Hello Everyone,
Hope all of you are doing as well as you can be for this day and that tomorrow will be better, especially for those who are having a rough day - physically, emotionally or relationally - know that you are loved and are AWESOME!!
I was wondering if anyone has experienced any issue related to the Pituitary Gland and hormonal changes, etc since having the decompression surgery.
Along w/ my chiari, I also had what's called ESS or Empty Sella Syndrome. This when the Pituitary Gland is flat instead of the normal small pea-sized shape as a result of the Chiari.
This is week 4 of having head to toe bone pain and last week I went to see my family physician who ordered 12 tests, including inflammatory markers like SED Rate, ANA and HLA B27. ANA was neg, SED Rate not back yet and HLA B27 is positive. My daughter was HLA positive last Fall as has an autoimmune (AI) disorder. We'll see how this goes.
They are testing my adrenals as well and everything we're looking into all rolls back to the pituitary. Since mine hasn't been "normal" for 43 years, what are the chances of mine decompressing and going back to normal, only to be going haywire because it was used to being flat for so long.
I know I need to check w/ my doc and I see the NS on July 6th for my 6 month post-op brain MRI and office visit.
My PCP is trying to get me in to see the same Rheumatologist as my daughter since she was told there could be a genetic link with HLA B27.
I'll keep all of you posted when I get more answers - just putting feelers out to see if I'm alone in this.
Blessings to all!
Empty Sella Syndrome has only an indirect relation to Chiari(as both are midine anomalies and may occur embryologically at the same time). there is no direct relation between the two(although both are common enough that there are many patients who have both).
You are going down the correct pathway with your PCP(and probably endocrinology as well).
The one issue in which both diagnoses are more commonly seen is idiopathic intracranial hypertension. When my post-op Chiari patients present with recurrent pain and empty sella, at a minimum, I get a dilated opthalmology examination and then consider an LP. Perhaps you can bring that up at your post-op visit.
Hope that thought helps a little!
Thanks Dr. Trumble!
I'll ask about endocrinology once all the bloodwork comes back.
I actually just saw my eye doc and had a battery of "imaging" studies done on both eyes because of having brain surgery. I had some post-op vision changes which have resolved but my close-up reading is a little fuzzy. I have better than 20/20, i think she said 20/15 but required a very low prescription (reading glasses only). She didn't detect any abnormalities within the eyes and my pressure is excellent. I will still check w/ my NS in July.
My concern is the amount of pain I have in my joints from head to toe. Night time and mornings are the worst but they hurt all day in all areas of my body (at least from the neck down - no HA's, no vision changes, but I am craving salt, constantly thirsty (more than normal), have constipation) - and all of this has been going on now for 4 weeks, just out of the blue. I call it 'bone pain' because I have no other way of describing it.
What are the chances that the pituitary is decompressing - is that even a possibility from a physiological standpoint post-chiari decompression? And if it is, can it be 'resetting' by releasing extra hormones, setting my body in a tailspin to then bring it under, what my PT called 'homeostasis?' They used the analogy of someone driving over a water hose w/ a vehicle. The tire impedes the flow of water and when it moves off the hose, there is a sudden gush of water from the build-up of pressure that it eventually goes back to the normal flow. Can the body actually do things like this?
On top of the brain tissue that was reduced by electrocautery, I had dense arachnoid scarring that had to be cut away during my surgery and when I came out - I lost a good bit of function with my right arm and leg - had to walk with a walker for 8 weeks. 4 weeks prior to this bone pain - I was running on the treadmill at PT and very thankful I can walk, write and type with no issues. The PT and staff have been amazing!
You are awesome and I thank you so much for your insight. I had no idea ESS & CM had no direct relation.
I'll keep you posted.