u/daltonwiththedogs

Hello everyone, this is my first time here and my understanding of TOS is very limited.

On Tuesday last week I had a stroke-like episode where I could not feel my right arm and loss consciousness several times. I went to the hospital but they only did a chest xray and an EKG at the time. Since then I have followed up with my primary care who ordered an MRI of my brain and spine, which came back normal. During the appointment I had with her, she did a basic neuro exam and noticed I am much weaker on my right side and have a cold and discolored right hand. She had mentioned thoracic outlet syndrome as a possibility, but I never really heard of it before.

Before my episode I had a two year history of neck and head pain and been diagnosed with cervicogenic headaches and occipital neuralgia. I have intermittent right sided weakness (both arm and leg), vision issues, severe brain fog and episodes of confusion, and non epileptic seizures as well. Since the episode the weakness has been much worse and I feel very off balance. I also had severe head and neck pain for about a week afterwards until my dr prescribed gabapentin. The gabapentin has brought the pain down significantly.

I’m just really at a loss for what to do. Has anybody with TOS experienced something like this before? All my tests keep coming back normal but I feel like something is really wrong. I have had a similar episode in the past but not nearly as bad. I’m worried it’s getting worse. My anxiety in general has been horrible after having such a scary episode and then starting a new medication with anxiety as a side effect. I’m just hoping somebody can share their experiences and let me know if you think we’re on the right track with TOS.

DAE have absolutely nobody in their life they can talk to about their pain? I’ve been diagnosed with cervicogenic headaches and occipital and trigeminal neuralgia. Last Tuesday I had an episode that has left me scared and in even more pain than usual. After seeing my doctor today, they are unsure if I have a pinched nerve or something pressing on an artery in my neck. They said it’s possible I had a small stroke.

I’m 27 and have been living with my mom, and I really appreciate her letting me live here rent free while I’m waiting on disability. But she doesn’t seem at all concerned about me or my health right now. Whenever I try to bring up how I’m feeling, she usually finds a way to blame me for it. I’m not exercising enough, I’m not drinking enough water. Today she told me I needed to eat a cup of beans a day in order to feel better (?).

I know it’s difficult for some people to understand what it’s like to be in pain 24/7. I just don’t know what I’m supposed to do when nobody is able to empathize or believe me. I feel very alone.

I’m still waiting to see my pcp to ask about a referral to an ENT specialist. Unfortunately the pain and head pressure have just became too much recently. I stopped by an urgent care clinic earlier this week because I could feel so much pressure in my right ear. Dr said there was fluid trapped behind my eardrum but no sign of infection. It feels like somebody has hit me in the head with a baseball bat, both in the back of the head and my right ear. She prescribed me a three day round of steroids that I’m almost done with and I only feel like it’s getting worse. The nausea and dizziness are also unbearable.

In case you don’t want to check my post history, I’ve had head and neck pain with neurological symptoms for about two years now. I often have fluid behind my right ear, but it never actually comes out. I’ve heard this isn’t that typical for cranial leaks, that the fluid is usually a constant drip, but I still worry about the possibility. Whatever is going on, it’s basically bed bound me.

Has anybody with a confirmed cranial leak had fluid that is trapped? Is there still a way they can sample it? I’m worried about having to wait another 4-6 months just to get in with a new specialist, this is driving me crazy. It’s getting harder and harder to take care of myself, the nausea is making it very difficult to eat. And for anyone that has had ongoing leaks for years, how do you do it? Is there something you’ve found that helps you get through, just day by day? TIA

I’m still having a lot of difficulty getting more testing done, so I’m wondering if this could be a better route to take. My symptoms originally started due to a “sinus infection”, and at the time I didn’t think much of it. I had fluid trapped in my right ear, dr gave me something for an infection. When I came back a few months later, the fluid was still there. I’ve continued to have pretty bad neurological symptoms and headaches since, and now I’m starting to wonder if it was a csf leak this whole time. I used a tool at home today to look into my ear and it looks super red with a yellowish fluid. This has been going on for two years and it always looks the same, even after sinus infection treatments. Is this at all typical with a leak? I had already suspected a leak due to the other symptoms I was having, just never made the connection somehow. Does anyone have any good experiences with ENT specialist? I’ve gone to multiple neurologists so far with no luck.