pg89
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Post by pg89 on Mar 27, 2016 13:11:12 GMT -6
We found out yesterday that my wife, 26, has an ependymoma of a size of roughly 5.5 cms, from what I think is a bit above C1 to C4/5 (still waiting for the final MRI scans on that). The neurosurgeon we were consulting quickly chatted us through a surgery and we've been trying to read up ever since.
As of now, she has a drag in one foot, some tingling sensations in one arm, occasional (but very rare) blackouts and whiplash/shockwave like feelings, heaviness around the neck, and has had recurrent UTI issues in the recent past. Most of these symptoms have been around for at least a decade, and none have 'flared up' in recent times. We had actually gone in to the doc for a ligament tear in her foot, and ended up with the tumour, that has taken us by complete and unpleasant surprise.
We're shocked, scared and near-devastated. We married less than a year ago, following a romance that started in our undergrad and led us halfway round the world. We have promising careers ahead of us, and had obvious plans for a long and happy life, together.
My first question is the operation itself. Our NS did not suggest wait and watch - in fact he advised against it. We will still take a few more opinions, but would be glad to hear anyone's take on this. My wife is scared of ending up disabled in any manner post op, and I'm scared of her descending into terminal-ness if a surgery does not happen in good time.
My second question is on recovery. I understand it's very subjective and depends on the patient, but again, any insight will be welcome. She's an architect and planner, and has had a stellar academic record, and remains a driven person at the workplace. She's struggling to envisage any scenario that sees her knocked off the career path she's taken so much care to get on to, and keeps on worrying about the impact the surgery will have on her professional pursuits.
My third and final question is on coping. We are very much in love, and are supported by large and caring families. But this discovery has been very traumatic, and the last 24 hours have seen me contemplating suicide if she does not survive this, and her apologising to me for 'ruining my life'. I just want to be by her side and see her happy, but it kills me to see her in this much internal conflict over something that I think no one deserves.
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Post by dawn on Mar 28, 2016 6:43:29 GMT -6
Good on you for reaching out and for being a stalwart husband during this rough time. I have a few resources for you - check out this thread: spinalcordtumor.proboards.com/thread/2378/links-articles-c2-ependymoma-survivorsI waited 4 years and 10 months before having my C1-C2 tumor removed. Surgery was successful. You can see a link to presentation I gave at a conference that addresses what it was like for me to watch and wait. Please also reach out to me if you like and please tell your wife to reach out if she would like to talk. My email: knotmore@knotmore.com. The emotions you describe are very familiar. Feeling scared of losing our careers, feeling the diagnosis is ruining our lives, despair, worry. This is normal, albeit exhausting. If I could go back and give myself any advice it would have been to be very gentle with myself and to reach out to people who are going through the same thing. There are several high cervical ependymoma people here. All are supportive and incredibly understanding in ways no one else can understand.
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Post by dmdgood on Mar 29, 2016 4:59:27 GMT -6
Dear PG89. I totally understand what you are going through. I have a tumor at C1 and peaking into the brain stem, and if that wasn't enough, I also have a smaller one at C3. The C1 tumor is also large, about 3.5 cm. when I got the diagnosis last year, I really thought it was a death sentence. I remember another C1 tumor survivor saying that you go through stages: shock, grief (due to the loss of how you expected your life to be), anger (why me/ us?) and then acceptance (but not necessarily in this linear fashion). I think that a year and a bit later, I am accepting of it. Life deals us with many challenges, and this is the one that's been dealt to me, so I have to manage it as best as I can (we have no other choice really, but to be brave, as my good friend said).
I haven't had surgery and have no immediate plans to do so. I get what you're saying in terms of weighing up the deficits due to the surgery versus the deficits due to the tumor. For me, I just don't think surgery is justified right now, as my life is not compromised by the tumors in any significant way. My symptoms are miraculously mild given the size and position of the C1 tumor. But I know I will have to have surgery sometime, and I'm scared about whether I will survive it for one, but worse than that, that I will end up permanently on a ventilator or quadriplegic or paraplegic. That's what was definitely on my mind when I first got the diagnosis, but since then, I have met a few people with high cervical tumors, some (like Dawn) who have had the tumour successfully removed, and others 'watching and waiting'. I am encouraged by the good outcomes that people have had, even with these high cervical tumors.
You will get through this initial shock of the diagnosis, and given that your wife seems to have been living with the tumor for a long time, bets are its benign, and you are lucky in that you don't have to make a decision immediately about surgery. You have time (at least months if not years) to talk to quite a few people and find what feels right for the both of you.
As Dawn says, be gentle with yourselves (and each other). The shock will wear off, and you will be able to make more rational and informed decisions.
I would rather never have the tumor, but there are positives in it all, like not losing sight of what's most important in life. There's so much about life that I'm grateful for these days - the weather (any weather), nature, smiles on people's faces, a tasty meal, as well as the friendships I have with other people with C1 tumors. Everything has more meaning.
Hang in there. This is not a death sentence.
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pg89
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Post by pg89 on Apr 9, 2016 10:55:10 GMT -6
Thank you, both of you!
The initial shock and grief did wear off, and we began weighing our options a lot more objectively. In the end, we opted for the surgery because we found more sense in 'nipping' the potential neurological damage in the bud rather than waiting for it to grow worse.
We're based in India, and found our way to one of the country's most experienced neurosurgeons. He did explain to us the pros and cons of the surgery very carefully, and remained optimistic about her recovery citing her age, relatively mild symptoms, surgical advances, and relative success in terms of previous patients who have had spinal tumours removed. In any case, the damage had begun to manifest, and we really couldn't find any good reason to delay the surgery. We are at the very beginning of our lives together, and figured that if we have to adapt to changes, then now was the best time to start doing it, rather than waiting for a time when things and achievements may be harder (emotionally) to let go of. It sounds and probably is a bit brash, but of all the options that lay in front of us, and all the advice we could seive through, we found our faith most drawn to surgery sooner rather than later.
The surgery took place 3 days ago, on 6 Apr, 2016. 98-99% resection was achieved, but the biopsy is yet to come in. The surgeon was happy with this, mentioning that the resection was better than he thought it might be. The surgery took around 3-4 hours, with the overall wait time for me amounting to just over 8 hours. Immediately post OT, she was in obvious pain, but was conscious enough to recognise me and her parents, and communicate with us, before being wheeled into intensive care.
As of day 3, she remains in intensive care, on the ventilator. This was expected given the tumour's location, and we are hoping she can make her chest muscles strong enough the move beyond the ventilator in another 2 days. If not, then we have been advised to opt for a tracheostomy to reduce risk of infection and lessen dependence on the ventilator.
Sensation and movement are returning steadily. Day 2 reported sensation in all limbs and movement on the left ones only. Day 3 reports sensation and movement in all limbs. She's able to wiggle fingers and feet, and can feel people's touch on her arms and legs. We take that as good progress.
While she is cathetered, she vividly described her bowels and the somewhat painful contractions that come with it. The doctor took that as a good sign - ability to feel her body parts in action.
Emotionally, she's moved from disturbed to relatively calm and even upbeat. The ventilator tube remains her biggest botheration.
The next few days, months and years will obviously be far from easy, but we are choosing faith in the process over skepticism. I'll hopefully keep up a documentation of her progress!
As for my coping, I'd like to believe I've become quite stoic, and she's become progressively less disturbed over the past few days. On her front, what began with tears and mild deliria post OT, is now largely an irritation with the ventilator pipes and a heart-melting smile when I say 'I love you'. I'm hoping the graph stays up, now on.
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Post by dmdgood on Apr 9, 2016 16:51:56 GMT -6
Dear PG89. Gosh, you've been through so much in the last few weeks! I'm so happy to hear that your wife's surgery has gone well. It'll be a tough road still from here on in, as from what I've heard, recovery is a challenge for anyone. But you have the right attitude - lots of love towards each other - which will certainly help the journey.
Take care, and I hope to hear more of your wife's progress. I wish first and foremost that things continue to go well, and I am also interested given the positioning of my tumor and the fact that it's more than likely that I'll have to go through the same thing some time in the future.
DM
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pg89
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Post by pg89 on Apr 13, 2016 0:24:26 GMT -6
Day 7 post op now. Progress has been slow, but steady.
Her chest muscles are pretty weak due to post op paralysis, and she has yet been unable to get off the ventilator. On day 5, she had a tracheostomy done. It's helped a bit, and she's started off on aggressive physio and ventilator weaning. The docs are planning to shut the ventilator today and see how it goes. She can move her elbow and knees with some effort, and has just begun flexing her fingers. Still in intensive care, but things are looking up!
Mentally fully alert and conscious, and she's kept a good track of time and day. However, there's been a bit of ICU psychosis. It's gradually clearing up, but she's called for her mom in the middle of the night for the past two nights.
Biopsy is still due, and we should get it tomorrow. Fingers crossed!
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Post by kathyb on Apr 13, 2016 12:25:17 GMT -6
It is a very scary time. My neurologist kept telling me it takes time and I had a hard time with that, but, and I hate to say it, he was right. It does take time. Nerves heal SLOW, but they can heal. I am now back to work full time and enjoy my job. I am able to be a mother to my son and wife to my husband, not the one I had planned on being, but the one I am now able to do. It was not and is not easy, but it can be done. There are great supportive people you will meet along the way to help you and your wife. Stay positive, take care of yourself and keep your hope!
(Ependymoma C 2/3-C7 2-2010)
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Post by dmdgood on Apr 14, 2016 20:50:12 GMT -6
So good to hear PG that your wife is improving, albeit slowly. Nerve stuff takes a lot of time. I am also keeping my fingers crossed for a good outcome on the biopsy.
Thanks Kathy for your story too. It's hard, and it also toughens us up and makes us really appreciate life.
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Post by dawn on Apr 15, 2016 6:12:46 GMT -6
You have been in my thoughts. Thank you for the update. I hope things are progressing for the better and I'm sure you are taking care of one another. We are all pulling for you!
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Post by dmdgood on Apr 23, 2016 17:24:50 GMT -6
Hi PG. How is your wife going? My thoughts are with you both. DM
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