Thank you Julie. I will keep you in mine as well! Take care.
Shana, thanks for providing the website...
Somewhere in my files, I have info on another site; when I find (trip over that box/drawer) it I will post it, too.
You're welcome! That sounds great Pat...it's always good to have choices and more info! I have never done the surgical materials testing, but personally I feel the dental one has been helpful. Some dentists refused to even take a look at the results which in the long run helped me find one who was more understanding.
I had severe migraines for years along with vertigo until they found my basilar tip aneurysm. They coiled it and when I woke up my head felt different. I had headaches and vertigo for about 2 years after but they weren't severe. I don't think our brains like anything foreign. As to taking it out, has he lost his mind? Only the interventional radiologist can tell you whether it can be. I have a stent holding mine in place and I don't think they can even remove the stent. Hope things get better.
Shana -
You typed Carole because you were responding to me in the trail above :-)
Carole
Julie.
It's really hard for me to imagine how you are managing all the challenges that you are facing. You are an incredible woman and you definitely are not alone. At times like these, I have to be believe that it's only because the Lord knows how much you can bear.
I have experienced similar frustrations over the years. My conclusions is that the doctors simply don't know and they have no experiences of their own that they can relate to. However, it would really hard to go away from what you read on this site and not see a connection between coilings or clippings and headaches.
Now, I can become analytical and parse words and conclude that it's not the coiling or the clipping that causes the headaches but rather the fact that something foreign has invaded the brain and arteries and that the body is simply defending itself and healing at the same time.
So, the question becomes what can we do about it? Sometimes, what the doctors seem to say is "grin and bear it" while I minds tell us to "fight with all your might".
I'm very happy to read that you have some help because otherwise suggesting that you try to get more rest would sound ridiculous. However, the body repairs itself when it is at rest so I encourage you to enlist the help of your children to adjust to the new normal, perhaps by establishing common rest periods. :-)
Please expect that it will take you twice as long to do somethings as it took you before. This will probably improve over time but for now this is the new normal. So, may I suggest that you take another look at your massive TO DO list and re-prioritize the items on it once again. Then, commit to do what is essential, hand-off to another anything that someone else can do, postpone what can be postponed and then delete what can be deleted. This will allow you to reduce some of your stress.
The things that are upsetting you are real to you!!! The challenge is to adapt as best you can. I can relate to the frustrations of having reactions to your gold jewelry. I also have allergic responses to things that don't generally bother other people. I won't even start the list here but suffice it to say that it is extensive and has required a lot of changes to what I use, wear, eat, drinks, etc. I've adopted the outlook that these things are what make me special. :-) Your reactions to various substances are what make you special.
My suggestion is to keep track of what reactions you have and categorize them into groups that can help you take manage them, perhaps as follows:
- Avoid what you can avoid,
- Change what you can change,
- Accept those that are "nuisances"
- Work with your doctor to resolve those things that you just "can't live with"
- Pray to God for his help with all of these
May God bless you and your family.
Carole
Lynne,
I think you are so right; and, of importance, would be addressing the arteries/segments for location. That would provide the anatomy for cranial nerves, lobes/portions, ventricles, fissures/sulci, etc., etc. There are no stats on arteries during the procedures which are affected by guidewires, coil placement/detachment, or clips.
There is so much more I can add here if you want to work on your main suggestion. I will help anyway possible for you.
After we get sufficient data, we'd need to find the way to turn it over to the neuro-specialists for them to secure a true clincial study. Seems like it would be BAF and/or TAAF in CA; any others I do not know. And/or we could attempt the FDA direct.
Please let us know your desire, intent, commitment for any of us to assist.
Pat
I am so very sorry for the ordeal you had to go through. That's a lot of days in between the initial symptoms to the final confirmation. But kudos to you for insisting and putting your foot down when they told you to go home the nth time. A rupture is a very life-threatening situation so I am just glad things turned out okay for you (in respect of having them coiled) except for the new issues you are now facing. I agree with Tammy. You could be allergic to coils. Clipping, I read is more "final" so if that is the way to go then maybe it will be for the best. Of course, talk this out with the surgeon first. All the best.
Hi Julie,
I am so sorry you have been having so much difficulty - I know it's tough especially with little ones. I was coiled and stented this last October for a basilar tip aneurysm. I have had 2 really bad side effects since the day after the surgery - my hip was killing me. The past week it has now gone down into my left leg and my feet are always tingling. My PCP thought it was the joints and referred me to orthopedics. I finally called and scheduled an appt in April. The other side effect is being out of breathe from any slight exertion, though that has been better lately (I did have an echocardiogram and pulmonary function test). I may end up having her refer me to a lung specialist? My headaches subsided after a month, but now I have a lot of pressure in my head which I asked my neurosurgeon 2 weeks if that was caused by the coiling. First he said no, then he said he really wasn't sure.
I am only being seen by my neurosurgeon for my head - he has made no mention of a neurologist, although it seems as if a lot on this forum are seen by one.
I, too, agree with others on the craziness of taking out the coils. Do you feel comfortable with your neurosurgeon? I find it surprising that the doctors are saying your symptoms are unheard of. Most of us go through at least the headaches and exhaustion. I didn't have the vertigo, but lots do. Vomiting could be from the headaches or medicines - they did have to give me nausea meds in the hospital. I also think my lower back problems (and leg and foot) may be from the position I was put in during the surgery (or who knows what), but I don't think mine is because of the brain.
Have you thought of getting a second opinion? I hope you get some relief and some answers soon. You are not very far out from your last coiling, so it's understandable to still be experiencing headaches and exhaustion. Are you getting any meds to control your symptoms? My neuro told me 2 weeks after the surgery that they didn't know if the surgery or coils caused headaches afterward. Just like he admitted that they didn't know if it was causing the pressure I feel in my head.
I'm glad you found BAF - I know I would have been a basket case if I didn't. Take care,
Sherri