I don’t think any of us know what’s going on with the blood vessels on your forehead… we are not here as doctors… so I would definitely say go and get medical advice, even if that means going out of State.
Thanks for your comment. I understand that no one here is a doctor, and I never expected anyone to give any answer with certainty. I was simply asking about what symptoms people who had a second rupture had, and then I saw the vessels days after I initially posted, so thought I’d share and see what others thought. Thanks again, I appreciate your time and comment.
A couple of things- first of all, obtaining health insurance should a top priority for you. You are the exact person that Obamacare was created to help. You can get coverage on the exchange with no preexisting conditions excluded and have the cost minimized thru subsidies. I would take advantage of it.
Secondly, I had a similar experience when my bleed happened. The drs thought I was on drugs and wouldn’t treat me until they ruled that out. 2 hrs later tests came back clean and they scrambled to get a helicopter to fly me to Atlanta.
The fact of the matter is if you show up at a small town hospital, they have very limited knowledge of brain bleeds, but they see addicts all day long. I would get health insurance, then start a relationship with a top notch neuro center like ones found in Nashville or Atlanta. Don’t waste your time on the local hospitals.
Good luck! And let me know if I can help you with any of the stuff I mentioned!
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Think about this- a lot of people who have had a second rupture aren’t here to talk about it. I’m assuming you aren’t following your dr’s follow up scan instructions bc of no insurance.
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I really appreciate your comments. I haven’t been on the Market Place this year bc I’m in a very sticky situation as far as my “household status”. It’s changed drastically in the past year, and I 1) have absolutely no control over it, 2) it’s liable to change at any given moment & 3) know very little about it (and I’m not supposed to it seems).
I have absolutely never thought about that the way you broke it down as far as the small hospitals having such little knowledge on brain bleeds but see overdoses every day… I did come back positive for a controlled substance that I’m prescribed and they failed to note that I was in fact prescribed it, although 1) they always access you prescribed medications through some kind of pharmacy database and see what you’re prescribed and 2) I brought all my medication bottles in and showed them. But it still makes total sense what you’re saying and I would love to get insurance and get established at Vanderbilt or something. I’m just taking it a day at a time and trying to figure out what I’m supposed to / allowed to do.
And you really made me stop and think with your second post. Thank you. I’ll keep you guys posted. Blessings. 
And you’re correct that I’m not trying to go to the doctor because of lack of insurance. I saw a neurologist who seemed to understand AVM’s but he ended up just telling me to come back in June? I’ve thought of calling and telling them my symptoms and that I don’t have insurance and ask what they recommend. I know most hospitals offer financial assistance, but bc of the family/household situation, I don’t know if I’d qualify.
Thanks so much.
After I had my coiling, my dr said come back for a follow up MRA in 6 months, and again 12 months later, and again 2 years later. Im not sure what your dr said to do as far as follow-up, but I know those tests are expensive.
If you had a change of household, that allows you a special enrollment period on the exchange. Normally you have to wait until open enrollment which is in November. I guess this could be the silver lining of having a change of household! I would at least go on the website and check out your options. The govt has really given you a good option here since before Obamacare, there would have been no subsidies, nor would your brain issue even be covered!
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how is your blood pressure? A lot of times bleeds are related to high blood pressure.
Sure sorry to hear about it, but short answer for me is no. Mine bled, had craniotomy and resection of AVM. I heard the weetest words when the followup anigiography was performed a couple of days later while I was still in the hospital. Though still pretty much out of it, I distinctly remember the doctor saying, “No sign of any tissue, looks like we got it all.”
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I need to find a place that will help me. Like another person said, I think going to a bigger city is the best idea, but idk what to do about insurance. It’s like they aren’t even giving me options to do anything about the AVM. Like they don’t know or they know and don’t think I deserve it? I’m not sure. My last neurologist did say something about the gamma knife, but he never followed up with anything about it. I’m just feeling ready to let it go and let whatever happens happen, honestly. God bless you ALL!
I’m not sure what going on with my household though. It’s really confusing and I don’t want to spew my issues for all of you guys. But it’ll be okay. I really appreciate your help and concern!! Right now I’m just feeling tired of fighting with no help. I lost my mom just a couple of months before I had the rupture and she was the only person who I had that cared enough to help. Maybe others do care enough, but they don’t understand and when I send info to them they don’t even take the time to read. I’m almost to the point of just letting whatever is gonna happen happen. Maybe I’ll snap out of that soon. God bless you all! I apologize for my dark demeanor today. I’m just so tired of all of this. I’ve basically begged for help from people I know and doctors but it’s like no one takes me seriously. Thank you again!! You’ve been very encouraging!
I certainly hear your frustration, but know so little of the system in the US that I’m struggling to offer suggestions. I’m fortunate to have a nurse practitioner who is my primary care provider and takes care of referrals and all the other items related to my health. The neurosurgery unit I deal with directly but all information is charted on a common chart so my NP can access. I’m not sure if there is a chance to start with a primary care provider, who can also be an advocate, and engage the specialist required. gain, not sure how the insurance piece works, or any options to help navigate it. I do hope you’re able to find some assistance. Take Care, John.
Thank you, John. I’m not sure of any of those things either. I do know that I have been begging for help for nearly two years now and I’m just tired. I don’t know where to turn and sadly no one to help. I had a primary care doctor but without insurance she’s no help, and even with insurance she really wasn’t any help. She saw the false accusations on my chart from the hospital and never treated me the same afterwards. I really appreciate all if you!! I’m hoping that I’ll get the “fight” back in me soon, but for now I just can’t anymore. It’s too much when you have no one to help make decisions and you’re not capable of making decisions anymore. Please understand that I’m not having a pity party!! I just can’t do anything about this right now so I’m just going to take a step back and see what happens. God bless, I wish you all the best!!
Kaila
You are among friends here, and we care. John
Thank you. That truly means a lot to me. If you don’t mind me asking, where do you live? I’ve seen several people from Canada, and I believe a few from UK. The healthcare system in the US is a total wreck, and sadly the current administration doesn’t seem to be doing much to help with that. Thanks again for your words of encouragement. Many blessings to you and yours!
I live in Canada, and while the health care system is extremely busy, they treat on a priority basis. I have nothing but kudos for my involvement, I have met some incredible Drs, nurses, lab techs and everyone involved! I see my experience as really fortunate.
That’s awesome!! I’ve heard really great things about the healthcare system there. I have a good friend in Canada and I asked him what it would take for an American to get healthcare there, but he didn’t know, he said that he would check but he’s always busy, and he doesn’t understand the extent of my health problems, so he hasn’t given me any information. He jokingly said that we could get married and I’d get healthcare there, lol. We have been friends for over half my life, so no harm joking that way. Anyway, I have heard that it’s on a priority basis, but I had forgotten about that. Now that I remember that, I think I’ve heard that in a negative way sometimes? Like sometimes people who really need treatment don’t get it because others need it more? Maybe I’m wrong, my brain is so messed up since this rupture, and I think it’s getting worse all the time! Thank you for sharing with me! I wish you all the best and I’m really happy for those of you who have had good experiences (although anyone who’s been through this can’t really say it’s a good experience, it’s still better than many!). May God bless you all!
Kaila
Mine ruptured three times, the first time was in early pregnancy before I know I was, the 2nd one was then I was around 20 weeks pregnant, then the third was 2 weeks after gamma knife surgery, I was told I was a miracle case and it was very uncommon.
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i also had 3 bleeds - when i was 18, 19, 24. Had gamma knife twice now, had 90% removed now.
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@Rich2 Can you remember any particular symptoms you had prior to any of the bleeds? I don’t really remember what symptoms I had before the first bleed, other than my legs were swollen and numb for probably two weeks or more before I was hospitalized, and I just had a general feeling of not feeling well. I don’t know how else I can say it, I hope that makes sense. But I don’t understand why my neurologist talked with me about the gamma knife and never followed up on it. You’re very fortunate/blessed! I’m sorry you had to go through all that, but thankful that you made it through!! I wish you all the best!!