Hey Tracy,
Welcome to Benâs Friends.
Firstly I have to agree with every thing Gabby states above, ESPECIALLY
And if itâs any conciliation Iâm weird too. I donât fit nice and neatly into their âmedical boxesâ, my symptoms are not ânormalâ and Drâs often donât like that. I often joke "Iâve been put in the âToo Hardâ basket, which just makes me a basket case (as if we didnât already know that ) " And it is said light-heartedly Haha. But the reality of living it, that ainât so funny at all.
Some of the medicos are of the opinion that if the tonsil is less than a certain length then your symptoms will be minimal, but this is not always the case. Some report a large tonsil with minimal symptoms and yet others have a smaller tonsil with no end of issues.
I have had a few neurosurgical procedures and my eyes are like my barometer and I have had no end of issues. I donât get âround panesâ but squiggly lines and bits missing in my vision. The pressure behind my eyes is often immense. I queried why? The medicos didnât much like me questioning. First they said it was a dental issue, so I had all of my top teeth removed. It wasnât my teeth. Then the said it was muscle tension, so I bought a hydrotherapy spa bath, itâs nice and relaxed me, but didnât resolve my issue. I tried acupuncture, but without success. Then they said it was stress related. Past stress, present stress and future stress, seems I was storing all of this stress up in the muscles in my neck shoulders and face. So I had multiple treatments of Botox, I had a real sexy, wrinkle-free neck, but I was still having issues. Then they came out with the line âOhh, you just have a low tolerance to painâŚâ I wanted to SCREAM. They have no clue how bad neurological pain can be. When you hurt your arm it affects your arm, but when itâs your brain it affects EVERYTHING.
From what I have found, one of the best ways to deal with this can be to go through a process of elimination. If a dr suggests a treatment, a solution, then trial it. Try every suggestion made and document it all, eliminate every treatment option possible. One of them might just work, but by eliminating each option (and documenting it) you are following through with options and by documenting it, you have reports and paperwork to prove it. This can prevent differing drâs sending you for the same scans or the same treatments.
Having multiple conditions and multiple specializations can make things much more difficult, as you are finding having both chiari and arthritis. It can be easy for specialists to play off against each other and yes, Iâve had to play those games before. You have every right to ask for a 2nd,3rd or 4th opinion. Ophthalmologists often refer back to the primary report. If the primary report (neuro) states the chiari is minimal, it maybe discredited as a cause without consideration by the ophthalmologist.
Best of luck with it all
Merl from the Modsupport Team