Losing all hope

I had my decompression surgery June 2020. It’s been almost a year since surgery and things have only seemed to be getting worse. My legs shake and buckle under me when I try to walk. I have to use a cane or walker because I look like a baby learning how to walk. I have migraines at least 5 times a week. I have nausea, vertigo, blurry vision. My eyes swell when I get migraines. I had a mri done in October of my lower spine and they found two large talov cyst that no surgeon will touch. I’m completely depressed with loads of anxiety. I can’t seem to do anything anymore. I just wish I could feel normal!! Just 1 day without being in pain!!
I also have large lumps in both my armpits! Losing my hair! Bruise super easy! Acne galore, which I never had before. Had a hysterectomy in 2017 due to pelvic congestion syndrome. I don’t feel like a real woman anymore!! I just want to give up!! I’ve just lost all hope of ever getting better. I feel like things would be easier for my family if I wasn’t here anymore. 35 years old, and I feel like I’m 100. Sorry for venting. Just really needed to get this off my chest. :purple_heart:

Hey Nikolle,
Pain is a NASTY beast and because you have multiple, (seemingly) unrelated symptoms, trying to pinpoint a cause/relation can be extremely difficult to near on impossible. For example, having a hysterectomy, you’d be seeing a gynaecologist, but I doubt a gyno would have much direct information regarding Chiari. Although they are differing conditions, with differing treatments, any treatment needs to take the ‘Whole Person’ into consideration. It sounds to me that this is NOT what is happening. Each symptom seems to looked at individually.

Now, I’m in Australia and here we GP’s (General Practitioners), then we have physicians, then we have specialists, then specialist surgeons. GP’s are the same as your PCP’s, they can be good for your normal medical needs and can make referrals direct to specialists if they know which specialists are required. BUT, for those of us with complex needs or multiple conditions we may need multiple specializations and this can become confusing for all involved.
A physicians role is as an investigator. They take the ‘Whole Person’ into consideration rather than a specific condition, they can make referrals to all of the relevant specializations and collate all of the reports/scans/information to make a more wholistic diagnosis. Sometimes our information can be taken as anecdotal or hearsay, but if that same information is provided by another medical professional it can be more readily accepted. It sounds to me like you need an investigator or a physician .

I have to say here, I’m no Dr, but have you seen an endocrinologist at all. A hysterectomy can upset all sorts of hormone levels, those lumps in your armpits ‘could’ be swollen glands and often that can be a sign of an issue with your endocrine system. Migraines, bruising and acne can all be associated with the endocrine issues. A large component of the endocrine system is the pituitary gland in the brain and chiari, along with it’s treatment, can obviously have an impact on the brain and this can flow through to the pituitary gland. So, as you can see, it can be all related.

I would strongly suggest you try and find a physician or a medical investigator to look into your own situation as a whole.

Hope it helps
Merl from the Modsupport Team

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Thank you so much for your support and advice! I will talk to my PCP once I see him again. I am getting a full blood panel done soon.:purple_heart:

So sorry to hear this. You are in my prayers for a recovery!
Jim

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I don’t feel like a real woman either, cause iam a guy, but everything else I can relate with. I got lump in a armpit caused by body getting rid of surgery related drug. You should definitely get those checked out!
Fifteen years post surgery I still have pain numbness and vertigo. I still do everything I did, just less of the hard stuff. One thing I have learned in fifteen years is that sleep is medicine

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Hi Nikolle, I had my decompression surgery in 2008 and I’m a 63 year old male… recovery can be a long and painful process and in my case the surgery didnt help all of my symptoms…the thing is,we are zipperheads and we have pain and setbacks…whats awesome about us is we can and we will triumph , maybe not completely but still we will win… remember chiari doesnt define you its just a small part of the fabulous person you are…believe in yourself . My pain is still with me and its a constant battle but always remember you’re a beautiful woman who just has a bad condition…that doesn’t change the fact you are that beautiful person !

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Hey, Nikolle,
I got tears in my eyes reading your account. I remember those days - just longing for a minute break from chronic pain. For 10 years, I lived that way before diagnosed with Chiaris. Fortunately, my decompression surgery relieved about 70% of my agonies. But, there is permanent damage to the Central Nervous System that I will deal with the rest of my life.
One symptom that has tormented me is that Chiaris damaged some nerves badly enough that even though I’ve long healed from the decompression surgery (2012), there are certain nerves that still are saying “ouch!”. I call it ‘fake pain,’ because the pain is excruciating, but nothing is wrong. For example, I had lasik surgery done on one eye, and the corneal cut caused excruciating eye pain - which wasn’t supposed to happen. Then, I got a cavity in my upper left molar, and even after being filled, the pain was totally unbearable on the left side of my jaw.
What finally snuffed this ‘fake pain’ were small doses of tricyclic antidepressants. For me, nortriptyline or amitriptyline have worked perfect. Most people take doses of 75mg or so, but all I need to snuff the pain is 3-5 mg. Some people do well with gabapentin to block nerve pain, but my liver couldn’t tolerate gabapentin. With such small doses, I have minimal side effects, and the ones I have are much more tolerable than the fake pain. Tricyclics also help a lot with anxiety. I remember before my surgery, the only emotion my brain could concoct was terror and anxiety. I think that’s normal when there is brain damage going on. But, amitriptyline has done a wonderful job snuffing out that part of Chiari misery.

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Sorry for your pain never give up keep fighting through it maybe special doctor help with pain , maybe therapy , leg excercise help with legs maybe , I had deal with vertigo maybe it will be gone with you to., everything else you dealing with keep fighting look for someone talk to who will listen.,

I’m not on here a lot do my best help other people I don’t have answers for of Chiari they have for what I live with if not for this site I never would have known there are five different types of Chiari a person could get I can help with little but other people on here are better helpful than. I am get well soon

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I am sorry you are having so many symptoms. I have a few ideas that you may want to consider.

Maybe going for physical therapy will help to improve your ability to walk. Exercises for strengthening and stretching and balance and coordination exercises may improve your ability to ambulate with or without assistive device. The exercises will help your deconditioned body. If you have a hard time tolerating walking/exercises on land, you may find exercising in a pool more tolerable. There are physical therapy clinics that offer aquatic therapy.

Seeing an integrative or functional medicine doctor/practitioner (medical specialist who have a traditional Western medical degree but also are specialized in alternative natural treatments) may be a good way to seeing what can be done naturally to decrease inflammation in the body before starting on prescribed medications. In terms of my own experience with an integrative specialist, I have had good experience. I learned how to decrease pain and inflammation in my body naturally through changes in my diet and taking natural supplements. Of course my doctor did not rule out using prescribed meds but I personally wanted to try a natural route first. My hormonal and sugar levels have been controlled, inflammatory markers have decreased in my body, and my autoimmune condition has improved.

Don’t give up hope. Your family needs you. Just do the best you can to try to find what will work best for you in terms of your treatment.

Praying that you will find help soon and be on the road to recovery!

God bless you!

Sarah

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Hi there. I am not on this site much, but I saw your post and had to offer my support. What I have learned on my long, troubling journey with a chronic condition is to Never give up and to Never lose hope. You are way too young to feel all is lost. I am here to tell you all is Not lost. You have many years in front of you that you can fill with joy and happiness. Take a deep breath right now and remind yourself, “this too shall pass” and then take the steps to move forward to feeling better. Many people replied to your post with some very good ideas. I would like to add just a few other simple ideas. Regarding your leg weakness, I suppose you are working with a pt. Be diligent about following those exercises. The more movement, the better for your body. Just take it slow. Regarding your migraines, I have found great success in following a migraine diet. I read the Heal your Headache book and was able to identify my trigger foods and eliminate them from my diet. This same book enlightened me to other migraine triggers like stress, not enough sleep, and anxiety. I do feel better when I do relaxation exercises to curtail my stress and anxiety. I do this everyday. But I will admit, I got a lot of relief from anxiety and consequent chronic dizziness from Lexapro. Ask your doctor if you are a good candidate for an SSRI. There are many different kinds. See which one your doctor thinks is right for you. I did not want to take Lexapro at first, but I relented out of desperation. It has helped me tremendously. Also, I know how depressing and lonely a chronic condition can be. You need support. Someone who you can vent to and who will listen. A therapist can be another great tool on your road to better health. Many insurance companies will cover the cost too. Finally, you may be able lessen your vertigo attacks by working with a vestibular therapist. She can give you exercises to do at home to build up your vestibular system. Although, I would save the vestibular therapy for last. First, you need to start feeling a bit better before you tackle those exercises as they are a bit difficult. Ok, I hope I have given you some options. Remember, there is always a solution! You will have to put in the work and do whatever it takes, but you will find it. Have faith. Sending you love, prayers and positivity. :pray:

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I am so moved by your post I will just offer my thoughts and prayers and please please look for support and help from friends and family