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Supporting Stacey and her family through Trigeminal Neuralgia

  • Discharged

      15 June 2022
    Posted by: Stacey Welsh
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    Yesterday I had my final check in with my surgeon (who is absolutely incredible). He is super happy with the success of surgery and recovery. Now 5months post Microvascular decompression and I’ve not had any pain at all, I’ve been off medication since 2weeks post op. My surgeon is confident that the surgery is 98% effective for life, he explained that having surgery early in diagnosis means the nerve isn’t damaged and full normality can be achieved. I can’t put into words how grateful I am to have my life back, it’s been one year since Trigeminal neuralgia appeared out of nowhere, I could not and most likely would not have had surgery through the public system as my MRI didn’t show a compression, I would still be popping pills and in a terrible state. I never take a pain free day for granted, I live life to the fullest, I’m chasing my dreams and have all of your to thank for the rest of my days 🥹 it’s my 35 birthday today and I was able to celebrate unlike last year, my family are well and I’m enjoying the very busy life of studying.

    Here are some photos my surgeon sent me of my venous compression and the process of dissection and sponge/glue placement.

    My scar I’m very proud of, my surgeon did an amazing job.

    And my notes from surgery and diagnosis.

    Oh and me in my scrubs on a shift for my degree (that I would not have been able to do without surgery)

    Thank you again for your kind and generous donations that have truly changed my life.

      4 comments  |  Login to leave a comment

    • 16/06/2022 by Terri

      Stacey this is the BEST update and outcome, I am so happy to hear that it was literally a life changing and saving fund-raiser. Wishing you a long and painfree life. Xx

    • 16/06/2022 by Amanda

      Wonderful news Stacey, I am so happy for you and your family that you've got your life back. Happy happy birthday !!

    • 16/06/2022 by Sarah

      Absolutely stoked for you & your family Stacey!!

      All the best with your pain free future, you deserve it all plus so much more xox

      A real inspiration ⭐️ 💕

    • 16/06/2022 by BRENDA

      Thank you Stacey for sharing your progress thru TN. It is great to know that the small donation from Dad & I has played a part in you being able to have this surgery & now you are able to enjoy your life, family & Midwifery training. Brenda & Vic

  • Final update

      15 February 2022
    Posted by: Stacey Welsh
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    Hi everyone, I just had an appointment with my surgeon, I am one month post brain surgery and can proudly say I am pain free and back to my pre TN self. When I got home from hospital and started weaning off the medication (which was awful I was so sick) I discovered I had a big infection under a tooth in my jaw. All my medication had masked my dental issue so 10days post brain surgery I had a root canal (It needed to be saved as I already had a molar extracted beside it). It was not a very enjoyable time recovering from brain surgery and a root canal, back on pain meds and antibiotics but I am feeling much better now. I have started the bachelor of midwifery and am loving it. Now I am studying I know I never could have pursued my dream of studying to be a midwife without having MVD and for that I am eternally grateful for your donations to make it possible. I can now swim in the lake with my family, and do all the things I use to do. The surgery was a success! I now have my life back, I have nothing stopping me and it feels incredible to have my whole life ahead of me without TN.

    From the bottom of my heart THANK YOU

    I’m off to live my life thanks to you.

      3 comments  |  Login to leave a comment

    • 15/02/2022 by Aasta

      Such an inspiration! All the best with your wonderful, beautiful life. Such a journey and so much more to come! ♥️

    • 15/02/2022 by Sarah

      So so happy to read you have your life back!! You are an inspiration & truly deserve nothing but the best! All the best with your career, you will ace it!!! 💞

    • 15/02/2022 by Elina

      Wonderful news Stacey, I don’t know you personally but so glad you’re feeling better. Go well x

  • MVD

      17 January 2022
    Posted by: Stacey Welsh
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    See the other update.

    I am recovering from MVD, it went well, surgery just took longer than expected as I had a large vein compressing my Trigeminal nerve. I am already TN pain free and it brings me to happy tears knowing I will never be in that pain again.

    I’ve said it before but I will say it again!

    This would not have been possible without your donations! My MRI didn’t show how bad the compression was, surgery was definitely needed for it to be seen.

    Eternally thankful and grateful.

      3 comments  |  Login to leave a comment

    • 17/01/2022 by Jenny

      I’m very happy for you sounds like everything went well.I know how it feels I had the same operation.Now it’s onward and upwards xoxo

    • 17/01/2022 by Amanda

      Stacey, this has made my day. I’ve followed you and your family on Instagram and was devastated when this happened to you. I’m so happy to hear you’re now pain free!!! Congratulations on your acceptance into midwifery. You are amazing. I’m so sad I don’t get to see you on Insta anymore but want to wish you all the very best for your future. Kindest regards, Amanda x

    • 17/01/2022 by BRENDA

      Hi Stacey, My Dad & I have followed all your updates. It seemed strange that you had to wait so long for this surgery, even though enough money had been raised for it. We are so glad though that you have finally had it & can now embark on your new career as a midwife. Is it guaranteed that you will have no more pain from TN, or do you have to wait & see? I do so hope you have been cured of it. Thanks for the updates. Brenda & Vic

  • Surgery

      17 January 2022
    Posted by: Stacey Welsh
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    Hi everyone, long time no chat! To catch you up on the past six months, I passed my course with A grades and got accepted into bachelor of midwifery. I start in 2 weeks time and I couldn't be happier! all while battling Trigeminal Neuralgia.

    My family are all well, happy and thriving.

    As I lie here in recovery after brain surgery I have all of you to thank for making this possible. If it wasn't for your kindness and generosity this wouldn't have been possible. There are no words to express how grateful and thankful I am. I now get to live my life pain and medication free, to chase my dreams of becoming a midwife. I can now be the mother and wife I use to be, without TN destroying my life. I am free!

    Thank you thank you thank you!

    Stacey xxxx

      0 comments  |  Login to leave a comment

  • Surgery date

      30 November 2021
    Posted by: Stacey Welsh

    Hi everyone,

    Today I saw my surgeon after waiting 5months. He was absolutely amazing, saying 6months is a long time for Trigeminal neuralgia affect my life and MVD surgery is the best option to fix me. I have surgery on the 24th January 2022. I am so overjoyed in happiness there has been many happy tears. I’m so grateful to all of you who made this possible.

    Merry xmas to you all, will update post surgery.

      5 comments  |  Login to leave a comment

    • 03/12/2021 by Mackenze

      Such great news Stacey! I think of you and your family often. Miss seeing that beautiful family of yours! Bring on January xx

    • 03/12/2021 by Francene Ellis

      Hi Stacey.

      What great news. I'm so happy to hear of this next step for you for treating your TN. I have often wondered how you were getting on.

      Wishing you and your family all a Happy Christmas. And all the best for the surgery xx

    • 03/12/2021 by Helen Cate

      That’s such wonderful news Stacey! Think of you often, hope you Phil and the kids have a lovely Christmas together xxx

    • 03/12/2021 by Louann

      I helped because a friend had also been diagnosed around your time. She was lucky enough to have surgery in Sept and it was a huge success So all the very best for yours. It sounded like the most horrific pain to deal with

      Here’s to January

    • 06/12/2021 by Julia

      So glad to hear of this update, miss seeing you and your family. Take Care xoxo and bring on January.

  • Not much to update

      9 September 2021
    Posted by: Stacey Welsh

    Before lockdown I tried acupuncture which made my TN so much worse, definitely won’t be having that again. Over lockdown my TN got quite bad with break through pain despite increasing medication. I couldn’t see my chiropractor over lockdown and I think that is why my TN was worse as she has made a world of difference in the fortnightly sessions I had with her, I look forward to resuming now we are in level2.

    For those of you wondering…. the funds are tucked away in a savings account awaiting treatment (hopefully surgery). November feels like the longest wait to see my neurosurgeon.

    For those who donated that followed my Instagram account, I deactivated it 6weeks ago (it was always my intention after a horrible experience earlier in the year where myself and family were unsafe) I finished the last of my jobs in April which meant I could deactivate 3months after (in July). I’m sorry to those who feel they can’t keep up with my progress, however I will try my best to keep you undated on here.

    For now I carry on with all my medication and doing whatever I can to get through each day, just know my GP and supportive village take the best care of me.

    Bring on November with hopefully good news of surgery.

      5 comments  |  Login to leave a comment

    • 09/09/2021 by Chloe

      Been thinking of you. Keeping you in my thoughts. Take care and I hope November rolls around fast for you. Xx

    • 09/09/2021 by Helen Cate

      Think of you often, hoping your chiro session bring you relief in the meantime. 💚

    • 09/09/2021 by Stacey Faaaliga

      Thinking of you and your family. 😊

    • 09/09/2021 by Sarah

      Miss you heaps on Insta, isn’t the same without you! Often think of how you & your beautiful family are.

      So nice to get a update. Take care hun x

    • 09/09/2021 by Mackenze

      Aww Stacey! I am so sorry you are still in a world of pain. It isn't fair at all. I've been thinking of you and your family heaps! Always here if you need anything.

  • Treatment update

      29 July 2021
    Posted by: Stacey Welsh

    A few weeks into my new medication and I have had improvement with the level of pain. Today I had my first appointment with a chiropractor and it was amazing having her knowledge and skill, she worked on my neck, skull and jaw, suggesting I continue going weekly along side acupuncture which I’m booked in for Monday. These treatment methods won’t cure my Trigeminal neuralgia, they will however hopefully help with the breakthrough pain and constant discomfort while on medication waiting to see my surgeon.

    Thanks again for the ongoing support 🤍

      4 comments  |  Login to leave a comment

    • 21/08/2021 by Courtney

      Hi Stacey, just came here to say I really miss you on Instagram, after following you for around 5 years and seeing your updates basically every day for that whole time, it really doesn’t feel the same without you ;-( I hope you are doing okay especially with lockdown and look forward to hearing how you get on once you have seen the specialist if you can update us then on here :)

      Courtney (Instagram: courtzchalmers) xx

    • 21/08/2021 by Stacey Welsh

      Hi Courtney,

      Aww thanks, I’m sorry it just became too much, I’m doing well, lockdown has caused a flare up 🥺 after doing so well lowering my medication I’m back up to maximum dose. I will keep everyone updated throughout the process. I hope you are well x thanks for taking the time to think of me and the lovely message.

    • 10/09/2021 by BRENDA

      Hi Stacey, I really appreciate your updates & share them with my Dad who also donated for you. I am wondering (& sorry to read) that you have had to wait so long for your surgery with a neurosurgeon. I was hoping that with the money raised, it would allow you to go privately & hopefully get your pain sorted a bit earlier, or is there simply a long wait regardless? Are you waiting for the balloon rhizotomy surgery as mentioned in your July update? I do hope you get some real & ongoing relief soon. Kind regards, Brenda & Vic

    • 10/09/2021 by Stacey Welsh

      Hi Brenda, that’s so lovely of you, thanks 🥰

      Yes this is private in Christchurch and I believe is the case nationwide. The balloon rhizotomy is what my surgeon suggested however at my appointment I am going to push for the Microvascular decompression after a lot of research, however I will see what my surgeon says. I’m taking my pain, symptom and side effect diary with me to show him the life I’ve been living with TN. My GP is also supporting and backing me so I’m hopeful I have the surgery I am wanting to hopefully end TN forever.

      My medication change has helped with the constant pain, now I get flare ups I can generally manage with increasing my medication and taking morphine.

      Thanks 😊 I will keep everyone posted

  • Update

      16 July 2021
    Posted by: Stacey Welsh

    Hi everyone, firstly thank you so much for all the love, support, suggestions and donations.

    As you know I was waiting for my MRI results from my surgeon with a date to see him. I received a letter with an appointment date on the 30th November in Christchurch (I know this seems like a long wait however this seems the case nationwide for neurosurgeons) at this appointment we will discuss my options. My surgeon has suggested balloon rhizotomy surgery which damages the nerve and blocks the pain, he also suggested changing my medication (which I have started now and am on day4 after an appointment with my GP).

    So what now? I wait, and carry on with medication until my appointment.

    While I wait, I am going to try alternative treatments (acupuncture and chiropractor) that other Trigeminal neuralgia sufferers have suggested to relive pain. I wouldn’t be able to do this without your generous donations so thanks again I look forward to the day I can get back to my previous TN life 🤍

      2 comments  |  Login to leave a comment

    • 17/07/2021 by New

      Hi Stacey

      Trust that things are going as well as can be expected

      My experience with TN was 4 years of increasing & debilitating pain that Lamotrigine failed to cure

      Tried Acupuncture in desparation which was a failure

      7 years ago at age 72 had surgery Microvascular decompression of the trigeminal nerve which was successful but suffered a perforation of dura matter during the op which was subsequentially repaired by ACC

      I have been fine ever since

      Best wishes

      KEN

    • 17/07/2021 by Stacey Welsh

      I am so glad you live a pain free life now, it sounds like you have had an awful time.

  • MRI Update

      19 June 2021

    Stacey had her MRI on Thursday and now waits for her surgeon to get in contact with results. Thanks to everyone who has donated it’s so appreciated.

      0 comments  |  Login to leave a comment

  • Surgeon & MRI

      3 June 2021

    Stacey will be seeing the neurosurgeon after she has had her MRI which her surgeon has requested before he makes an appointment to see her, she'll be getting the MRI on the 17th of June, from there she will get an appointment & have to travel up to Christchurch to see her surgeon.

      0 comments  |  Login to leave a comment

  • Surgeon request

      3 June 2021

    Stacey's surgeon request is an MRI which the earliest we could get was the 17th then we discuss further. If surgery doesn’t go ahead we will be looking into other treatment options such as

    *Stereotactic radiosurgery

    *Or Balloon compression

    There are other non surgical options such as regular Botox. Stacey will look into every avenue possible to better her life with TN.

    "With everyone’s help, Stacey will have the funds to hopefully book her surgery”

      1 comment  |  Login to leave a comment

    • 09/09/2021 by New

      HI Stacey

      Tks for the update

      I found acupuncture equally useless when I was desparate for an alternative

      Can let you have the name of my brilliant AKL surgeon if you like

      Best wishes

      KEN