Good choices come from experience, and experience comes from bad choices! I always cringe when at work they refer to me as one of the more experienced guys…best day to you all! John.
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I’m well on my way then 
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Figured I would give an update on my status. My heart rate finally went back to normal and I am no longer concerned about that. I am now just over two months since my embolization and just provided the date of my next embolization (July 4th).
I wanted to ask some advice regarding my headache; it is still there 24/7 and actually started feeling worse every day this week to where it is now becoming almost debilitating. The headache also extends down into my right throat gland region, with random sharp pains in the gland and right temple. Is this constant, almost progressive headache something I should be concerned about or should I just monitor it until my July 4th procedure. I have some concern that I may be bleeding again but maybe that is just the nature of the pressure changes going on.
Thanks all and hope everyone is keeping safe and healthy.
Chris
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Chris,
I can only tell you that I felt my DAVF was changing quite rapidly: My Update - Dural AVF Embolization
You need to judge what’s going on and tell the neurosurgery team or your primary doctor (as an advocate for you, perhaps) what’s going on. You’ll see in the linked conversation above that I worried in much the same way as it sounds you are worrying and I’m not sure I held back in telling the neurosurgery nurses about how I was or telling my GP how I was. My approach was to give them the information to judge whether I was ok to wait until the beginning of April for my op or whether it sounded more urgent. In the UK, treatment is free – paid for through taxation – but what that means is that there is limited capacity. I didn’t want to elbow my way to the front of the queue at someone else’s risk. I just wanted to ensure the information was there to make the right decisions (and you’ll see me being concerned that it might prove too late 
)
I’d say it was my GP who relayed what she could hear of my DAVF (and the area on the back of my head where she could hear a bruit) that finally drove a decision to get me in.
It’s a worrying time, I’m with you.
Stay in touch 
Richard
Thanks for the feedback Dick and sharing your experience. Here too medical is covered and doesnt cost me for a visit but I also dont like to bump others that may be more in need of the resources. I also dropped into this local hospital a couple weeks back about my heart rate all over the place and they did some tests on my heart and a CT scan of my brain. The doctor at the time said it was not rebleeding but that there “was alot going on up there so hard to make it out”. I am reluctant to go back for another CT scan and start to be known as the boy that cried wolf. As I have told my wife, I will wait to see if it gets any worse before I consider going back in.
Regards
Chris
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I know exactly what you mean about the cry wolf thing. You need to judge that but most blokes tough things out that they shouldn’t. So somewhere is the right balance.
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Just wanted to give an update. Sitting in my hospital bed 4 hours after my second embolization and things went well (I did wake up so that worry is out if the way). I seem to have a reprieve from my headache right now (thank you hydromorphone) and my only pain at this moment is from the Angio-seal used to close up the catheter insertion site. The best my headache has felt in months 
I haven’t been able to speak to the neurosurgeon yet to get an update on the AVM’s current status and the updated game plan moving forward (radiation). Just wanted to update this string so as to help anyone with their decision making on whether to go the embolization route, All in all, I think it has gone pretty smoothly for me with no deficits to report.
PS. It is very hard to type with one of these finger monitors attached to my pointer finger
Thanks all,
Chris
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Chris!
Great to hear! And pretty marvellous typing!!
The morphine is great, isn’t it? Hopefully, you’ll do nicely as that wears off. I hope it continues the way you need: I can’t imagine that doing only part of an embolisation really helps your head to feel ok, so fingers crossed 90-something-percent of it done now means that you’re a lot better.
It did take me a long time post embo to feel towards “normal” so it’d be great if that’s noticeably quicker for you.
Best wishes,
Richard
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That’s what I am hoping; that the upstream pressure of trying to squeeze the blood that had been flowing through the full nidus to only the remaining 10%. That this has been the source of my endless headache and not the buildup of back pressure due to the embolization and brain “re-plumbing” itself. If the later, the headache is only likely to get worse by closing off the remainder and increasing the back pressure. We shall see what my head has to say once they cut me off of my meds. Thanks again Richard.
Chris
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Hey Chris,
That’s about all you can ask for (and the drugs help 
) Long may it last. Sometimes the drugs can mask the background reality, so I’d still be recommending a slowly, slowly approach in recovery. No running marathons for a while 
But if you are starting from a ‘Good Place’ initially post surgery, that’s a big plus to be starting from.
Lets hope they have all of the “re-plumbing” sorted.
Merl from the Modsupport Team
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Thanks Merl. Definitely will allow for at least a month regardless of how I feel before I do anything overly active. I don’t intend on having them prescribe me too many pain killers to take at home as I don’t want to pick up any bad habits 
I at least think I am going to get out of here without the nasty infection I did the last time so that also should allow me to assess where I am at from the get go.
Regards
Chris
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I am back at home now and beginning my recovery. In meeting with the resident doctor that was in on the surgery (didn’t get to meet with the big guy), he filled me in a on a few of the details. While they closed up the remaining portion of the AVM that they skipped on the first procedure, the other portion has a new feeder and a branch of about 40% is back. Explains I guess why I have started getting slight focal seizures again. While I am disappointed about this development, I shouldnt be too surprised as I never expected embolization to be a cure. I am however worried that with this re-expansion of parts of the AVM, will the ruptured portion re-expand (or try to despite leaking blood into my brain again)?
I will be doing a phone call convo with the head neurosurgeon in the next couple days I believe, and will get a more accurate explanation. The other doctor did also bring up that the next step is going to be Cyber Knife Radiation (not sure how that differs from Gamma Knife) and likely to take place within the next three months. I tried to pin him down on a time range and the three months is what I got him to commit to.
PS. forgot to mention that I have been prescribed Lacosamide (Vimpat) for the focal seizures. Does anyone have any experience with this medication as I am always reluctant to take meds?
Thanks
Chris
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My understanding: does the same thing; uses less ionising radiation, so overall good.
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Hi Chris! Wish you a fast recovery 
It’s one week since my unsuccesful embo and I have a quite noticable bump on my right arm at the puncture place and my arm from elbow is yellow-green-violet and still painfull.
Thanks Jenny and sorry to hear about your procedure not working out as hoped and the yellow-green-violet and still painfull area. My puncture place is exactly the same, only a bit lower down .
Hi Chris. My AVM was in the back of my brain near my cerebellum and spinal cord. It ruptured in 2003 and I had a craniotomy. It’s funny you mention extreme sweating. Prior to my AVM, I did not sweat profusely. After my AVM, I sweat like crazy now. If it’s warm outside and I’m just standing there, I start sweating like crazy, or when I do a workout. My heart rate also increased, so I take a blood pressure medication. There’s no medication for extreme sweating. Because of the damage to my brain, some of my autonomic functions don’t work right. My heart rate, and spinal fluid production are two examples. I have a dull headache all day every day. I’ve never had a seizure, but I take a seizure medication too. It’s been so many years now that I am used to it so it doesn’t really bother me. My doctors tried different methods and medicines to help give me the best quality of life. That’s all I have now. But, I’m a happy person, I have a good life, so I don’t have much to complain about. Things will get better for you soon. Just stay positive.
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Hello Michael and thanks for taking the time to respond to my posting. The sweating I have learned is called hydrohydrosis and came on with my being launched into a manic month, mostly went away once I hemorrhaged, then completely disappeared with my first embolization. To think I blamed the initial sweating on some new Lululemon shirts I was wearing to the office .
You and I must have a similar location that has been damaged as unusual sweating, changes in heart rate and all day headache are symptoms we both have. My libido disappeared entirely too so I hope you don’t also share that problem. I am glad to hear that you are settling into it and have a great outlook on things. I hope to get over the mental hurdles I am having right now and end up sharing the same healthy outlook that you have. Thanks again Michael.
Chris
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My AVM was in the back of my brain. They had to remove part of my cerebellum and part of my skull around the brain stem.
I did lose my libido too. Not all of it, but some. I have tried some pills to help with that. But everything still works.
The sweating part sucks, but I just had to adapt to all of the side effects of everything.
I have noted mine incorrectly on my profile summary as it is actually in my right temporal lobe and very close in proximity to the brainstem and thalamus. I will be talking to my gp soon about some sort of medication as well to try to help things along in that regard as well. I guess I am going to have to accept some changes upcoming and learn to accept them.
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2nd Embo - ouch! Shit, GL man!
Since libido was mentioned - I don’t wtf, but ever since coming home it’s def quite up. In my opinion has to do something with the redirection of blood flow around my brain.
I just hit the 3 year mark post embolization & have been getting random headaches on the right side of my head - not quite blinding, but enough to take something for them. I figure it has to do with our almost 120 degree temps here in AZ.
As far as body temperature control, I’m ok with the heat. But, when it gets a tad too cold ever since the hemorrhage I get the shakes - like I’m freezing, but it’ll only be 60-65 degrees