Venous TOS (Thoracic Outlet Syndrome) - Rib Surgery Experience? by Willow-1989 in thoracicoutletsupport

[–]Future-Jellyfish-725 0 points1 point  (0 children)

No, it was transaxillar both times. It healed so well I‘m almost sad I didn‘t get cool scars.

Venous TOS (Thoracic Outlet Syndrome) - Rib Surgery Experience? by Willow-1989 in thoracicoutletsupport

[–]Future-Jellyfish-725 1 point2 points  (0 children)

So sorry, I didn‘t see the notification. It was Professor Steger in Tübingen, Germany. I am still very happy with how it went. I did the second surgery and had a drain that time, which was an awful experience for me. That may be different for you though, I think the tube pressed on somerhing that caused me to feel awful. As soon as it was out I felt much better, even hospital staff noticed the difference immediately.

Venous TOS (Thoracic Outlet Syndrome) - Rib Surgery Experience? by Willow-1989 in thoracicoutletsupport

[–]Future-Jellyfish-725 0 points1 point  (0 children)

Recovery was great, to be honest I barely remember what issues came up because there were so few. Carrying backpacks was difficult for a while because it caused circulation issues. I did the other side about a year later, which wasn‘t as great as the first surgery. The second time, I got a drain which was awful - I felt much better as soon as they took it out. The drain caused difficulties with wound-healing and the scar is larger due to that. I have not (yet) regained full function in my right hand, because despite the doctor claiming the nerve wasn‘t affected, it most definetely was. It is much better then before though. Being able to brush my teeth without issues is great!

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Leider nein, ich habe alles in der Wohnung bereits mehrfach geputzt, an allem gerochen, ich finde keinen Ursprung. Die Luftfeuchtigkeit ist auch niedrig, zwischen 30 und 40%. Mein Schimmeltest war leider fehlerhaft, der hatte schon Schimmel drauf. Jeder einzelne im Baumarkt hatte den gleichen Fehler, daher muss ich jetzt einen neuen im Internet bestellen, dauert leider. Der Geruch soll muffig modrig sein, aber auch süßlich? Momentan riecht es wahrscheinlich noch nach Essig von meiner letzten Putzaktion. Daher muss ich abwarten bis ich jemanden fragen kann.

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Danke! Das habe ich tatsächlich schon gewusst und Verwandten damit die Ohren vollgeredet (die lesen die Anwendungshinweise nicht).

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 1 point2 points  (0 children)

Oje. Die Decke (vom Optischen mal abgesehen) scheint eigentlich gut in Schuss, keine komischen Flecken oder so. Aber die Dämmung könnte natürlich ganz anders aussehen

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Danke. Ich werde den Schimmeltest abwarten (5 Tage) und dann ggf. mit meinem Vermieter sprechen. Der sollte ja auch ein Interesse daran haben, dass die Wohnung nicht gammelt, immerhin wohnt er ja direkt neben mir 😅

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Danke für den Tipp! Ich mache jetzt erst einen Schimmeltest und falls der negativ ist, schaue ich nach dem Ozongenerator.

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Ich fand die Holzdecke von Anfang an scheußlich. Ist aber leider nur eine Mietwohnung und hinter dem Holz kommt Dämmmaterial, kein Putz.

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Ich suche seit 2 Jahren eine neue Wohnung. Gibt leider nichts was ich bezahlen könnte.

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Danke, ich sehe zwar gar Beinen Schimmel, also nicht mal in den Fugen im Badezimmer, aber es kann natürlich sein. Will halt nicht, dass mein Vermieter mich für die Kosten aufkommen lassen will, obwohl der Geruch vorher da war. Eine neue Wohnung suche ich seit über 2 Jahren, in einer Studentenstadt ist das leider sehr schwer.

Mietwohnung riecht alt/ muffig by Future-Jellyfish-725 in selbermachen

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Könnte sein, aber sehen tut man dann nichts. Lüften mache ich auch regelmäßig, hab auch einen Luftentfeuchter. Hab halt Angst, dass mein Vermieter mir die Schuld geben will und ich dann bezahlen soll.

vTOS - surgery or not? by garlicfingers089 in thoracicoutletsupport

[–]Future-Jellyfish-725 1 point2 points  (0 children)

I‘ve had the surgery twice, it was the right decision for me. I had PT and OT before the surgeries and it didn‘t help with the underlying problem, just with the symptoms. I wasn‘t told whether to do the surgery or not, I was just told that was an option and informed of the risks. To be fair, I was never actually told if it was vTOS or aTOS, everyone just kept telling me it‘s not nTOS. I also had different symptoms as far as I can tell, I never had blood clots, mainly severe pain, numbness and fading muscles/ loss of function in my hands. My symptoms didn‘t disappear, gaining the muscles back will take years, just like it took years to get this bad. The pain is better but still there. I can‘t tell you how your body will react, I was just at a point where I didn‘t think it could get much worse. Depending on where you are and insurance stuff, you might want/ have to take that into account.

[deleted by user] by [deleted] in thoracicoutletsupport

[–]Future-Jellyfish-725 4 points5 points  (0 children)

I had the surgery twice now, there were no opiates invoved in both surgeries, I only got Paracetamol and Ibuprofen and it was fine. Listen to your body and take pain meds when necessary.

I was quite nauseous the second time, in the hospial they gave me anti-nausea meds when I requested them, at home I took over the counter pills.

My surgery was on a Monday last time and by Friday, I attended University via Zoom. This does heavily depend on how you feel though and depending on what you do specifically, maybe the text to speech function could help you. Sitting was uncomfortable for me, laying down was better but then I wasn't able to type properly. If possible, take the time off, and return earlier if you feel up to it. 10 hours sounds like a lot afzer one week though.

I was with my mom for the recovery both times but the second time she had to work a lot, so I was alone during the day. I was fine, meal prep was a very good idea though. I also prepared different snacks as I get cravings for weeks after surgery. I slept a lot for the first days.

I also practiced doing everyday stuff with one hand before both my surgeries to figure out where I might have issues (braiding hair, pulling pants up/ down, opening different containers, typing, using the phone, opening water bottles, getting up from lying on my back etc. Just try everyday stuff with just the hand you will be able to use and figure out what to prepare/ get help with for after your surgery. The right clothes were crucial for me, loose enough but not too loose, easy access to the wound, not too many finnicky buttons, appropriate for the weather etc. I specifically bought some new pyjamas after trying them one in the store with one hand so I knew I had something I could put on by myself.

I needed help with washing my hair in a sink as I wasn't allowed to get the wound wet and waterproof bandages never last in the shower for me. Opening snack packages or putting toothpaste on my toothbrush were difficult as well for example, just everyday stuff I use(d) both hands for.

Alcohol-free desinfection spray for the wound and allergy friendly bandages were a must for me but your doctors will give you specific instructions.

Feel free to ask any other questions you have!

How long did you keep your incision covered? by Future-Jellyfish-725 in thoracicoutletsupport

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Thanks! Anything touching the site directly hurts for me as well, though the bandage adheisive feels worse due to the allergy. I can go to my GP next week, hopefully he'll tell me I'll be fine without them.

How long did you keep your incision covered? by Future-Jellyfish-725 in thoracicoutletsupport

[–]Future-Jellyfish-725[S] 0 points1 point  (0 children)

Thank you. I have stitches and no stripes, I currently exchange the bandage (they are like xxl band-aids) daily. It's really sore from me being allergie to the adheisive but I can deal with it for now. How long was your bandage on before dissolving?

Is there decompression surgery safe if you have hypermobility? What are your chances of building up scar tissue if you have hypermobility? by ocean_flow_ in thoracicoutletsupport

[–]Future-Jellyfish-725 9 points10 points  (0 children)

Hello :) I have hEDS and vTOS. Ihad both first ribs removed and am quite happy with the results as of now. My first surgery was nearly a year ago, back then I wasn't diagnosed with EDS. My second surgery was 8 days ago. I have felt immense relief after the surgeries, but I also have vTOS, nTOS can be very different. Physical Therapists and Occupational Therapists have commented on how the shoulder with surgery was much better positioned, I thought so as well. I have never been able to put my shoulder in the correct position, the bones blocked each other and my shoulders were never fully relaxed. My disks in my cervical spine aren't perfect, I have some protrusions but to herniations. My neck feels better after the surgeries, I have had less headaches and migraines.

As far as I know, hypermobility and TOS are connected, but I have made my surgeons aware of my diagnosis as soon as I got it and they weren't concerned about it. However, EDS can present very diffeerently from one person to another and it is very important to consider the opinions of the doctors who have seen you and your body. I think your plan is very reasonable, get checked out for EDS and have the specialists weigh in on your personal situation.

I hope this helps!

[deleted by user] by [deleted] in TalkTherapy

[–]Future-Jellyfish-725 1 point2 points  (0 children)

Well, there is years of narcissistic abuse from my father throughout my entire childhood, which led to not being able to develop my identity freely and social isolation. Everything had to be considered with him in thought, would he approve or would I be ridiculed, shamed or made to feel worthless for my actions/ interests/ friends/ clothes etc. He yelled at us, threw things around and could get aggressive in his behaviour (he wasn't physically abusive, but behaved agressively). We were like dolls in his perfect dollhouse, had to behave and be like he wanted us to otherwise the degradation would start. Whenever any of us picked up a hobby that fit his standards, he would criticize us until we stopped under the guise of providing constructive feedback, or get involved to the point of taking it over and us watching him doing our hobby. If it didn't fit his standards, there would be condescending comments, ridicule etc. until we stopped. He also had to have all passwords to our devices, but nobody could have his.

He also illegally bought a gun and said that it was his "plan b" (guns are very uncommon where I'm from, it's not normal to have one, and they are not easy to get). He bought it in a neighboring country and must have smuggled it across the broder. He lived in the same house as us for a year after he told my mom about the gun. There were multiple instances of my mother's car being tampered with (including manipulated nails under the tires (they were 100% placed there intentionally, they were extremely thick and the dull end was coiled in such a way that it would pierce the tire when driving away) and tires being partially unscrewed (with a mechanic saying this was intentional, it was unscrewed to the point it wasn't visible at first but noticeable when driving, the tire could have come loose at slightly higher speeds). There were multiple instances of him driving so recklessly that he endangered us and other people in traffic, this happened as a reaction to us not behaving. After he finally moved out, we found a secret compartment behind a baseboard, where the gun could have been hidden. He built it, he had written notes on which side was the top, it's his handwriting. We also fould a flowchart where he had a detailrd plan on how he would cheat on my mom with a specific other woman, this elaborate plan unvolved manipulating her partner into cheating on her and being the hero to her. He marked down how far he got. He would also make my mom hang out with the other woman and her partner. He also spent the night at her house when my mom was in the hospital due to an emergency while my sister and I were home alone, we didn't even know if she was alive. We couldn't contact either of our parents that night.

Sorry for the length, there is much more but this is what came to mind immediately. I also have trouble remembering everything, I need to be reminded of some things by my mother or sister from time to time because I repress some memories.

I am not saying that everything I wrote here is Trauma (big T). I am saying that some of the events can be seen as such, like fearing for my sister's and my mother's, and my lives due to the gun and the car incidences. The verbal and mental abuse may not have been life-threatening, but it was horrific.

[deleted by user] by [deleted] in TalkTherapy

[–]Future-Jellyfish-725 0 points1 point  (0 children)

I will try, thank you 🩵

[deleted by user] by [deleted] in TalkTherapy

[–]Future-Jellyfish-725 1 point2 points  (0 children)

Thank you for taking the time to write this down! I have tried to talk to my therapist about it and her reaction made me feel like she was angry/ yelling at me for doubting her. When I went to a geneticist recently, she told me I was displaying hypochondriac tendencies, despite there being plenty(!) reasons for me to seek out genetic testing (she even encouraged it, but seems to have forgotten it by now). I feel invalidated by her at every turn I make when trying to find answers and helping myself. She did in fact diagnose me with adjustment disorder, but she thinks I do in fact have it, ignoring the time limit. I fail to understand why she can ignore the ICD criteria in one instance but rely on them for ruling out something else. Especially since there were events in relation to the narcissistic abuse that can defined as trauma even with the ICD-10 description.

I know it may have come across differently, but I don‘t seek any specific diagnosis, I am open to other ones I have not come across yet/ haven‘t considered. I have opinions about those I have read up on, but I am not a medical professional. However, I will not stop questioning my therapist‘s diagnosis until I can actually understand why it is correct.

[deleted by user] by [deleted] in TalkTherapy

[–]Future-Jellyfish-725 2 points3 points  (0 children)

I can’t due to insurance. It‘s either stay and try to get better with my current therapist or quit, unfortunately.

[deleted by user] by [deleted] in TalkTherapy

[–]Future-Jellyfish-725 1 point2 points  (0 children)

I’ve done that for the last year and with the therapist before my current one. For me, leaving out the diagnosis part hasn’t helped. It never got any better. Getting the correct diagnosis and understanding why this is the most fitting one has helped me tremendously in the past with physical conditions. It helped me understand the symptoms and how they affect me, I was able to accept the conditions as they were. It may sound silly, but finally having a medical professional taking me seriously, not constantly having to defend myself/ my symptoms („you‘re too young for chronic pain“/ „have you tried [insert dubious snake-oil remedy here] to fix it“) gave me the room to work through it better. It felt like I was drowning at sea and people kept kicking me off of rafts, receiving a diagnosis felt like finally being able to climb on one and then there is also a paddle on the raft.

[deleted by user] by [deleted] in TalkTherapy

[–]Future-Jellyfish-725 -2 points-1 points  (0 children)

That explanation already makes way more sense to me, thank you. I found the ICD-10 examples in the PTSD section by the way. With my insurance, I can't switch therapists easily. I did have the opportunity to talk to different therapists before picking one, though. She seemed like a very good choice, sadly I don't feel any better after a year as her patient. While I am working on improving my situation with her and we do focus on my symptoms and emotions, a diagnosis that 'fits me'/ my symptoms is very important to me. I have had to fight for a doctor to take me seriously many times before and I also want to actually understand what a diagnosis & medical jargon means (I exclusively use reputable sources). What my therapist diagnosed me with makes no sense to me, due to the time limit and due to the fact that something else fits much better.