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Chiari Decompression surgery

Posted , 14 users are following.

hayleybell
hayleybell

Hello All......

I promised I would write again with an update after my surgery.... so, here I am!

I had my Chiari Decompression Surgery 12 days ago now.

Honestly, it was a hard choice to make, (I have 3 children & a wonderful husband too of course!)

I suffered for more than 7 years after my first diagnosis, many repeat MRI's and panic trips back to neurologists as my symptoms worsened.

Finally, last year, after thinking I had had a mini stroke, only to find out I hadn't- I knew it was time to take control- ditch the neurologists and find a Chiari specialist.

My "quality of life" was hugely being affected as the months went by.

I found an excellent neurosurgeon in Liverpool who is very familiar with Chiari.

I had my surgery, I am home now, doing well.

Yes, it hurts, yes, recovery will take time! But, my neurosurgeon was really pleased with how it went. My brain is slowly adjusting to the the new pressure & flow of fluid.

I was lucky & had no major complications & was well looked after by the NHS. While I was in hospital I met many other Chiari decompression patients, all with a different story to tell.....

I know to expect recovery to take some time. Each day at a time......

If I can offer anyone any support- please just ask....this forum helped me not to feel so alone and I would like to offer some help back in return.....

Will keep you all posted with my recovery-if you want?

Thinking of you all.....x

6 likes, 39 replies

39 Replies

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  • Mysticaljg
    Mysticaljg hayleybell

    Posted

    Congratulatiosn on taking the huge step and havign the surgery and glad to hear it is all going so well.

    My son, aged 23, had his surgery on 23rd February and after a couple of complications (he had to be drained of fluid and have a cerebral shunt inserted) he is actually back at work for the first time today on a very slow phased return.  it is amazing how good our NHS is and how lucky we are to have it. Dan (my son)'s main issue now is he has lost all iof his fitness and needs to work hard to get even a small percentage of it back but his pain is all but gone!

    Good luck for the rest of your recovery! xxx

    • hayleybell
      hayleybell Mysticaljg

      Posted

      Thank you for your swift reply....I am so pleased, despite the complications, that your son is pain free and already back at work! That really is amazing!

      I think the younger you are (in some cases) the quicker one bounces back!

      I understand his loss of energy- each day I can feel my muscles getting weaker! It will take time before I go for my speed walks again!!! Little and often perhaps?

      It is a massive operation and the body deserves the time heal itself, but we are also built of muscle too, thankfully that has memory- so I am sure Dan & I will build our energy up again, everyday......little & often.....

      All the very best for your sons complete recovery. X

    • carolinagirl1
      carolinagirl1 Mysticaljg

      Posted

      Fantastic! Can you tell me where your son's pain was? Was it chronic? Thank you.
  • carolinagirl1
    carolinagirl1 hayleybell

    Posted

    Great to hear of you getting answers and help after struggling for so long, I am happy to hear and best wishes for the recovery period too. . Its such a comolex thing and doctors seem to disagree on chiari often leaving the paitient in mysery. You mentioned meeting others with Chiari while there. Did u run across anyone that suffered with chronic PAIN in their legs or feet?.
    • hayleybell
      hayleybell carolinagirl1

      Posted

      Thank you for swift reply.

      Yes I did meet patients with pain in legs and feet, they had weakness too.

      Full brain and spine MRI is the very first thing that needs to be done x

  • paintdoctors
    paintdoctors hayleybell

    Posted

    Hi,

    thank you for your posting. I really hope you recover well. I'm Steve and I have Chiari ! and wondereds if you could advise me of your Dr's details when you are able to do so.

    I Have only had it a year after an accident but my symptoms have been labelled as anxiety.

    I'm in the process of higlighting the chiari as it appears to have been overl looked as the cause to my tremors, tingling, tinnitus, weakness, blurred vision etc.

    Thanking you in advance

    Steve Walton

    • hayleybell
      hayleybell paintdoctors

      Posted

      Hi Steve....

      Sorry to hear you are also battling to be heard!

      Was it a car accident that caused it?

      I had a car accident on my way to my pre-op! Bad luck huh? Hit by a tanker lorry! I was terrified it had made my chiari worse, I had terrible whiplash & lost the use of my right arm for over a week!

      Thankfully I recovered well physically, but mentally....well not so well, I was cut out of my car.

      All the stress was not needed before my brain surgery! I had my op 4 weeks later! (13 days ago)

      I need a holiday soon......lol

      My neurosurgeon is based at the Walton centre in Liverpool. They have an interesting read on the website for chiari & Syringomyelia.

      Mr Buxton was my NS, there are several others that are based their who also have experience in this field. Your GP can refer you, make sure when the referral is done as much info as possible is sent, name of hospital and all treatment carried out, hospital number, MRI etc etc, it makes it easier for them then!

      Good luck....let me know how you get on!

  • rachael02836
    rachael02836 hayleybell

    Posted

    Hi, i suffered for 10 yrs thinking i was going crazy and was sick of drs testing different " migraine " tablets out on me. Finally a new young dr came and sent me for an mri because she thought it was chiari. When the results came back it was a huge relief more than anything.. There was light now..

    After speaking with my surgeon we decided to go forth with the decompression surgery.

    The surgery went well, and after 3 days i left hospital in pain but with hope that it would help.. That was last april 2014.. I still have the headaches, although not as servere nor as often. I still suffer with neck pain too. But since the op iv had shakey vision, it jumps very fast, also when i went for my last eye test my vision in my right eye had dropped by 2 levels . i need to go back for another eye test in 6 months! Im not sure if its because of the surgery ? Could be a risk ? Although i was never told it could nor have i read anywhere.. Im finding it hard to sleep too.. But when im asleep its hard to wake up. Has anybody eles suffered or heard of this ? X

    • AllieDo
      AllieDo rachael02836

      Posted

      I know this post is 2 yrs old - however I hope you are doing better!  I had decompression surgery 10 months ago.  I had trouble with double vision prior to surgery, my surgeon thought it would go away after surgery and it got worse.   Now I am wearing thick glasses with prizms....  which is helping but I have hit the max on the strength of prizms I can use.    The eye specialist is thinking I need to have surgery for the muscle imbalance..... so we will see.    I am hoping your eyes have gotten better.  Would like to know how you are doing  Take care

       

  • deeps29
    deeps29 hayleybell

    Posted

    Hi there ... just joined this forum n read your experience I have been diagnosed with type 1 n neurologist has given me time to decide for decompression surgery they said I can either go for non duraplasty or duraplasty surgery ... I watched video of the surgery it looks so scary to me ... would be nice if u can share what type of surgery u had and how did it all go ?? Will look forward to your reply

    Thanks

  • caroline63191
    caroline63191 hayleybell

    Posted

    Hi, well done you, I hope your doing well. I'm having my surgery on the 10th July. I don't know anyone who's had the Foramen magnum decompression. Do you really feel crap as I'm guardian to my grandson & not sure on the support I might need. Is it quite bad recovery. If you could just give me some insight to how you felt it would help. Thank you. Caroline

    • Stable2309
      Stable2309 caroline63191

      Posted

      Hi Caroline

      I would love to track your progress as I am having decompression surgery in August.    So any updates from you on this subject and i am very much all ears.

       

    • caroline63191
      caroline63191 Stable2309

      Posted

      Hi, they have now put it forward to Monday 3rd 😳 I'll keep you updated as much as I can, you'll probably have to remind me...lol. Working weekend so that will hopefully keep my mind off what's going to happen Monday. Take care x

    • caroline63191
      caroline63191 Stable2309

      Posted

      Hi I hope your well & not panicking too much! I've had my surgery and after just over 3 weeks starting to not feel to bad. The first 3 weeks rant easy as you feel one day recovering then go downhill again the next. My advise is to make sure you keep taking painkillers ( I cut down when I thought getting ok) and rest as much as you can, I spent the first two weeks quite a lot in bed sleeping so do it if you can. The surgeon done an amazing job on the scare so that was good. It's going to take time to get better. I'm learning to take each day as it comes....today a good day 😊. If you want to know anything or just be in touch after your op please do so. I wish I knew someone who had it done as still would like to know more about recovery. Take care & try not to worry. Caroline x

    • Stable2309
      Stable2309 caroline63191

      Posted

      Hi caroline63191

      Delighted to hear news of your progress. As we know, many don't find it, so truly happy to hear from you.

      Was not imagining would be magic wand solution, but a recovery over time..

      Currently on a family holiday at Father-in-laws house in Province in south of France enjoying warm weather and some v lazy days with lots of sleeping / resting. Then back to work for 5 days before op.

      Beyond painkillers when required is there anything you would suggest based on your experience you would suggest eg special pillows etc?

      Can I ask how you like felt post op & how long your stay is hospital was?

      I will raise a glass to many more good days for your future.

      Best Wishes

    • caroline63191
      caroline63191 Stable2309

      Posted

      Hi, that sounds like a lovely relaxed time your having, enjoy though I'm sure you don't need me to tell you that..lol. My son had bought me some new pillows which were a godsend as nothing better than nice new comfy pillows at the best of time, they did make a difference so yes get some if you can. My op was around 2:30pm I was in recovery not sure when but you have one to one until ready to go to HDU I went there around 9:30 pm. Yes your head sore & you feel like crap...I was there until 12:30ish the next day Tuesday. I was surprised I didn't feel as bad as expected until around 5:30 when I was throwing up. That could of been due to not eating as had no appetite or just general everything. Was given anti sickness and painkillers through cannula only for that night then not so bad the next day. Still had a lot of pain so was given morphine & just rested. Thursday they said if I wanted to go home I could or stay until I felt well enough. I went home on the Friday afternoon so four nights I stayed in. Make sure you ask about things to expect as no one told me. So I'm going to call hosp in another week or so to see is it normal my left hand side of head a bit numb. Always ask questions or write down before you go in so you won't forget. I'm not sure if I can add picture of my head a day after surgery on here I'll try...thank you for the raised glass....let me know how it goes with you. Photo added upside down....😊 Take care x

    • Stable2309
      Stable2309 caroline63191

      Posted

      Thanks for all info shared. Will probably push for a new pillow in knowledge that as soon as any any recover is evident, one of my teenage girls will probably swipe it.

      Spent so much time resting on sleeping here but still tired in evenings, and no respite from headaches, which get worse if do too much. Didn't help that Mistral wind has blown for 3 days straight and had to lift something heavy out of pool.

      Please keep posts coming. I can't be only person interested in first hand updates.

      All best for your progress

      X

      PS have a pix of drink in your honour, but not worked out how to add it

    • b2wc97455
      b2wc97455 caroline63191

      Posted

      Hi Caroline,

      I had my surgery over a year ago, I am must better and free drug, as you are.. I took the advice of my NS, took it easily up to around 4 months, then slowly increase my activities, but completely change my life style, now i HAVE PRACTICALLY MY LIFE BACK, SOMETIME I GOT TINGGLING NECK AND BACK PAIN, BUT NOTHING TO COMPARE PRIOR DECOMPRESSION,  so I will advice to others take it without any reservation get surgery done..then it wont damage their nerve ..chiari if that is too be left ..dont get any better (that is my experience)

    • Stable2309
      Stable2309 b2wc97455

      Posted

      Thank you for message of hope!

      Won't be same for everyone, but we all need a bit of hope in our lives

      Good summary of your current status.

    • b2wc97455
      b2wc97455 Stable2309

      Posted

      Just listen to your body..!!!! and dont stress yourself up...I promise you..if you listen to the advice of the NS..take a deep breath..keep moving..b positive YOU WILL BE FINE...
    • Stable2309
      Stable2309 caroline63191

      Posted

      Hi caroline63191

      Brief msg following my surgery on Monday. Op went well apparently. NS said he had to lob off some of tonsils to make space. Recovery was hard despite morphine and tramadol and others stuff

      Vomited 3 times which really hurt. Headaches so powerful can't sleep.

      Today better as shower, walk, sleep during day.

      Will catch up when at home

      All best

    • caroline63191
      caroline63191 Stable2309

      Posted

      Hi Stable2309

      recovery is awfull especially at first, my headaches more or less wouldn't budge with all that med either, what made it slightly better some of the time was I had oxygen. Ooo getting tonsils hacked as well. When I finally received discharge letter (3 weeks later) they said on there I had a lamectomy well think it's spelt that way. It will get better even though it seems it will never! Look after yourself, keep taking meds & plenty of bed rest, hopefully sleep.

      take care & if you want let me know how things are going x

    • Stable2309
      Stable2309 caroline63191

      Posted

      Hi Caroline

      Thought it was high time I followed up on our previous updates to check how your doing so we can compare notes.

      Yesterday marked 10 week anniversary since my op. Reality is progress has been slow, and I have to say it doesn't feel like winning yet. There are less headaches, and most of them are a reaction to something else.

      I still feel excessively tired in the evening.

      I do feel more stable now, but progress is on par with a sloth.

      How are you fairing these days?

      Best Wishes

    • caroline63191
      caroline63191 Stable2309

      Posted

      Hello, sorry to hear progress has been very slow in your recovery process. Have you had an update with neurosurgeon? Even going at a sloths pace, hopefully its on the up, though must be very frustrating.

      Ive now been discharged from St Georges so that's good, still have numbness on the left side of head, he said they had to move a main nerve over in surgery & I might get feeling back but could take a while. I can live with that as all headaches so far gone. Cramps sometimes down back of neck but that's if I hold head down too long & it will go! 

      I hope hope things start to feel better sooner than later. Still take things easy when you can.

      all the best for the future. 

      Best Wishes 🍷

       

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