Surgery number 4 took place early Friday morning. I was under for a little over 6 hours and overall it was a success. My surgeon wants me back in 6 months for surgery number five. He plugged up a feeder artery that was 10 x the normal size. He showed me a picture of it, and that thing was massive and nasty! Lol. They gave me an epidural before the surgery, so I ended up staying in the hospital for 4 days instead of just one day like I usually did in the past. I had to really fight and advocate for myself this time to get the proper pain management I needed. The head of the pain team was very dismissive and indifferent and basically told me that most of the pain was in my head and that I needed to stop getting myself worked up. He also refused to adjust my pain management for when I went home. I started crying (because Iām an overly sensitive big baby) and the nurse went and chewed him out and suddenly he came back all friendly and agreeable and prescribed me a higher dose of medicine that will last me for the rest of this week. So Iām not sure what she said to him but I am grateful because she was my saving grace and made sure I was heard. My epidural somehow came undone after about 19 hours so I was lying there crying and in pain and Everytime I clicked my button to pump more medicine, little to my knowledge it was just being poured onto my bed. Finally one of the nurses came in there and noticed the epidural had come undone a few hours after I had to lay there and essentially go cold turkey. All in all, now that I have finally been given proper pain management, the difference has been night and day. Iām still in pain but itās so much more tolerable than in the past. If my last three surgeries could have gone this smoothly, I probably wouldnāt even have PTSD. The plan for my next surgery/surgeries is to give me an epidural again and follow through with the same pain regimen at home which I am grateful for. I hope that maybe one day my surgeon will be able to treat all of my AVM and get all of the feeder veins and arteries, so that I never have to come back again and all of this will just be a distant memory that no longer controls my every day life. that might seem like a pipe dream right now, but Iāll keep dreaming about it. Also, I forgot how much I hate the nausea that accompanies surgeries 
but Iām getting through all of it, one day at a time.
The nausea might be related to the pain meds but itās fantastic to hear you got through well!
Also, Iām grateful that I can still walk and I hope that I donāt end up losing function of my leg in the future. But for now, the leg still seems to be kicking. So thatās always a plus
So happy to hear everything is moving in the right direction for you! Keep fighting.
Thank you. I hope one day the fight will be over.
Hi, I am glad that your surgery was successful and you are on the proper pain management now. I am so sorry about the struggles you have endured in the past but hang in there and keep fighting!!
I wanted to say that my son had nausea and vomiting after his first angiogram that was not relieved by the first line nausea meds they gave him. They ended up giving him Benadryl and it stopped his nausea and vomiting immediately. Now they apply a scopolamine patch behind his ear before he gets sedation and he hasnāt experienced any post op nausea or vomiting since. Maybe you could request they try that for your next surgery.
Yeah, they usually do give me the little nausea patch to stick behind my ear, and it definitely does help, it takes the nausea from like a 10 to about a 6 which is definitely an improvement!
Hi! I am a fellow pelvic avm Ā« sufferer Ā» Embolisation number 4 was also much better for me but number 1 was good too. 2 and 3 were a nightmare so I think it very much depends on what they do. My hospital is much more understanding for pain management and I have had fentanyl and oxycodone given on waking up from number 3, so keep on telling them when you hurt despite the drugs given during the GA. As far as nausea is concerned, theyāve tried different anaesthetic and sickness tablets with me too, but itās really part of the deal, unfortunately. I find it gets a bit better after the 4 hours compulsory lying are over and I can move around. It helps eliminating it. I also eat, which is counterintuitive but works. I will get one a year from now on and I hope yours slow down and settle as well. On a positive note, I could barely walk before number 1 and, although I still use a walking stick, I am now much better. So even your legs were affected, there is hope. I am grade 4 so I also have an enlarged heart and AF now but even this is manageable. Best of luck
Iām sorry that it has been so hard on you but I am grateful that you have seen improvements. Wishing the best of luck to you as well!
I am so proud of you for advocating for yourself! Pain has been described as being āwhat the patient says it isā. It is considered a vital signā¦thatās why they ask you to rate your pain on the 0 to 10 scale so often.
That disconnect of your epidural catheter certainly didnāt help. Iāve had one before and it works beautifully when intact, and analgesia is started around the time before the anesthesiologist removes it.
āKeep up the good work. And, being an RN, I am very pleased that your nurse took your pain seriously and spoke to your doctor.
@moonglow500 I am so sorry about the pain Dr. I love nurses and I am lucky and see the head of pain at Stanford - and would never say those things. What a jerk - I am so glad for that nurse for you. At the pain dept they have tried everything to quite my head pain after my two strokes and this was before the opioid crisis - I am allergic to the fillers they think anyway Ketamine infusions has been the only thing that took anyway my pain for three months. I donāt understand why they donāt try this more. Stanford uses a lightweight dosage which is fine with me because I am a lightweight. Also I donāt know why they donāt listen when we say we get nausea during surgery and they only give zofran and we need something stronger like the patch .
Medical PTSD is no joke.
Hopefully next surgery you can have some family or friends in the hospital taking turns to be with you to make sure no mistakes happen again.
When my family is in the hospital or even myself I buy some coffee gift cards and hand them out to the nurses . Between myself and my sister I spend so much time at Stanford a few Drs think I work there 
I hope you are feeling better
Angela
Youāve made me think that if we grow this community sufficiently, we might be able to be there for each other from time to time. I went to see @corrine in hospital for her first embolization because I happened to be in about the right place at the right time but sheās the only person Iāve been able to do that with / have really thought about visiting.
@corrineās mum was seeing her each day but itās tough when youāve got no family around you, or not the kind of relationship where they are going to help you greatly for whatever reason.
@DickD That is wonderful esp for people who donāt have family and even for those who do. Sometimes people donāt get it. I had a good friend who was having neck surgery and never had surgery before . I tried to giving her and husband advice that someone who need to spend the night with her at UCSF because they donāt have enough nurses . So I offered to either spend the night or take care of their daughter well no one was spending the night and they told me a white lie and I had packed a bag anyways. So when the husband was leaving I went to get my bag out of the car. I had already already alerted the nurse she might need some anxiety meds or Valium - they had not giving her pain meds in recovery and it was kinda a mess throughout the night as I had expected. It was also the night before Thanksgiving . The next time she had surgery her husband spent the night, Also family needs a break as well and if we can provide a couple of hours to be there even if they are sleeping to make sure nothing goes wrong its peace of mind- we are a community
Hugs
Angela
Community is everything, especially for those of us with very little to no support in our personal lives. I appreciate you guys so much! 
You are so right. Support and advocacy are important, sometimes critical, during and after dealing with a health issue, especially one of our magnitude! It can be a great benefit to the nurses as well, knowing someone is there to help ease the patientās fear and anxiety.