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

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!

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