Scared pt. w/ Chiari Malformation surgery soon

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Hello,

I'm 39 yrs. old diagnosed with Chiari Malformation on Jun 3,16. Talked to my dr and family about surgery. I just got my date today for surgery July 5. I'm scared. I have 4 children and that's all I can think about. I've always been their wonder woman. I have talked to them about my surgery and it's depressing.

Any suggestions on how to handle the situation and what do I have to look forward to after surgery.

TIA....

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  • Posted

    Hi Gemini, you need to rest a lot after surgery or you put yourself back and takes longer to recover. Get as much help with the children as you can, if there old enough give them little jobs to do to help. Probs wear off after you been home a while, it did with my husband! Haha you may not be too bad but I was very sickly and dizzy needed help with bathing walking ect for about a month. If your not like this then great as some recover well after op. Everyone is different, but at least you will be prepared. It is scary, but I'm 20 months post op and working part time, some days I feel rubbish and others are canny. It's not a cure but to prevent symptoms getting worse. Wish you well and speedy recovery. Here if you need to blow off steam hun x

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    • Posted

      Thank you for your input.

      Luckily I have my mom taking care of me for the 2 wks after surgery. My kids are old enough to help out now. Hopefully that doesn't change after I come home lol. Just nervous my surgery is coming up.

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  • Posted

    Hi Gemma

    I was also diagnosed with Chiari 1 malformation along with Syringomyelea and a grotesque sized Syrinx in December last year. I was suffering chronic debilitating pain and loss of feeling (numbness) down my right side.

    My fiancé and his family had no idea it was so serious until I had to take myself to hospital on Jan 4th 2016 where I was further diagnosed with the Chiari 1 malformation. As soon as I was told, it was a no brainer (excuse the pun!) but after being told what the disease of my spinal cord and Chiari would have, I said book me in!.

    I cried for 5 min st the thought of the brain surgery, but then I started to research the disease/illness, it made me feel stronger and empowered my decision to have the surgery.

    I was out of it for 4 days, so don't remember anything, but when I started to come around I won't lie, the pain in my head was excruciating, I couldn't move my head at all.

    By day 5 I was feeling very sorry for myself and thinking what have I done. By day 7 I started to feel less sorry for myself?? And started doing slight movement in my neck and head. By day 10, I wanted to go home, I was 3 weeks in total in hospital.

    It is a very slow recovery, you have to pace yourself, I started walking on my treadmill at home for 5 min a day and soon I was walking 15 then 20 and so on.

    I got my surgery results in March and it was really positive results, my syrinx is almost all collapsed, but I still have nerve pain in my right side which I now use pain patches for (they are amazing most of the time for me).

    I came back to work after 5 months recovery (but really I'm still recovering, each day gets better though).

    With regards to family for me the best approach was to research so I was knowledgable and could explain everything to them but also you need to have support physically and mentally.

    I can't promise how your surgery will result or how you will feel as every sufferer of these illnesses will tell you they have something different. But I can say I am so glad I did not hesitate once to have the surgery because I feel I have so much better quality of life, I still have the Syringomyelea but I'm learning to cope each day better and I see a pain specialist. I also was so lucky to have an amazing surgeon who was honest and encouraging.

    I know it can be difficult, but if you try to stay positive I am positive this has help in my speedy recovery. You will have bad days but try to just accept those and know that better days should come.

    I wish you well in your surgery and wish you a speedy recovery.

    X

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    • Posted

      Hi Tracy,

      just thought I'd pop in to say hello, am a fellow Syringomyelia sufferer and a decompression survivor, what part of the UK are you in?

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    • Posted

      It's hard Tracy to find someone that lives close. Syringomyelia is such an odd desease. No-one I speak to has heard of it, even our big general hospital has no other patient with it so it gets lonely sometimes. I live in Newbury - Berkshire, such a long way from Scotland!

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    • Posted

      I was the same in the Queen Elizabeth Neurological department, the surgeon I had said he had treated other patient with it but I couldn't get s number from him. I guess it just means we Syringomyelea sufferers are in an elite club??Haha!

      I was directed to the Anne Conroy trust. But I'm managing by myself and pain specialist and family. It's good to talk on this forum too.

      Keep in touch anytime, it's reassuring knowing someone completely understands your bad days. X

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    • Posted

       I tried the the Anne Conroy trust  but there was never anyone on the forum to talk. At least here we can all make some 'talking' friends to blow off steam . From now on I'll class myself in the elite club, we don't need

      to tell anyone it's just the two of us wink

      How does Syringomyelia affect you?

      My hands are awful - my fingers don't work very well and I get terrible backache. Sometimes I get the head pains and people tell me I drag my left leg although I don't know I'm doing it.

      Both my shoulders have packed up with massive rotator cuff tears and I have a hernia. I could go on but the list is long. xx

       

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    • Posted

      Yeah I tried Ann conroy and found this a much better sight. Like you Julia I have a list but I'm not sure what's attached to the condition and what isn't. As seems chiari can set a number of things off.

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    • Posted

      Me neither Helen. The Chiari and Syringomyelia are like labels around my neck! If I go to the doctors with any problem it's blamed on  my 'condition' and I swear that  if I were to grow a second nose on my big toe my condition would be the reason! I wish I could be seen as a normal person instead of an oddity. Hey, on the good side I'm expecting my first grandchild in about 6 weeks and I can't wait, I'm so excitedbiggrin 

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    • Posted

      Oh that's fab, that definatley will give you a boost, I have 3 and although i get tired they make me smile. Granddaughter is 4 and the boys are 6 and 9. When I had my operation they made get well cards, it's was so sweet.

      And when I was up and about they asked me for the photos of my wound to show there friends, lol all you could hear was, urgh your nans brave to have her head cut open! Does make you smile. Do you know what it is yet?

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    • Posted

      Yes, it's a girl! I have 2 boys so it's special for me. Am already building her a fairy garden at the bottom of my cherry tree although my husband tells everyone it's for me because I'm always 'away with the fairies'.

      I had a photo taken of my wound too, god it looked so gross - like Frankenstein.

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    • Posted

      Yes did look horrid, but made me look cool as far as boys were concerned haha. Ah lovely, there all nice but looking for little dresses, and buying dolls instead of cars is nice. Lol

      Funny I was told not to blame everything on chiari and get it checked out separate, but i find they still connect it to the condition!

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    • Posted

      Yes, I'm worried about this too. I can't lift above waist height, can't easily control arm movements and have clawed hands. Someone will have to place baby in my arms and I'll just have to sit and look at her hoping she doesn't move! cry

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    • Posted

      She will still bring lots of joy Julia, it is hard especially when you can't do things that you want to with them. Having a kick round with the ball on the field now with the grandsons is out. But just watching them is a joy too. They understand now as there bit older I can't do what I used to.x

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    • Posted

      I hallo have clawed hand and arms jerk and move where they want but as long as my daughter Is there it's great going in our pool helps a lot and I'm 40 by the was was 39 when diagnosed but I still enjoy my time with him as u with urs

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    • Posted

      Hi im from Glasgow! I'm just newly diagnosed but so glad to see someone nearby who also has chiari. R u at the southern/qeuh?

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    • Posted

      Thanks Helen, you give me hope and enthusiasm!

      I'll be the nanny storyteller and mischief maker that's for sure.

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    • Posted

      Haha yes for sure Julia.

      The boys asked there mum for a game once and she told them no! She overheard them whisper to each other - ask nana she will ', got me wrapped round there little fingers lol

      We still have our uses.

      I have just been to see my chiari nurse today as I'm getting awful tintinus and tight head ache, my jaw and face feel bit weird too. Seeing consultant and discuss if need scan as not had one since before op.

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    • Posted

      Thank you for your response. Just a Lil eager to get this surgery done. I have the best support system my family, friends, co- workers. They all say I have to take care of myself and not worry about everybody else. It's me time... it's been stressful to my daughter being due in Aug... I'm hoping I can heal quickly but you never know what can happened. Everyday I think about my surgery coming up and get mixed emotions.

      I will get through this.

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    • Posted

      I expect you'll be sent for another mri, maybe you have a little fluid build up that they can sort out. I'm trying to drink veg juices to reduce fluid build up and also to lose some weight as I'm sure being so fat isn't helping things.

      It might be reassuring for you to have a scan to rule out the obvious worries. The head tightness is horrible. I often find that when I get that I  subconsciously clench my jaw which leads to aching face etc. I hope they get it sorted for you Helen x

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    • Posted

      Yes I'm wandering if I'm clenching my teeth sleeping , but as you say may be bit of a leak. I'm usually really positive and try to look on the bright side but found myself getting upset when i was speaking to the nurse! Didn't know where that came from!

      I was explaining about the situation with the bulging disc and bursitis, bladder prolapse ect... Must have all got bit too much.

      I'm trying to keep active to stop weight creeping up, but it's hard. Still managing my few hrs as domestic at the hospital but some times I really struggle. Will see what consultant says Julia and let you know. X

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    • Posted

      I think I know why you got upset. We try, as mums, wives, grannies to be the strong ones and don't let people see what's really happening or we feel like we're always moaning about aches and pains. I think you use humour to mask your feelings like I do. Occasionally, when I'm seeing someone I don't know well like a phisio for my hand splints they ask about my problems and I burst into tears! Then all this stuff I've been holding back comes blurting out. I feel embarrased afterwards.

      My weight is out of  control. I stopped smoking two years ago and although I feel better for it am now about three stones over what I should be. Trouble is when everything hurts it's hard to exercise, then I'll sit around eating because I'm so bored with everything (hence why I'm always on this computer). Never mind, I'm going to get the dogs out now and walk off some calories xx 

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    • Posted

      Yes your spot on Julia. I must admit when I have walked a bit I do feel better, I used to have a border collie for 16 yrs, but was so upset after he died I couldn't have another just yet. But best thing in the world to get you off the couch, and we'll done for packing in smoking I know it's not easy. And it's so easy to munch all day, if I don't keep myself occupied I'm the same. X

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    • Posted

      Hi,

      I was a patient of Dr Mathieson at the QEUH/southern, in the Neurological department. I was in hospital 2 weeks before my Decompresion Surgery on Jan 18th 2016, and stayed 10 days after my surgery. I was ready to go home to my own bed and fiancé. It was a rough 3mths before I started to make real progress, but then had a setback and had to be admitted to QEUH again, I collapsed (I have an Adrenal problem too, caught infection but it floored me (literally??). Made some more progress and then a further set back, admitted to get pain under control, another week in hospital. But 5 and half months on , I'm back at work which has helped me mentally make even more progress.

      I hope you are doing well also.

      It's so strange that when my first diagnosis happened sept'15 I felt like I was on my own and that no one could possibly feel how I feel or understand that I might look ok on the outside but feeling like I'm dying on the inside.

      As much as I would never wish this illness on anyone, it's also comforting to know that there are people who do understand.

      If you feel like talking don't hesitate to get in touch.As hard as it seems, try to stay positive, are you booked for surgery?

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