Sarah Johnson

Sarah Johnson

Hello everyone! I'm Sarah Johnson, a 24 year-old spinal fusion survivor who has had 4 surgeries. I'm using this channel to spread awareness about Scoliosis and to help those who are having or are going to have spinal fusion surgery. We are Scoli strong! I also talk about health and wellness, and how I deal with my other medical diagnoses. Subscribe for more!

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  • @user-hb6ny1yu9y
    @user-hb6ny1yu9yКүн бұрын

    Thank you so much for sharing your journey! I was searching for spinal fusion videos and so glad I found you. I had a lower lumbar fusion 3 years ago and will get the rest of my back done in about a month. You've given me courage to get this done! I hope you're doing well :)

  • @kaylinburchette575
    @kaylinburchette5758 күн бұрын

    My periods were always irregular, completely disappeared when I was undereating. Gained weight, eating normally; period is still SUPER irregular. I have also been feeling brain-foggy and exhausted all the time. Went to the endocrinologist; my prolactin is extremely low. They scheduled an MRI with contrast to see if there is any tumor. Not sure if I have a tumor b/c I heard it makes your prolactin high. But we'll see

  • @Anonymous-zl6jf
    @Anonymous-zl6jf12 күн бұрын

    I have a a tumor also it’s rather large 20mm by 20mm in that area but I’m having surgery is there any tips for after surgery if anyone has anything

  • @Passs0011
    @Passs001114 күн бұрын

    Hi Sarah, I live in South Africa. The sun is always shining here and there is always the risk of developing skin cancer if you have a light skin. I developed a growth on the lower eye lid of my right eye. I do not know if it is cancer or just a benign growth but I went on a high nutrition diet for about two months and the growth have shrunk noticeably. I would like to share the diet with you. The soup Ingredients: - two handfuls of Chopped broccoli, one chopped onion (purple), two bags of green tea, two pinches of mixed herbs, two sticks of cut celery, Two handfuls of frozen and crushed spinach or kale, half a table spoon of crushed garlic, Three shakes of black pepper, seven shakes of turmeric, two tablespoons full of apple cider vinegar (with the mother), one bag of white onion powder soup for flavour, a hand full of cooked red speckled beans and a handful of cooked mince meat. Just add all the ingredients in a pot, add boiling water and switch the stove on high till the water boils. Then lower the heat until the water simmer, Let the soup simmer for an hour. The soup is now ready. I would only drink water in the morning. At 12h00 I would start eating the soup. There will be about two helpings that you can eat in the 12h00 to 18h00 time frame. I also ate a fruit salad every day in the 12h00 to 18h00 time frame. (Note: Apparently turmeric reduces the effect of some chemotherapy drugs and thus should not be taken during chemotherapy.) During the rest of the week I would also eat food that contains vitamin D like avocado’s, mushrooms, liver and eggs in the 12h00 to 18h00 time frame. It seems to be working for me, maybe it will also work for you. I pray to God the Father in the name of Jesus Christ that you will be healed. Amen. I would also like to share the following six videos with you about salvation and two videos about evolution: Evolution vs. God kzread.info/dash/bejne/p5eTuZuPpN2wYKQ.html DESTROYING Evolution In Under 3 Minutes kzread.info/dash/bejne/pYuZxbKworTcYsY.html Watch the Holy Spirit Work in Her Heart (Very Moving) kzread.info/dash/bejne/m3Z50atrpZnReaw.html Fearing The Lord, God’s Discipline & Sharing The Gospel kzread.info/dash/bejne/lnmHl7mQZpmzotI.html A Clear Gospel Presentation by Pastor Steven Anderson - How to go to Heaven kzread.info/dash/bejne/e4x5x6-Qc9vforQ.html The Plan of Salvation kzread.info/dash/bejne/gqGfyrSGgNnaj5M.html How to Get Saved kzread.info/dash/bejne/k56Lxs2uptW6ZtY.html The Truth About Hell (Selected Scriptures) kzread.info/dash/bejne/c4quxMqYlK_XY9Y.html Best regards Chris “For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life”. John 3:16 (King James Version Bible) Jesus Christ is the only begotten Son Of God the Father.

  • @user-fv3ty9by7b
    @user-fv3ty9by7b19 күн бұрын

    Congratulations Sarah! I am 56 years. I had severe scoliosis over 95 degrees. I had my first surgery in July 2020. it was fused from T1 to the pelvis. My surgeon and anesthesiologist did a miracle. I am always thankful to them. I had to use a walker during the first 3 months. I had my second surgery in April 2024. I am still recovering. Before the surgery, my lungs were contracted, and experienced difficulty in breathing. Now it is resolved. Due to severe curvature, I had a big problem with bowel movement and it is almost ok. Good luck to all those who are waiting for surgeries.

  • @marylagrange5584
    @marylagrange558423 күн бұрын

    I was diagnosed a couple of weeks ago with hyperprolactinemia - they didn't find a tumor but my levels were 52 (I think this is the ML one?) or 1100 (I think 25 is the max normally). Once I read up on the symptoms of it everything matched up too and explained a lot. If I did have a tumor it must be very very small - I had an MRI with contrast. Luckily the OBGYN I saw tested that on the first go (I got a fertility panel done since I'm 29). I've had light periods the last 3 years, and just last month for the first time in 16 years I flat out didn't have a period. I just started cabergoline last week and am taking an 8 week course and then get my levels retested. Dosing for me is .25 mg 2x/week for 4 weeks and then .5 mg 2x/week for the remaining 4 weeks. I am hoping my period returns! Like you said our periods serve a function.

  • @camilane751
    @camilane751Ай бұрын

    Thank you

  • @heatherwaggoner1724
    @heatherwaggoner1724Ай бұрын

    Getting ready to have L5 S1 fusion. Do they send u home with a back brace? Do ya even need one? Trying to figure out if I need to buy one.

  • @mooglies
    @mooglies21 күн бұрын

    If you need one, they will send you home with it. It depends on your needs when they are in there. I am 6 days post op from a major herniated disc, and they spoke about a brace, but after the surgery they were like nope you’re good.

  • @kritisingh9821
    @kritisingh9821Ай бұрын

    Were you having size difference in two breasts as my daughter is having?

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis17 күн бұрын

    Yes, but it’s very minimal of a difference.

  • @DanieleManca1983
    @DanieleManca1983Ай бұрын

    Hey Sarah, just came across your video, thanks for sharing your story, and from your comments, I can see that thanks God your story had a happy ending. I'd like to tell my story, recently, I was diagnosed with Glaucoma and Bitemporal Hemianopia, which are both conditions related to vision loss. Under a year ago I started noticing changes to my vision, initially, these changes involved feeling light sensitivity, but I could still see rather well, so I went on for a few weeks before going to an optic store to get my vision checked. When I did visit an optic store, it was the first time ever in my adult life, in fact since I was a child and I turned 40 YO last year, so you can imagine I wouldn't have much of an idea about what kind of tests they would run. I explained my situation to the optometrist and they very quickly and easily said that I was astigmatic and myopic and hyperopic and they prescribed 3 in one glasses, which I stil have now, although they don't help much. A week after that appointment I picked up my glasses and started using them daily, although I immediately noticed something was off, I still didn't see as sharp as I expected to see with the glasses, which also cost me an arm and a leg to be honest. I went back to the store 2 weeks after and they dismissed me saying the prescription was correct and that most probably I needed time to adjust to using them. I still went back a a few weeks after that, saying that something was off and they told the same gibberish again. Their behaviour instilled in me the belief that ok, maybe their right, let's give it a while and see how I will do in couole months. I thought that I wasn't gonna see as sharply anyway, so I used them for 5 months and then noticed that my vision was actually declining further and went to another optometrist in London, where they did check my field vision and my eye pressure. Thanks God that I went, because my eye pressure was quite high and my field vision, especially in the right eye, was poor. I then went to Moorfield's Eye Hospital ER in London, where they checked me further and determined my eye pressure was too high and needed lowering, I was at the hospital for few hours and the pressure went down, then I was given some drops to keep using to keep it down and they booked me an appointment to be checked at their glaucoma clinic few weeks after. That appointment is what determined that I had some glaucoma, but the field vision loss was most likely caused by a tumour, sitting at the base of the brain, in the pituitary gland, which is making pressure on the optic chiasm and blocks the field vision. After that appointment, I did an MRI, to confirm the diagnosis, and it was recently confirmed that indeed that was the cause of the field vision loss. I am now waiting to be referred to neuro-surgery to have it removed surgically, through what is called transphenoidal surgery, which involves a nasal endoscopy to enter the sinus and get to the spot in which the tumour is located. I look forward to having the surgery and I at the same time, I feel bad for any of us who did consult specialists quite timely, but were misdiagnosed and then our condition got worse. My tumour is a macro-adenoma, which is larger in size than a micro-adenoma, so I am hoping, God willing, it can be completely removed. All the best to everyone else who is having a pituitary tumour.

  • @sarahmurphy-nf4yl
    @sarahmurphy-nf4yl24 күн бұрын

    Gid bless you and I wish you well 💕

  • @joshuasmith973
    @joshuasmith97315 күн бұрын

    Hey man so you have got to give us an update. I went through the same 😊thing dealing with eye doctors over a period of time. I start the medication to lower my levels tomorrow

  • @DanieleManca1983
    @DanieleManca198314 күн бұрын

    @@joshuasmith973 I recently had the surgery to remove the tumour, on June 3rd, the tumour was successfully removed and to date I’ve been recovering well, however, regarding my vision, it’s still as it was before for now.

  • @72chargerse72
    @72chargerse72Ай бұрын

    I have one too Im a 63 yo male.. It has been a problem for about 15 years but my previous doc was incompetent . My prolactine is 83 ish and they put me on Bromocriptine.The treatment makes me nautilus (sucks) and I have a compulsive action too. . It also crushed my testosterone (which left me too weak to do anything but sleep18 hrs a day) sweating. vision issues, ED, headaches and dizziness, trouble concentrating. Lazy docs are a bitch.. right. I get it. My diabetic doc said "I DONT CARE ABOUT THAT" She is gone too. If that little voice says something is WRONG find a new doc. Your life depends on it.

  • @jalenaluera3694
    @jalenaluera3694Ай бұрын

    I’m having my surgery next month and I’m so scared

  • @annebastow1903
    @annebastow19032 ай бұрын

    Hi again. When you have time, please let us know which medication (and dosage) you did. Are you now getting regular periods? Has the lactation stopped? Did you have a ultrasound or MRI to see if your tumor shrank or disappeared? Thanks in advance!

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis2 ай бұрын

    Hi! I was on .5 mg of Cabergoline once a week. Lactation stopped and my period returned around the three month mark of being on the medication. After a year or so, my doctor lowered the dose to .25 mg once a week to try to get me off of it. I no longer take the medication, my prolactin level is normal, and I get my period every 35 days (: . My most recent MRI shows that something is still there, but the doctor believes it could be a cyst. So the tumor shrunk and a cyst could be in its place, but it wasn’t anything that needed attention. I am due to have another MRI this summer.

  • @annebastow1903
    @annebastow19032 ай бұрын

    @@SarahJohnsonScoliosis THANK YOU! Wishing you good health and smooth sailing after having weathered multiple storms at an early age. As a mom, I hope you are proud of your optimism and perseverance! They will continue to serve you well! <3

  • @annebastow1903
    @annebastow19032 ай бұрын

    Hi Sarah! First, let me say that I am so sorry you have had to deal with so many medical issues. I applaud your strength and tenacity!!! My daughter has had a similar journey in finding her microadenoma/prolactinoma. Doctors kept running the same standard blood tests which were yielding normal results. A friend suggested that she go to Planned Parenthood who she views as experts in Women's health issues. They ordered 3 blood tests - specifically Estradiol, Prolactin and Follicle Stimulating Hormone. The normal range for Prolacton is 4.8 - 33.4. My daughter's was 157. Planned Parenthood sent her back to her PCP armed with the test results and suspicion of Microadenoma/Prolactinoma. My daughter feels so validated! While it is hard not to be mad at the doctors and medical system, much of this was during Covid. We are trying to let that sh*t go! Her MRI shows a 8mm tumor on her pituitary gland. We are VERY thankful that these tumors are typically non-cancerous and slow growing. We are now waiting (3 months for urgent referal!) to see an endocrinologist. While trying to find "answers"/information, I came across this meta-analysis: www.ncbi.nlm.nih.gov/pmc/articles/PMC6209637/

  • @lulyr1471
    @lulyr14712 ай бұрын

    Hi! Thank you for sharing! I see a lot of people in the comments that have been able to find help. I have a micro-adenoma and a bunch of hormonal symptoms and no doctor takes me seriously. Can you guys provide info on who helped you?

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis2 ай бұрын

    Research endocrinologists in your area that specialize in pituitary tumors.

  • @joelgarcia6294
    @joelgarcia62942 ай бұрын

    Yeah, it's always your oxygen!!! Just don't worry about your medicine. Worry about your scoliosis. You got some great family and that is what matters

  • @luceilerosario
    @luceilerosario2 ай бұрын

    I have three surgeries for my thyroid

  • @sarahmurphy-nf4yl
    @sarahmurphy-nf4yl24 күн бұрын

    Why 3 surgeries fornyour throid?

  • @rickytoomey2430
    @rickytoomey24302 ай бұрын

    Thank you for the info. I have multiple spine fusion to start within 10 days. I will have my wife pick them up for me

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis2 ай бұрын

    I’m wishing you a safe surgery and speedy recovery ❤️‍🩹

  • @Jadenicoleluna
    @Jadenicoleluna2 ай бұрын

    I been so sweaty too omg when I’d wake up ! Been watching these for comfort bc omg this been just wow

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis2 ай бұрын

    It’s an experience like no other that’s for sure!

  • @bobbobi9676
    @bobbobi96762 ай бұрын

    my prolactin is at 52 and I am starting bromocriptine

  • @TheKoala264
    @TheKoala2643 ай бұрын

    U r so brave!! I’m about to have surgery like this and you’ve kinda put my nerves at ease

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis2 ай бұрын

    It will be painful, but your quality of life should improve. Good luck!

  • @desgoulding7154
    @desgoulding71543 ай бұрын

    Very good video, thank for sharing.😮😅🎉

  • @AngelCyruz
    @AngelCyruz3 ай бұрын

    Hi Sarah , My prolactin is also high May I know after the medication did your Levels decrease?

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis2 ай бұрын

    Yes! My levels decreased, and I no longer have to take the medication.

  • @AngelCyruz
    @AngelCyruz2 ай бұрын

    @@SarahJohnsonScoliosisBut you still went through the surgery? Why ?

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis2 ай бұрын

    I did not have surgery.

  • @heatherr1141
    @heatherr11413 ай бұрын

    I have a whole bunch of health conditions myself specifically a lot of auto immune, but I’ve had thyroid, tumors and parotid tumor that I had to have removed and other things and I have not had a period six months. before it was like four months I keep having irregular. But I was checked and they said I’m not in perimenopause. I am supposed to be having a period, we don’t know why because my thyroid levels are normal. I do have to have a needle aspiration biopsy of the both thyroid tumors because they’re over a centimeter and suspicious for cancer one is high risk, and one is intermediate risk. I have had Dr.do me the same way and not do everything they can or ignore it or say take BC. With all my health conditions I’m concerned something more serious is going on. This sucks to not be able to trust drs. Thank you for sharing.

  • @sarahmurphy-nf4yl
    @sarahmurphy-nf4yl24 күн бұрын

    Change ti another doctor. Important to get a second opinion if you feel something is off. Gis bless 🙌 🙏

  • @marylagrange5584
    @marylagrange558423 күн бұрын

    Have you had chemotherapy at all for those previous tumors?

  • @heatherr1141
    @heatherr114121 күн бұрын

    @@marylagrange5584no the parotid was not cancer but were bad and would continue to grow and cause problems and the thyroid tumors had an undetermined atipia . So just going to ultrasound next year .

  • @monamck4678
    @monamck46783 ай бұрын

    Hi Sarah! I just got diagnosed with microadenoma and I feel your frustration with healthcare! I was not taken seriously for years and now I’m dealing with a lot of problems and finally found someone who heard me. I applaud you for advocating for yourself! I hope you are doing well ❤

  • @sherryhubbard8612
    @sherryhubbard86124 ай бұрын

    I hate to ask but how did you manage hygiene after using the bathroom since you can't bend or twist.

  • @sherryhubbard8612
    @sherryhubbard86124 ай бұрын

    Also how did you get out of bed without assistance. Did you need a grab bar?

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis3 ай бұрын

    I adapted and found a position that worked. Also, I always had assistance getting out of bed. My mother helped me.

  • @subhankarroy9466
    @subhankarroy94664 ай бұрын

    Hello maam... Have you had any calcium deficiency after surgery..... I am getting calcium deficiency after surgery... I am very worried about it.

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis3 ай бұрын

    Nope!

  • @sarahmurphy-nf4yl
    @sarahmurphy-nf4yl24 күн бұрын

    Calcium defencey is usually when they removed your parathyroid also...dud they?? If they did they shoukd have put you on calcium tablets after that. Check with your surgeon or doctor if they removed your PARAthroid also.

  • @texasgoddess323
    @texasgoddess3235 ай бұрын

    Hi! I’m taking an extension cord and a heated blanket! I need to charge more than one item, so that feeds 3 cats with 1 bowl.😽

  • @michaels2208
    @michaels22085 ай бұрын

    Thank you for sharing your knowledge from this experience. 50 yo disabled vet getting fusion from an old injury like 15 years ago. I'm not ashamed to say I'm quite nervous of the recovery. I got some mental stuff going on and I'm just trying to get ready. I do appreciate you for sharing this. I'll make a list and go get some stuff. 2 weeks until surgery.

  • @MarkPolley
    @MarkPolley5 ай бұрын

    I'm 50 and just had my entire back fused up from the bottom up to the beginning of the T,s. My recommendations are these: 1.) Back scratcher (bamboo one from dollar tree). 2.) Some kind of device that helps you pick things up because you will be dropping everything! I keep the bamboo scratcher, lol. 3.) Something to wipe your arse, cause you won't be able to reach it any longer. Truthfully I have found that a swifter device that you normally use to clean the ceiling fan works great. Just use it without the long handle and remove the fluffy thing, then wrap toilet paper around the fork end 😉 4.) Get the back brace, you will need it for a while. 5.) Toilet with arms, I have mine over the regular toilet. 6.) A few people to help you, cause they will get tired of helping you fairly quickly! 7.) A thick plastic bag or silk pillow case to slide in and out of the car seat on. 8.) A TV tray to sit next to your LOW bed. 9.) A shower seat. 10.) A shower wand for your shower 11.) A plastic hanger, this will be needed to put your sweat pants on, trust me, very helpful. 12.) Things to do mentally, like video games, planning future house construction plans, anything to keep the mind occupied besides aggravating the wife and kids!😂 13.) A small backpack was very helpful but when I went to the hospital and after I got out of the hospital for carrying around all the drugs you're going to be on and clips pretty good to the walker with Caribbean clips. 14.) An extra pillow to go under your knees when you're sleeping or just laying down resting. I'm sure there's about a man other things I could tell you but I just can't think of them right now as I have to lay down cuz my back is killing me. Good luck.

  • @michaels2208
    @michaels22085 ай бұрын

    @@MarkPolley hey, thanks a lot for the list. I have a few things already because I've had it feel like I got struck by lightning a few times and needed them. I'm nervous but not overly so. I'm just hoping that I'll feel better at the end of all this.

  • @jan-lgarza5489
    @jan-lgarza54895 ай бұрын

    Had a biopsy in 2019 and supposedly it was ok, and then I got one done last week and it came back positive for cancer… waiting to go over everything tomorrow…

  • @mrbatdance
    @mrbatdanceАй бұрын

    Hope you are,feeling better today. Did you also get the iodine pill?

  • @jan-lgarza5489
    @jan-lgarza54895 ай бұрын

    Hi, I just got my results on my medical app and was diagnosed with papillary carcinoma as well. Waiting on the next steps… I’m scared :(

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis4 ай бұрын

    It is normal to feel scared, but put trust in your team of doctors! This is a common type of cancer, but it is also easily treatable. I had no idea I had cancer until the biopsy, and even after the surgery, I am doing great! Living life like normal. Hang in there ♥️

  • @sarahmurphy-nf4yl
    @sarahmurphy-nf4yl24 күн бұрын

    We're they able to tell which type of cancer you had from a FNA Fine needle biopsy?? Or was it another method. Please reply if you can because I had a fna and they never told me which cancer and I've refused surgery for 4 years because of stress of things happening in my life bit may need to address it soon but I was never told which type of cancer. Pleas reply if you can. Thank you.

  • @sallygreenshields4072
    @sallygreenshields40725 ай бұрын

    When did they put the catheter in

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis4 ай бұрын

    While I was asleep under anesthesia. I’m not sure if it was right away when I fell asleep or right before waking me up.

  • @sallygreenshields4072
    @sallygreenshields40725 ай бұрын

    Why do they do the iodine in the nose

  • @brunorosales7387
    @brunorosales73875 ай бұрын

    Hi i hope you're feeling better question do you sweat a lot or feeling hot all the time?

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis5 ай бұрын

    I feel quite the opposite! Cold hands and feet all the time. I usually only sweat a lot when anxious.

  • @brunorosales7387
    @brunorosales73875 ай бұрын

    @@SarahJohnsonScoliosis Hi sarah thanks for replying! Looks like a have a pituitary problem I got the mri and o need to go see the doctor but i been feeling hot and sweaty for over 16 years and no one has been able to find the problem or solution! So are you taking something for the anxiety sweat?

  • @user-xn7we8md6c
    @user-xn7we8md6c5 ай бұрын

    @@brunorosales7387 how about Vision Problems and or Dizziness ❓I have one a pituitary tumour also. I live in Vancouver Canada 🇨🇦 Where do u live❓ Are you getting medical help❓

  • @spirofarmaku6772
    @spirofarmaku67725 ай бұрын

    I have changed 3 endocrinologist and all were ignorant, they put no effort in diagnosis (i did with my research ) ,endocrine problems are hard to deal with and made my life quality pretty bad,of topic did you had any trouble sleeping at night or dry mouth cuz i have which is really disturbing

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis5 ай бұрын

    It does take awhile to find the right endocrinologist who will listen. I have to travel about an hour to the city to see my doctors, but it’s so worth it! I do not have trouble sleeping, but during the day I am very active both physically and mentally, so that wears me out by nighttime. I also do not have dry mouth. You might want to look into having a general blood work panel done to check your vitamin and mineral balance.

  • @birdmp7573
    @birdmp75736 ай бұрын

    dd= premie with heart and intestine surgery up til 2 yrs old. Then preteen age struggles mentally and physically. Did circle of dr's for years. By 15 already went thru menopause and has osteo. had mri no finding. then diagnosed with mosaic turners syndrome..now at 21 trying to get her acth, cortisol and prolactin levels down... another mri and more blood work. seems to never end. taking it all day by day and moment by moment. Thank you for this video. All are not alone.

  • @iSheree
    @iSheree6 ай бұрын

    Thank you for these videos. I have thyroid cancer, pcos and now after watching your channel I think I might have a pituitary gland issue. My cortisol is through the roof, I have vision problems, headaches, menstrual cycle problems, weight gain etc. I also have a ton of other health issues and disabilities but they aren’t relevant here. I just had surgery to remove my cochlear implant and now waiting to book an MRI. My neurologist thinks I have MS…. so if I get this brain MRI for my neurologist, hopefully they will mention a pituitary tumour if there is one. I hope you’re doing ok. ❤

  • @pulchritudinousbrainiac3424
    @pulchritudinousbrainiac34245 ай бұрын

    I have a similar story, my thyroid cancer surgery is in a couple of weeks but they found the tumor in the sella structure and into pituitary gland. I was having vertigo with nystagmus, headaches, eye pain, vision problems memory problems, etc...now seizures soooo, we shall see what's next next!

  • @kellyclaxtonjr.257
    @kellyclaxtonjr.2576 ай бұрын

    Is there any males here who have experienced this. My pituitary tumor was 6x4x4 in 2018 and today it is 8x9x8 very hog prolactin levels as well. Started on cabergolne teice a week today

  • @axelusul
    @axelusul6 ай бұрын

    Got a phone call after tests saying I have a 8mmx7mmx5mm microadenoma. That was 3 months ago, my appointment with the Endocrinologist is supposed to be end of this month. Like this young lady I have had serious other medical problems which ended my career and life as I knew it 25 years ago. I was diagnosed with severe Narcolepsy, I have been on up to 14 tablets a day, whilst trying 3 new drugs. Two of which nearly killed me, one was "GHB", to be drank 2x a night in which I nearly choked and the last a drug "Sunosi" I took on top of my normal meds. I was seriously ill but for weeks but sometimes you have to let them "bed in". Then I had an experience where I went cold, lost feeling in my extremities and felt like "I was failing". So I stopped the drug, longest 5 weeks of my life. My then soon to retire Doctor(old school) said the meds now will help to some extent but long term will cause more medical problems and shorten my life. LOL, I walked out of the Hospital like Neil Armstrong or like I had been knocked out by Mile Tyson. But he was right. The meds and the hypothalamus which is where Narcolepsy is caused by the destruction of the 40k cells creating the neurotransmitter hypocretin, just so happens to be attached and interacts directly with the pituatry gland.

  • @aaronphelps2008
    @aaronphelps2008Ай бұрын

    I have a macro. Hormones were so low that Endocrinologist was surprised I could function at all ( March).

  • @sarahmurphy-nf4yl
    @sarahmurphy-nf4yl24 күн бұрын

    ​@@axelusulall meds have side effects. Your doctor old school was right about the. Donyour own research also. Hope you're well now 🙌

  • @axelusul
    @axelusul24 күн бұрын

    ​@@sarahmurphy-nf4ylHi Sarah, hope you are well too. I am using some gel you rub in to your upper arms LOL. I am in kind of "battle mode" for 3 months my mother who was recently widowed had a fall broke her neck in 3 places, had a virus and Pericarditis, then caught Pneumonia and Noro Virus in hospital. She was in for 2 months. Luckily I found her got her to hospital quick. I am winging it at the moment, got an MRI coming up. Hopefully the lump is not growing too quickly. The Doctor I spoke to said he has only had to operate 3 times?🤔, plus he said he would only remove it until it got to the size of a golf ball. I don't know whether to take him seriously, been just about holding on sorting my mother out. Only me and mother a widdow and no siblings to help. So have not had time to look into it. Only thing I can say is sleeping more and eye sight is deteriorating which is a little worrying. Circumstances have been critically dire but had to slap myself and get on with things for my mothers sake. It is my turn to look after her and get her back to health. Then on Friday after a scan found a lump in her gall bladder , surgeons said she is too weak for an operation. So will be looking to try to get her better for the next appointment in 6 weeks. Just got to roll with the punches I guess, plus live for today. You take care, sorry for the essay, didn't really process my situation until read over this reply. You could not make it up, but strangely up beat. Thanks for the reply

  • @lewissherman8689
    @lewissherman86896 ай бұрын

    Two yrs ago .ri found 8mm tumor or syst on Pit gland. NO symptoms as yet . Do not assume too much, Incidentaltumor? at least until 3rd or 4th mri. Dr mention,"incide t

  • @nobatime
    @nobatime6 ай бұрын

    Getting ready for my surgery and wondered what I should take….glad I checked KZread, and found your video! Excellent information. Thank you for posting this! Hope you are well, and happy!!

  • @sandrainontario6710
    @sandrainontario67106 ай бұрын

    How in the world did you do a puzzle? They hurt my back now. My surgery is scheduled for January 19th

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis5 ай бұрын

    It depends on where you do the puzzle. You could do it standing or I believe I did a small one in bed on a lap desk. Best of luck to you with your surgery!

  • @bryancool426
    @bryancool4266 ай бұрын

    This macro-adenoma keeps coming back to me these years. Will have another surgery two months later.

  • @kadianwelsh326
    @kadianwelsh3266 ай бұрын

    It happen to me also ur r not alone in the

  • @dayanar23
    @dayanar236 ай бұрын

    Hi, I have exactly the same thing . Have you check if you have MTHFR ? I was prescribed cabergoline which is lowering my prolactin. I wanted the tumor out but according to the doctor is too small. So I am trying to find holistic alternative because the health care system makes me feel very frustrated .

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis5 ай бұрын

    No, I haven’t been checked for MTHFR, but I do have another genetic disorder, hemochromatosis.

  • @user-fd5rn6te7o
    @user-fd5rn6te7o3 ай бұрын

    Did you find a holistic route?

  • @dayanar23
    @dayanar233 ай бұрын

    Yes, working on that too. @@user-fd5rn6te7o

  • @user-bl6ld3wi2p
    @user-bl6ld3wi2p6 ай бұрын

    I am also sufferring papilary thiired carcinoma .before 6 month ago i take it radioactive idion ..after surgery .. then now what are follow up plz tell me

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis5 ай бұрын

    I get an ultrasound of my thyroid and bloodwork done yearly.

  • @subhankarroy9466
    @subhankarroy94664 ай бұрын

    @user-bl6ld3wi2p .....Have you had any calcium deficiency after surgery..... I am getting calcium deficiency after surgery... I am very worried about it.

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis2 ай бұрын

    No issues with calcium deficiency

  • @sarahmurphy-nf4yl
    @sarahmurphy-nf4yl24 күн бұрын

    ​@subhankarroy9466 Calcium deficiency is usually whrn they also removed your parathyroid. Then people have to take calcium supplements. Check this with uour doctor to know if they removed your parathyroid also??

  • @user-bl6ld3wi2p
    @user-bl6ld3wi2p7 ай бұрын

    Hello after surgery what is your followup plz tell me and do you ear all food

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis7 ай бұрын

    I am doing well! I will continue to get thyroid ultrasounds to make sure everything is fine. I am able to eat all foods and my voice returned to normal.

  • @53milviews
    @53milviews7 ай бұрын

    what were your side effects from the medication?

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis7 ай бұрын

    I was on such a low dose that I didn’t have any side effects. Slight fatigue the day after taking it, but that went away after getting used to it. I was on it for about two years and just stopped a few months ago.

  • @user-fd5rn6te7o
    @user-fd5rn6te7o3 ай бұрын

    Did your tumor disappear or did you have to do surgery to have it removed?

  • @53milviews
    @53milviews3 ай бұрын

    @@user-fd5rn6te7o most of the time medication is enough

  • @Livelovelaugh-2024
    @Livelovelaugh-20247 ай бұрын

    I did the same thing taking the pill that is supposed to forse a period. I didn't have a period for 9 months and it's still so irregular. I have a pituitary cyst/tumor. My testosterone level where 74 but are now down to 56. And my prolactin levels were only 24 so only 1 full point high. My sister has a pituitary tumor too.

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis7 ай бұрын

    So strange how your sister has one as well. I have an older sister, but I do not believe she has any issues with her cycle.

  • @tinmanlover1994
    @tinmanlover19947 ай бұрын

    Hi how did you go though 4 back operations for your scoliosis? My sister only had 1 spine fusion? I myself have Scoliosis and it's not easy not going to do surgery yet but I'm in pain management to help with the chronic pain that it causes me. I have other health issues as well on top of Scoliosis so fusion isn't in the cards for along time

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis5 ай бұрын

    My other three surgeries were failures. The rods did not fuse properly to my spine which made the screws pull out and my rods broke as well.

  • @abrahamafram3378
    @abrahamafram33788 ай бұрын

    Hello Sarah, how are you now How is your back now I wonder how you feel now. Has your back improved I love you so much ❤❤❤❤🌹🌹🌹🌹

  • @SarahJohnsonScoliosis
    @SarahJohnsonScoliosis5 ай бұрын

    I’m doing very well now! Living as normal of a life as possible (: Thank you for checking in ❤️