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ajgray
@ajgray

Posts: 12
Joined: Oct 17, 2016

Chiari Malformation type1, Addison's Disease, Steroid-induced diabetes

Posted by @ajgray, Oct 19, 2016

I’m just curious if anyone else has these diagnoses.. if so where is a good place to have surgery. Mayo turned me done. Stating that I have to many health problems. I have more than what’s listed above.. I’ve even lost my job as a nurse because it’s effective my vision and memory so bad..

REPLY

Hi ajgray,
I’m sorry to hear that you were not able to seek treatment at Mayo Clinic. Our physician experts have likely reviewed your case with their colleagues both times. Their review lead them to determine that Mayo Clinic cannot offer any further treatment for you at this time. It is our goal to provide the best care each patient needs, however we do not want to have you incur additional costs for evaluation or travel if we do not feel we can offer care that is different from what you’re already receiving.

That said, let’s connect you with other member here on Mayo Clinic Connect. Please meet @donnak69 @smann68 @david33 @maidmarion @alicein_wonderland @loretta61 @sotired @azslp @jasonkwellls Perhaps they can share their experiences with surgery for Chiari Malformation type 1, and experiences with multiple chronic conditions such as Addison’s disease and diabetes.
Here are a few ongoing discussions that you may wish to join:
– Chiari Malformation type 1 http://mayocl.in/2emYs3Z
– Chemically induced diabetes http://mayocl.in/2enIDFJ
– Adrenal insufficiency http://mayocl.in/2eV7kNs

I also recommend you follow the Diabetes and Endocrine System group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/
I’m so sorry to hear that the effects of your conditions forced you into early retirement. What type of nursing do you specialize in?

I didn’t want to retire I still want to work I want to be my old self again I hate this new person and I became a look in the mirror I don’t see myself my face is a lot bigger I can’t go run and do stuff with my kids anymore last year at this time football I would run every night it’s also getting ready for football that he was the fastest kid out there on the field this year he would ask if I go with him I had to say no he’s 13 and I had to turn him down to run with him, whenever I’ve always thought that physical activity is good for all my kids and myself..
I just want my old self back ..my memory is not very good I can walk into a room and then wonder why I even walked into it what I was looking for. I have headaches every single morning I wake up in the head feeling like it’s being crushed and ringing in my book both my ears and dizziness makes you not want to get out of bed but I do have three kids that need to make it to school and got to get up and got to get dressed to help them through their day.. I was actually fired from my job because I didn’t do as good of a job as I usually do, I was really sharp at remembering everything .I could Work with cancer and hematology with Dr. Ali I would know what he was going to order before he even came out of the room and have it ordered and work on the pre-CERT and that way I could schedule that person before they left the room while I was in there doing their blood draws .. they told me I was let go for having to miss too much work for medical reasons even though I always had after visit summary an excuse note from the doctor and it was close enough to go to work don’t leave go to my appointment and I go back to work I didn’t play hooky or anything like that I just very discouraging I Krylon feel like I’m not worth anything anymore, and I know they want to do anything I would love to have Surgery

I have had many symptoms of chiari most of my life but just became aware of it in just the last few months of what was causing many of my issues. I had an mri that showed a 10mm “beak like” and a 6mm. I waited for three months to see a neurologist who was rude and dismissive. Now I am in the process of another referral to hopefully someone that has seen and dealt with this before. I too have become a different woman than I used to be. I used to have my grandson for week long stays, now I can barely handle a weekend. I miss a lot of work. I am explosive angry sometimes and have little to no patience anymore. I have lost friends over it and family is too distant to really care. I have terrible memory now, headaches, back aches, my whole body hurts sometimes. Incontinence, irritable bowel, my heart, tingling in my fingers, numbness in my toes. Gagging when I try to swallow to the point that I have to “work” the fluid down. Ears ringing,dizziness. I hate what it is doing but surgery scares me I think even more. Depression is part of this crazy chiari train we are on. I keep telling myself I am worth more this pain, I am not going to let it break me. Good luck. It really is nice to have someone to talk to.

Its tuff to grieve over your old self, especially when you are always swollen from the prednisone & cortef, I have to take soo many pills, & yes it gets harder to swallow.. I take trazodone 150, before I go to bed.. but for some reason I’m always waking up at night..I’m currently also seeing a psychiatrist that my neurologist referred me to, to learn how to coup with the loss of the old me.. I’m not certain it helps but at least I’ve got someone to tell exactly how I feel about it all .. I lost my job, for missing to much work.. it makes me feel worthless.. I also get made at times for nothing.. especially when I’ve got a migraine and my kids are loud., I’ve met with a law firm to do my disability claim. I’d probably forget to much to manage it on my own as sad as that sounds .. but hopefully you’ll find the right Dr. You could search the Healthgrades website, you can put in the specific Dx & treatments the different Drs do and read reviews, it may help some., good luck

@luckypeppersi

I have had many symptoms of chiari most of my life but just became aware of it in just the last few months of what was causing many of my issues. I had an mri that showed a 10mm “beak like” and a 6mm. I waited for three months to see a neurologist who was rude and dismissive. Now I am in the process of another referral to hopefully someone that has seen and dealt with this before. I too have become a different woman than I used to be. I used to have my grandson for week long stays, now I can barely handle a weekend. I miss a lot of work. I am explosive angry sometimes and have little to no patience anymore. I have lost friends over it and family is too distant to really care. I have terrible memory now, headaches, back aches, my whole body hurts sometimes. Incontinence, irritable bowel, my heart, tingling in my fingers, numbness in my toes. Gagging when I try to swallow to the point that I have to “work” the fluid down. Ears ringing,dizziness. I hate what it is doing but surgery scares me I think even more. Depression is part of this crazy chiari train we are on. I keep telling myself I am worth more this pain, I am not going to let it break me. Good luck. It really is nice to have someone to talk to.

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Everything that you said is true all the symptoms except even with Addison’s it makes me even more tired because I have to take steroids to just have energy to get through. This horrible the pain is horrible and I don’t think anybody understands my endocrinologist but he knows anything really about either one to be honest my rheumatologist she is excellent and she’s trying to find me a surgeon that will actually work on me because my tonsils are at 9.5 and it’s flattening my spinal cord up It is pushing against myspinal cord my C5 and C6 it which makes my hands have no feeling but I still have tremors, I have lumps are I always have pain I feel like something is pulling down my shoulders at all times I wake up with headaches ringing in my ears I cannot get rid of..life is miserable living like this.. some days I think it would be better to just to end it I don’t want my kids to see me go crazy I’m totally losing my memory I had blurred vision like it’s horrible very horrible and I hate it I cry all the time I’m on medication for depression but it’s not helping I see you psychiatrist I don’t think it’s helping.. I don’t feel like anybody that I go to understand what it is but honestly don’t know but emergency room where they seem to think that I’m just seeking pain medicine or something but I’m not I’m really hurt and Im even Dx with chronic pain syndrome chronic pain also but I don’t take any . I don’t want medication it’s gonna mess with my head right now my head is so messed with it I don’t even know what to do

@luckypeppersi

I have had many symptoms of chiari most of my life but just became aware of it in just the last few months of what was causing many of my issues. I had an mri that showed a 10mm “beak like” and a 6mm. I waited for three months to see a neurologist who was rude and dismissive. Now I am in the process of another referral to hopefully someone that has seen and dealt with this before. I too have become a different woman than I used to be. I used to have my grandson for week long stays, now I can barely handle a weekend. I miss a lot of work. I am explosive angry sometimes and have little to no patience anymore. I have lost friends over it and family is too distant to really care. I have terrible memory now, headaches, back aches, my whole body hurts sometimes. Incontinence, irritable bowel, my heart, tingling in my fingers, numbness in my toes. Gagging when I try to swallow to the point that I have to “work” the fluid down. Ears ringing,dizziness. I hate what it is doing but surgery scares me I think even more. Depression is part of this crazy chiari train we are on. I keep telling myself I am worth more this pain, I am not going to let it break me. Good luck. It really is nice to have someone to talk to.

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I honestly don’t know about Addison’s, but I do know about the pain you are going threw. I went to a surgeon, and he helped me a great deal. I only made one mistake and I should have listened to my wife, and that was getting a shunt put in,, then two weeks later I had pain, and lots of it, some of the symptoms made me want to crawl in a ball and give up. The hospitals thought the same thing, (Pain Medicine) which I turned down each and every time I went. Then of course two weeks later I was admitted in Pittsburgh for two weeks and they couldn’t find anything wrong and they sent me home, 3 days at home was very bad and I was admitted back to Pitts where I had to get the shunt removed cause it got infected. (So I won’t go threw that again) The doctor put me on water pills called, {Acetazolamide}. Its working with the spinal fluid pressure, so I don’t have the headaches anymore like I used to.
I still have the numbness on my left side, and left chest pain, but the ruled out my heart and they will not check if I have a ripped muscle. Please don’t give up, you can always contact me, and I will help you as much as I can, also if you want my doctors name and address, ask and I will gladly give you his name.
Hang in there, don’t give up, there is help….and I will try my best to help you.

@ajgray

Its tuff to grieve over your old self, especially when you are always swollen from the prednisone & cortef, I have to take soo many pills, & yes it gets harder to swallow.. I take trazodone 150, before I go to bed.. but for some reason I’m always waking up at night..I’m currently also seeing a psychiatrist that my neurologist referred me to, to learn how to coup with the loss of the old me.. I’m not certain it helps but at least I’ve got someone to tell exactly how I feel about it all .. I lost my job, for missing to much work.. it makes me feel worthless.. I also get made at times for nothing.. especially when I’ve got a migraine and my kids are loud., I’ve met with a law firm to do my disability claim. I’d probably forget to much to manage it on my own as sad as that sounds .. but hopefully you’ll find the right Dr. You could search the Healthgrades website, you can put in the specific Dx & treatments the different Drs do and read reviews, it may help some., good luck

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I know all about depression, and at one time I tried to hide it, I didn’t want to feel like a coward in front of my wife and daughter. It was okay for them to get cancelling for their depression, but we as men want to be strong for our families, we don’t want to be weak in front of them. Until I got into a heated argument with my daughter when I realized that I needed help before I hurt someone or them. I feel better taking to someone, even though it’s hard to feel like a failure in front of my wife and child, and I’m not aloud to work, I wish I could go back but no one wants to hire a person who fell 15 feet, got on workers comp, and went threw 3 brain surgeries.
But I had depression before that, and I didn’t do anything to get help, I just bottled it all up, and what started mine, was when we lost our trailer and all our dogs and cats and our so-called friends stood and watched, and did nothing to let them out. (So as you can see I’m still a lot angry over that, but I’m working on getting better)
Some therapist do help, only if they ask questions, but if they sit there and don’t say anything to help you cope, then it’s a wasted trip. Do a lot of research, and hopefully you will find the right one for the specific cause of the depression.There are a million causes of depression, but only one knows how to treat those and not all therapist has the answer. I hope you find the right therapist for the answer you are seeking.

@ajgray

Its tuff to grieve over your old self, especially when you are always swollen from the prednisone & cortef, I have to take soo many pills, & yes it gets harder to swallow.. I take trazodone 150, before I go to bed.. but for some reason I’m always waking up at night..I’m currently also seeing a psychiatrist that my neurologist referred me to, to learn how to coup with the loss of the old me.. I’m not certain it helps but at least I’ve got someone to tell exactly how I feel about it all .. I lost my job, for missing to much work.. it makes me feel worthless.. I also get made at times for nothing.. especially when I’ve got a migraine and my kids are loud., I’ve met with a law firm to do my disability claim. I’d probably forget to much to manage it on my own as sad as that sounds .. but hopefully you’ll find the right Dr. You could search the Healthgrades website, you can put in the specific Dx & treatments the different Drs do and read reviews, it may help some., good luck

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Thank you David! This is such an important story to share. Do you continue with counselling now too?

I was treated at the Mayo Clinic and had a Pituitary Adenoma (tumor) removed that was secreting ACTH and causing Cushings due to 6x more cortisol than normal being secreted at all times. After the tumor was removed the cortisol dropped to 1 and I had Addison’s disease. They had scooped all the cells from my posterior pituitary. They gave me IV solu-Medrol in the hospital and when I was released the put me on 20mg tapered dosage of hydrocortisone (10 2x per day- 1 at 8am and 1 at 2pm) the timing of the dosage was very important. Over the course of 3 months, I tapered off completely and had severe joint and connective tissue pain for 6 months, then I started testosterone replacement therapy with medical marijuana and tapered off of Prozac, adderrall, and vyvanse. 2 months after tapering off of the psycho Meds the connective tissue pain, mood swings and headaches went away. I limited my caffeine intake to 1 cup of coffee and half a Zyrtec D (antihistamine-stimulant) with double dose of Vitamin B complex and that took care of everything. I tapered off the Marijuana over about a month and then it Took me 3 months of diet and exercise to get to a manageable weight and lose about 20lbs. I can’t thank the Mayo Clinic enough. What an incredible experience I will never forget, so efficient, so welcoming, so precise!

I know I really wish that that they would try to treat me . I tried to get in with endocrinologist at Mayo and they turned me down saying I have to many problems and they didn’t think they can treat me any better than what I’m getting here but I’m not really getting treated here I take the same medicine every day that’s horrible effects on me I take Or Cortisone and prednisone I also I’m on the depression medicine stuff like that because I want me back I want to be the person I was before I hate looking in the mirror I don’t like to look like this. and I have aches and pains all over and only dad take his ibuprofen and that’s all they’ve giving me

Hello all,

29Y.O. Male
Type 1 Malformation Diagnosed in 2005
Severely Aggravated with a Motor Vec accident back in march of 2016

I guess ill start recent and work to the old.

I just recently had surgery for Chirai 1 type Malformation on 12/6/16, I had a standard Decompression preformed in Las Vegas by the crudest most arrogant “Surgeon”/man I have ever met.

With that Said the man is a god with his hands apparently.

I was released from Surgery on the 7th of Dec 2016 after the “most rapid recovery the hospital has seen” (this was repeatedly told to me by 5-6 Doctors/staff)

On the 16th of Dec 2016 I had my stapes removed and was given a “it looks perfect” But yet couldn’t feel any of the stapes being removed but the last one that got “Stuck” and had to be forcedly removed by his S.A.

So Imma give you a basic breakdown of my current “complications” If you wouldn’t mind reading this and if anything is “serious enough to Seek Attention let me know please”

With that said, It isn’t without complications. I now am having issues swallowing it feeling like there’s always something caught in my throat but when I go to do the act I have no issues. I’m also having a “stretching feeling at the Top of the base of my skull about 6cm above from the sight of the Dura area that was Operated on I have about 75% of the muscular movement back in my neck now. and had Small Bugle at the base of the skull that I was unaware of until I accidently “popped” it doing my Iso Exercises (neck retention/mobility) I haven’t had pain or anything sense or any cause for alarm from it. I cant seam to Stay Awake past like 7pm… anymore when before I was a bit of an insomniac.

I don’t have any other heath Concerns Everything else read fine in my workup and yada yada… do I need to worry about the above what do everyone think?

Liked by scotthinojosa

Hi Scott, welcome to Connect.
If you want to see all your posts, simply click on your name @scotthinojosa and you will see all your activity. You’ve posted in the right place to connect with others who have experience with Chiari Malformation type 1 Please meet @ajgray @maidmarion @david33 and @luckypeppersi

Scott, What explanation or suggestions has your care team suggested for the complications you mention?

Said that its all normal that there’s no need for alarm, and when I asked if he can look down my throat he laughed.

I’m scheduled to see the surgeon again in a month for a follow up hopefully they all dissipate by then.

the pop I felt was probably fluid build up that I forced to release. I haven’t had one sense and I have checked the area more thoroughly daily incase there’s a return (as I was suggested by my Surgeon’s PA).

Still having some issues swallowing but was told that’s completely normal that I just had a tube down my throat 2 weeks ago and its swollen still and sore.
I have an issue with this part…….

I’ve done tubes in the field when I served…. and I have never heard of someone having the feeling of having something caught in there throat like this lasting as long as it has Its quite maddening to be honest.

so imma wait until the appointment I guess and go from there…

I delt with a neurologist for the last six months , Dr M. I honestly believe that she just thought o was mental. Instead of helping with my headache she thought my depression was worse a d sent me to a. aPRN who really just said the same thing over and over, about what a hard battle ahead of me . That I’m going through a lot.. hmm I’m aware of this already., she did put my on seized medicine for my tremors priced I definitely had eye tremors And blurred Vision but nothing about my pain. Anyway I met a new neurologist and told her about everything.. she was great and honest, stated she didn’t specialize in Chiari but referred me to a neurosurgeon and set my apt up for 1/17/17. So fast and leaving all the bs out..

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