Hello - I had an SAH and clipping 15 yes ago. First three years I was basically fine then bam - hit with body aches , fatigue , and headaches . I went to several specialists and they ran several tests and found nothing ! My theory (I’m not a doc obviously) is that once the brain is tinkered with nothing ever feels the same . Anyone have similar issues ? What’s puzzling me the most is the fact that these symptoms occurred 3 years AFTER the surgery. Any insight would be great!
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Good Morning @momof21, I’m not sure…I had those symptoms following rupture and for several years after. When I started getting weird symptoms, my PCP started a road of tests that ended up with me going to a Rheumatologist. One thing I always do when I start getting odd symptoms is to check my medication online for the side effects, even the minor ones. I go to the source of the medication, the company that makes it, sorry can’t remember what it’s called this am. Sometimes, we just have to keep hammering at our PCP so we don’t end up falling in the cracks and sometimes we just need luck on our side to find the right doctor who knows what’s going on.
Best of luck,
Moltroub
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Almost the same here. Thought I was doing a-ok with other issues and a little over 2 years later I am just falling apart. I decided yesterday I am through with the doctors. It’s like nobody knows what to do with me so one sends me to another. I have now gone full circle and I am heading back to my neurologist in 2 weeks.
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I had a ruptured aneurysm 7 years ago followed by a coiling and flow diversion stent placed in my brain. Took a few years of physical therapy to gain back my walking and writing abilities. Ever since the aneurysm I have suffered with extreme fatigue, constant pain in my legs and buttocks. I also suffer with depression and anxiety. No one has any answers for this so I do the best I can and have learned to live with the pain. I am just grateful to be alive. Has anyone else experienced these same symptoms?
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I too want to connect all the dots and make everything be related, but I’m starting to think that it’s not all necessarily related? I’ve recently learned about Hypermobility and Ehlers-Danlos syndrome, and while I can’t find a doc yet to officially diagnose me, I can figure on my own that I have a lot of the symptoms. Knowing that opens a new can of worms, especially combined with the knowledge that I have the MTHFR gene variant for A1298C, two copies even. And before learning that, I figured out mostly on my own that I have iron deficiency. All of these things coming to light years after my annie battle may in fact be unrelated, or just related indirectly. Like maybe the Annie was because of the EDS (if I do have it of course), but other issues I’m having are solely from the EDS and/or other genetic problems. Once you have one major issue, it’s hard not to think that anything else is directly tied to it, and docs will do the same thing even. But if the docs can’t find a correlation to the Annie, then it’s time to find another correlation and get on a new path. And that’s scary too because who wants to fight a new battle? There’s a lot of things that could be happening to us, and they may not in fact be tied to our annies. Just a thought to share, and I hope everyone remembers the golden rule of health care - YOU are your own BEST advocate!! I haven’t found a doc yet that does what I think they should do in terms of ferreting out my problems, so I know what it feels like. I’ve been going in doctor circles too. It’s maddening and disheartening to put it mildly. Keep going my friends - everyone deserves to feel better and get answers and be able to LIVE, and not just barely survive. And unfortunately it’s up to each of you to keep fighting, alone sometimes, until you get what you are paying for!
I sometimes form hypotheses and share them with the doctor I’m seeing. I receive various answers on my queries. Some times they tell me I’m going down the wrong road with my guess and why, sometimes they think it’s an interesting train of thought, sometimes they simply say “I don’t know”. Because specialties are so specific, I think it’s harder for us to find the one we need, almost as hard as it is for the referring doctor to send us. I have found that I need to listen carefully to the specialist I’m seeing for a conundrum issue as they may suggest another specialist. They usually don’t put it in their notes or tell my PCP. If I remember to tell my PCP, she will call the specialist and find out, then do the referral.
All the best,
Moltroub