dear Jaimee. I also have an intramedullary lesion, at about the same place as yours. It's 3 cm long and 1.4 cm wide, so it's quite large. Three out of 5 neurosurgeons think it's an ependymoma. I was diagnosed in mid January this year. The neurosurgeon that I went to initially was surprised that I wasn't wheeled into his office and on a ventilator. He told me that I had weeks, at most months, to have surgery. It has now been 4 months, and my symptoms haven't changed. The neurosurgeon has since revised his opinion about the urgency of this thing. He thinks now that it may even be years until I would need surgery. I'm 45, so it is very likely that I will need it, but not immediately.

Reading your post, I remember how scared I was like you when I got the initial diagnosis. But when I thought about it, it is very likely that I've had this for years. So it's not likely to be dire for me within weeks. I think I've got time to see what this thing is doing. I have come to a greater acceptance of my diagnosis with time.

My symptoms are tingling in my hands and feet, a burning sensation around my forehead, tension at the back of my head, and a sore neck often. The neurosurgeon told me at my first visit that I'd probably not be able to swallow and my breathing was going to be compromised. I spent the next two weeks having difficulty with those two things, but I then realized that that was psychological. I've been fine since.

I'm not saying don't believe what they tell you, I'm just saying find out for yourself what your tumor is doing. Decide also whether you need surgery straight away or whether you can wait for a while. I'm hoping that there'll be some amazing technology that will mean I won't need surgery. Wishful thinking I know.

Remember also that there are people on this site who have had surgery high up in the cervical area (like M and CD who have also responded to your post), and are not on a ventilator. From what I can gather, they are pretty functional with some sensory issues and some pain I'm sure. But they're independent and for the most part seem to be doing well. A couple have done amazingly well. And you might very well be one of those! Also there are people like me watching and waiting.

I wish all the best whatever you decide. Keep us posted. I would be very interested knowing how you go.

[dmdgood]

P.S CD and M. Thank you for your stories too. CD, I hope your radiation goes well. Please keep us posted on how you go also. M, I'm in awe of people with children who go through this, and you have twins!

[CD]

Just some more info. to help with your decision. I believe I have had my tumor for 5-10 years. During that time frame, I had to urinate more frequnetly than my peers. The pins & needles like feeling in my right hand and feet started this February which turned into vision issues in late March. I went to ER and luckily I had a great ER doc who linked the frequent urination and nubness to a neurological disorder and scheduled an MRI. Since my tumor was blocking 98% of my spinal cord surgery needed to be performed ASAP. I had surgery 48 hrs later. I didn't even have time to process what was happening and trusted my nerosurgeon. From what I have now researched I think I am doing well. I can walk without a walker but am slower. I have numbness and limited use of my left hand and my feet are numb but that may improve with time. Everyone is different and not all nerves heal the same. I now realize how risky my surgery was and am grateful that I can walk and talk. Sure my life had changed but I am grateful to wake up and make a cup of coffee. My doctor gave me a 5% chance of being paralisis or death prior to surgery but again i didnt have much of a choice due to how much space the tumor was impacting. Do your research and get several oppnions if you have time. Stay strong

[littlesister]

I'm sorry you have the need of the boards here but glad you found them. There is a wealth of good information here and people who have been there. The best advise I got was to choose the surgeon very carefully and to do my homework. I ended up traveling three hours for the surgery and was in ICU for a week, but thankfully almost 5 years later I'm still upright and doing okay. I'm sure by now that you have heard of Dr. Jallo, if not do a search of him on these boards and they will look at your film and help you find the right surgeon. Good luck and God Bless.

[Tamera]

The advice noted in some of the other posts is one of the most important - choose your surgeon very carefully. US News and World Report issues best Neurology Departments / Hospitals. The surgery you will have is rare, so try to find a surgeon who does these. Mayo, Johns Hopkins, MD Anderson are among the top places to go. And there is nothing wrong with a second opinion. My husband traveled to two major hospitals before deciding where to go. I've seen Dr. Jallo's name (johns Hopkins) numerous times on this website. We researched Laurence Rhines as a possibility at MD Anderson and someone else on this site indicated she is seeing him. My husband went to Michelle Clarke at Mayo. He did not come out of surgery unscathed (5 wks post-op he is numb from waist down but not paralyzed), but we believe her to be an excellent surgeon. Last, there is a link on the homepage of this site for "My Journey with a Spinal Cord Tumor" on Facebook. I think the author's tumor was up high like yours. She wrote a journal of her entire experience and it was very helpful to read. I think her surgeon was in Canada. I'm sorry you have to go through this at all, but it must be even more difficult having such a young daughter. Prayers for you and your family.

[Fresno]

I had an intramedullary grade 2 ependymoma removed from T1-T3 on 7/1. Had it done at UCSF in San Francisco. Dr. McDermott and Dr. Wadhwa were my surgeons. Prior to surgery I had little to no symptoms. Just some pain on my right side that I had been dealing with for close to 8 years. They did an MRI and that's when they found the tumor. I was lucky they caught it early before it got bigger or did any real damage. Spent 2 nights in ICU, 3 in recovery and the rest at St. Francis Memorial for Acute Rehab. Got home on 7/25. My right side is now numb from the chest down. Left leg has "spotty" numbness and both feet are numb. Butt, lower back and front numb also. It's not fun but both surgeons are CERTAIN I will get all sensation back. I have strength and motor function throughout, it's just sensation. Using a walker to get around although I can walk unassisted as well as you can imagine trying to walk with the numbness I described. I'm 39 years old, in good shape, married with a 6 year old son. So this has been a major life change. But it's temporary. They got all of the tumor out and don't feel I will need radiation. The sooner you get it out the better your chances for a full recovery! And I highly recommend UCSF

[Tamera]

Hello Fresno,
Although this isn't my thread, I am very interested in your story. Your surgery was about a week past my husband's. He is numb from the waist down (not paralyzed, just numb), has full motor and strength, and his doctor said he should see some improvement in sensation but can't say how much. We know nerves heal slowly. He hasn't had any sensation improvements since surgery and we are going into the 6th week. I know this is different for everyone, but did your doctors provide you with any sort of timeframe and has any of your sensation changed since surgery? I truly empathize with you...I am watching my husband go through this and trying to adjust. It is very hard right now! Walking and balance are a challenge, but he is in physical therapy and is walking with a walker - may soon to go to a cane. Clearly, you have similar challenges with even more numbness, so hang in there! It's great your doctors' prognosis is that you will regain your sensation! Any information they provided you on the nerves healing would be greatly appreciated.