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....
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
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
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?
Hi Gemini,
I felt a bit strange reading your post. I'm a Gemini and was the same age as you when I had the decompression surgery. My oldest was 14 at the time and my youngest just a year old. It's pretty safe to say that after surgery 'wonder woman' will need a break to get her head to function again. The operation is quite a big one so expect to feel groggy (you'll be on painkillers for a while) and you'll have a very stiff neck. I could do everyday things like bathing and dressing myself but couldn't cook a large meal or do housework for at least a month. Everyone's recovery is different though. You'll need to pace yourself, let others take control for a while if possible. You've been very lucky in getting your surgery so quickly after diagnosis and with only just over a week to go you must be very nervous.
Try not to worry too much, these surgeons know exactly what they are doing. Get yourself a big, fluffy pair of slippers and a comfy dressing gown for your recovery!
It's been well over 20 years since my decompression and I'm in my early sixties now, I'm sill 'wonder woman' to my family and am as normal as anyone else so you have your whole life to look forward to!
I wish you all the very best and all your fellow sufferers on here will want to know how the op went so keep us posted please. xx
Hi Julia
I'm in Glasgow, was also wondering if anyone with condition lived near by?
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!
Good luck love get lots of rest no more superwoman for u for a while cause u might think u can,but u set ur self back take your time as much as u need
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
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
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
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.
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 excited
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?
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.
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!
Dear Gemini, I just had my decompression done a month ago with r Flint and his team at the QE hospital in Birmingham - a day after the operation - my headache and horrendous pain on my neck disappear straight away, what a relief - but the first 3 weeks was the hard part in coping with the recovery period.. (just remember!!! - it is an invasive surgery - they cut your C1 [skull at the back of your head]..so you can imagine, but as long as you think positive that you are going to b e the successful one, nothing could happen to you, Mr Flint asked me to drink at 2 littres of liquid a day. I did not like plain water and I like to drink anything with highest antioxydant for speedy recovery so I drink even until now at least 2 carton of innocent juice or buy a cordial for hospital mix it with your water its help with the recovery. The sooonest you could mobilise yourself after surgery, just move slowly but take it easy. I am listening to my nurses and Mr Flint advice as well, I have not done any hovering, nor cleaning a big task such as bath room, changing beds, I let my husband and my son help me, I start to walk at the back of my garden 3 days ago for 5 minutes then gentle exercise (tai chi type0 for 3 mnts, next week I am going to start walking in the park for 10minutes, and on the 3rd month I will start to walk for 15 - 20 mnts carry on up to 7 mnths and to see how I am doing - so I resigned from my previous job - I used to be Sales Executive - so I travell a lot and carrying lots of exhibition stuff, I do not think this job is suitable for chiarian..as it need lots of lifting..carrying thing, even though my symptom all gone..we have to be careful not to repeat the same mistake such others, they go back to work too quickly..I heard that chiarin should be very careful of what the next role they hold..heavy lifting..repeat movement I think definately is a NO-NO.
At the hospital : I never used my pijamas, I ending up utilising what the hospital had provided me.. its much easier.
I washed my hair the soonest they tok the stiches out (8 days after)
Eat properly try to add with more fruits or supplements
No high hill shoes for at least after 7 months (thats what I was told) - I have a little nap now and then, just listening to my body - I also spray the whole of my body and rub it with magnesium oil after a shower each night. I must say, in my opinion my decompression was a successful one, I am so glad that I made the right decision by having surgery as I have my quality of life back.
I wish youGOOD LUCK!!!! and be positive like what others have put it here, and also be glad that they are going to operate that as quickly as possible some people (to include me) I have to wait for nearly 9 months to have this surgery. So count yourself being blessed and thanks the LORD for that.
I just had my,first grand child can't hold him too long but he is something to live for
Ah that's fab, yes does give you something to focus on, I have 3 from 4 to 9yrs. They never fail to make me smile.
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!
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