New chairi suferer

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I got diagnosed with chairi malformation 1 year ago now found out i need surgery and am goin in at end of septemeber safe to say im super nervous. Hate this feeling of always bein tired or lazy does it go away??

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  • Posted

    Hi Leanne73120

    Very similar for me this year. Headaches, chronic fatigue, tiredness and poor memory & cognitive issues have blighted my life in many different and unexpected ways.

    Have op scheduled for Aug 7th. On holiday at moment with family and still tired all time when doing v little

    Hoping for best. No idea how long will take for recuperation.

    All best for you. Keep posting. Others like me take great confidence from those that have been / are going through this cursed experience

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    • Posted

      Hi thanks for the reply surgery letter came thru I'm booked in September 9th think I'm finding it harder sleeping now I have a date what's the scar like after as got my brothers wedding 5weeks after surgery. I keep thinkin all the worse but I'm sure it will be for the best be glad to jst feel semi normal not tired feel sick or sore head and back. Accually what is normal lol. How long after surgery did it take for use all to get back on ur feet as I have 2 young children aswell

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    • Posted

      Hi, can't answer that yet as my surgery is in 16 days

      I don't have any formal events scheduled so no pressure to be presentable for a while. Although surgeon apparently saying might be back at work in just 4 weeks, that sounds a wee bit quick compared to what others on this site have suggested.

      Will keep in touch to let you know how I get on. Already done couple of months of yoga to get better guidance on stretching. Think may take a few years to give this oak tree the flexibility of a sapling.

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    • Posted

      Ahh oki yes im sceduled for 7weeks friday. Ill be glad wen its over please keep in touch of how ur surgery goes
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    • Posted

      Hi Leanne73120

      Opywaa Monday early evening. Recovery for few hours then HDU. I will be honest, that Tuesday wasn't painful of my life. In fairness the NS had described it as being v uncomfortable.

      Did improve Wednesday and left HDU a day later than expected. Taking the oral morphine and tramadol and others to manage pain. Strange that sometimes moving head 2 inches can bring on a pressure headache that can last hours. Even electric bed moving up and down. Have. To learn how to understand if feel up to movement, and take it steady.

      Still go downhill in evenings from 7 and head pain takes a couple of hours to manage before can be in position to sleep.

      Appetite left me for much of week and have eaten as much as a sparrow. Took 6 days for some functions to return.

      Just been signed off to go home in last 30 mins, so have daunting 2 hrs to get home this afternoon.

      Wound looks clean and dry and have soluble stitches. Crap haircut was minimised to what I would say is 1/3Rd of a side plate, so not too bad. NS did say that there was insufficient space when he went in, so he "lobbed off some brain".

      In summary, getting better, still painful, but def still worth it for chance of getting better. The road is long, as the song says...

      All the best

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    • Posted

      Count your blessing, make the most of your good day now, start to accepting that you have had decompression, just remember..still take it easy even if you feel better...take time to heal..move about but do not rush..do not go back to work too early nor doing the normal day to day house chores..caus you do not want to go back to have symptom again..its need at least 9 months to have your scars healing..God bless
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    • Posted

      Your guidance was spot on. Think journey home of 2 hours by train and car took a lot out of me. today has simply not improved much. Not getting more than a few mins before next pressure headache I'd triggered.

      Can't get comfortable. Swing from hot to cold.

      Imagine just such it up, and should return to improved in due course.

      Am due to return to work in 5 weeks more. But will only do so if up to it.

      Keep well all

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    • Posted

      Dear Stable,

      LOL you are crazy on a train (..????) and you are going back to work in 5 weeks ..??? ha..ha..ha..you are mad..if I were you..I will be staying out of work for at least 3 months.. get your NS to sign you off..BELIEVE ME>>>!!!!! honestly..I am not trying to scare you off..just think of yourself..work can wait..you owe that to yourself and family..as my NS told me..lots of women are silly enough to be a martyr...in the end bcause they could not wait to be normal..they do such unreasonable things...but the ball is in your court..GOD BLESS..YOU ARE BRAVE GIRL

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    • Posted

      Hi b2wc97455

      First up, I have tell you I am 16 stone, 6'2" ex rugby playing sports obsessive, currently accessorised with a bushy beard which my wife says is the best contraception she has ever found.

      I am not sure I am hard enough as a person to join that select group of people who normally qualify to be called a girl / women / lady.

      I am your standard hard working, beer swilling neanderthal just trying to get on, and be a good dad and husband.

      I was signed off for 6 weeks by the NS, and spent the first of those in hospital. I am conscious that many on these pages make it clear that you need to be ready before that step is made, and I wil take that advice.

      My firm have been supportive, and will accept any delayed return if backed up by letter from NS or GP, and with a slow intro of limited days / hours. If I have to consider flexible hours in the future, I will look at that depending on how I feel.

      By the way, the bouncy train was less hassle than the car which on local roads was hard to manage.

      Just had 2 good hours today so feeling a LOT betterp

      As I leave for work at 6:10 am and get back at 6:40 pm I reckon that I will be shattered for a while.

      Just had 2 good hours today so feeling a LOT better. 😀👏😀

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    • Posted

      Hi SOrry....that is good for you to join..generally man would not like to share their feeling..don't they..(ha..ha..) well, please believe me..you are quite tall ..so that is OK for 16 stone..make sure though you do not go back too early..please get extension..you have to think of yourself..mostly if your work is so understanding..at the end of the day..you do not have disease its defect..if you do not look after yourself then who else..do not play rugby or foot ball..too early...I promise you..I have got some one who could not wait to go back to the normal daily life..in the end another surgery happened...well..that is my advice..in the meantime..enjoy your absence from work..do walking each day..plenty liquid..take some magnesium and selenium (good for brain) ...and GOOD LUCK...have a nice HOT bath put magnesium is good..if you live not far from the sea side..make an effort to deep down your whole body at least 20 - 30 minutes to get enough mineral. (lots of benefit)...LISTEN TO YOUR BODY..try to sleep at least 8 hours....do not be generous to yourself..just remmber..you just have a massive surgery (they cut your C1 (part of your skull) who is your NS??

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    • Posted

      Perhaps I have advanced to neo new man neanderthal?

      No more rugby playing for me, body rejected me and had a couple of knee ops already. Although I played in a fun game last year to celebrate two fella's reaching 50. I think the fact 4 bottles of Port drunk l at half time might indicate priorities in the game. Although few players did get broken.

      Took up cycling as hobby 3 years ago to hold back aging process, and completed a few charity rides to keep focus and provide a decent mileage challenge.

      Went for a walk today and managed around 600 yards whilst my wife picked blackcurrants for some pudding. Have a couple of labradors, and love being out with them, either in field opposite or one of large woods in area.

      Will get some magnesium & selenium. Generally don't indulge in supplements..

      Can I qualify what "do not be generous to yourself" means. If I were to be, it would mean a new bike, but I don't need another. Yet.

      My NS were Mr Richard Gullan and Mr Nick Thomas of King's College Hospital in London. Former looked after my wife who had spinal issues 12 years ago, but which didn't manage her operation.

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    • Posted

      wow that is good you managed to walk 600 yards..it took me 3 months to do so..I am still walking each day (2miles) but not going back to work yet..were the NS are in the list of Ann Conroy Trust..well you seems Ok, so they have done a great job..generous to you self..I meant generous for doing a lot of things in a matter of short time...I know good magnesium and selenium is worth while for your health..or if you can..get multi vitamin which content magnesium and selenium..I think you done and plan doing all the right things..just remember..its early yet..so ..take care of yourself.
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    • Posted

      I am a country boy at heart, and if I feel up to it, I will be outside at least once a day, preferably with the dogs is good for my health and my soul.

      Still trying to get my hands on a more comfortable pillow as can't find any sainsbury's memory foam pillow locally.

      I was sure Mr Gullan was when I did my research, but can't see him on there now. I remember after I had seen a neurologist who made zero sense, my GP and I came up with same name independently.

      If you Google him you will find a plethora of senior roles. And I have no reason to question anything he has said or done to date. Same as way he managed consultations with my wife a few years back.

      Have not got round to supplements yet. Will in due course.

      Today was another slow day, but did manage 500 yard walk in field. Good to take covering plasters off though. Hopefully the strips covering the butterfly stitches will come off this week.

      Best Wishes..

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    • Posted

      Wow you have done amazing stable you should be proud to your self....that is fantastic..but make sure you have to be patient and done walk to fast though..I know you are a big strong boy,however what you have its not a disease its more like defect..now you have that sorted..take care of it..sometime you have to think about yourself in long run it would be good for people surround you. If you can't afford supplements yet..do you know..anyone who grown vine (grapes) if you know..you could ask them to give you some of the leaves (the young ones) ask your wive to cook it for you have it twice A WEEK ..just do it like stir fry (onion, garlic, salt and pepper, chilli (if you like spicy food) saute in HOT olive oil then put the vine leaves..you can eat with rice, or potatoes or just like that...''For general health and wellness, grape leaves are a good source of nutrients, including vitamins C, E, A, K and B6, plus niacin, iron, fiber, riboflavin, folate, calcium, magnesium, copper and manganese. Very good as anti oxidant/anti inflammatory and its free..if you can get some one to give you some.

      But yes....carry one ..what plaster did they put on you???, I did not have one, only stiches..it was taken out 2 weeks after my surgery. When will you see them again (Post decompression)..make sure note it down how you are doing daily...are still on medication..??

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    • Posted

      Morning b2wc97455

      The main I am following here is the most common on the CM threads, namely the "listen to your body" advice

      Essentially, I don't make any plans, but if I'm feeling good enough, then I take advantage and do something that feels reasonable.

      Yesterday I felt poor in morning and then improved mid afternoon, so celebrated by getting dropped off to watch a bit of mid week cricket at my village club. Great to see some faces who aren't medical. Thought it would be 40 mins, but stayed for couple of hours.

      Its good to get out! People generous with support.

      Didn't have negative reaction on return home. And today halved meds for first time as not sharp headaches at all. If need to, will raise again, but closer get to drug free the better.

      Apparently my daughter has some magnesium, and she is back tomorrow, and can share. My wife was a chef for a number of years, so could make a clarks shoe tasty if she tried, am sure could make the home made concoction attractive

      One moment at a time. One day at a time.........

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    • Posted

      Good Morning Stable, 

      Its seems that you had a great day, be careful though, because sometime if you still under the influence of the drug...that feeling good factors is due to of the medicine you are taking, just be sensible, and fresh air and seeing people you like also help your well being... its great if you are taking that approach of getting reduction on drugs intake...our body can heal it self as long as you are doing the right thing (eating healthy, moving about, plenty liquid) try to quit smoking, alcohol, frying food, lesser meat..more green which have lots of glutathione is good for our brain such as : broccoli, kale, spirulina...and keep being positive you will get your QOL back sooner... Very Well Done!!

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