Hello all! I have just learned from an MRI/MRA that I have a "Dural Fistula" that is causing bad headaches and a heartbeat noise in my ear among other possible issues. The Dr I am working with told me we could do an Angiogram look at the pictures and go from there or go in and do the Angiogram and embolization at the same time. He tells me it is 6 of 1 and half a dozen of the other for him and it is my decision. Seems to me like it would make more sense to just go in once instead of twice especially if we may have to go in again later to fix more if it. Any advice would be greatly appreciated from you all!
I had a dural fistula, which they didnt find on the MRI/MRA. I had a stroke so they suspected something was wrong. It was only when they did an angiogram that they found my dural fistula. They went in the next day and embolised it. I wondered why they didn’t fix it after the angiogram so they wouldn’t need to go up my artery a second time. However, I was in no condition to question the surgeon because I couldn’t speak (from the stroke). My vote is to do the angiogram, then the embolisation, if possible. It doesnt make any sense to go in a second time. The angiogram has its risks but the embolisation itself has additional risks. There were some discussions on this website about it. I will try to find them. I had my bleed in May 2011. I’m havine a follow up angiogram on Monday, Feb 27 to see if embolisation was successful. I hope and pray it was.
Thank you for the insight!!!! I am agree with you it makes more sense to only go in once and do what they can while they are there. I wish you all the best on Monday and hope with all my heart your results are clear. What a sigh of relief that would be! I will keep you in my prayers and do let us knnow what you find out!!! Thanks again for the help!
Thanks for wishing me well on being AVM free. Enter “risks of having angiogram” in the top right hand box for discussions about angiograms. I am searching for another post too.
Hello and Welcome JessAnn
I just had an angiogram and embolism Jan 5th for a dural fistula on the left side. I recommend just doing it all at once there are risks each time they go into your artery. I had my procedures at Stanford. I had a stroke due to five blood clots last March. Then in June my head pain changed and was sometimes hearing the whooshing. In October it got worse and progressed to all the time. My MRA showed retrograde blood flow which was diagnosed as malignant and that they should go in and do the angiogram and if they could fix it do the embolism at the same time. I saw Dr Marks who many people on this site have seen and even traveled from other states. I had a complex fistula and it had 30 connections on the arteries side and one on the vein side. I still have the vein side and only one of 30 on the artery side. I had lots of head pain after so make sure you get pain meds. I used lots of ice gel packs for some reason the pain pills were making me so sick and I was vomiting,
For me they used medical glue and onyx the doctor said if they could not do anything via the embolism they would know via the angiogram you meet with another doctor who do the cranitomy. If you just have the angiogram you are awake and for me I could see what the doctors see...then you will just stay in the hospital for 6 hours to make sure your groin cut clots. If you have both you will stay overnight. After treatment the doctors will want to follow up with another angiogram - I am pushing for next year. I see Dr Marks next week,
I also take magnesuim which helps with head pain and I am on gabapetin as well.
Make sure your doctor has done many of these you dont want a young doctor who does not have lots of experience. Are you going to Mayo? What side is your fistula?
Angela
Hi Angela! Thanks for sharing your story it really helps to hear about others who have gone through this too!! My fistula is also on my left side and started with these sudden incredible headaches that come on every day. I have been taking Advil but it is starting to make me sick to my stomach so I am trying to back off. How does the Magnesuim work and how do you take it? Also can you buy it anywhere or do you need a script?
I think my Dr is fairly experienced he said he has done close to 2000 embolisums so I think I will be ok with him the best part is he treats me like a humanbeing and takes the time to answer all of my questions in detail and will sit down with me at any time at no charge! This is nice after three years of trying to find a dr who would even listen and not take the attitude "Its your problem not mine!" The other good thing is he is completely covered my my insurance where Mayo is not so that helps with the finacial aspect!
Thank you for taking the time to answer my question it is wonderful to have people to talk to about this! I hope all goes well when you talk to your Dr neext week!! keep me posted and let me know how you are doing!!
Thanks I will do some searching!!
Please investigate further. I was offered the same choice last year with my son. Now I am finding out after doing embolization that it may not have been the right choice. I won't pretend I can judge in your case, but there will be consequences whatever your decision, and if your doctor isn't giving you a clear picture of what those consequences may be, it's time to get a better doctor. Best wishes to you!
Fure sure I want all the info I can get before I commit to a decision!! Thank you very much for your imput! I hope all goes well for your son!!
Hello JessAnn
The headaches are terrible. Do not take advil it will tear up your tummy ask your doctor for some pain pills. Magnesium you can get at a health food store or even walgreens
You can take up to 700mg a day just spread it out throughout the day. Also the blood pressure pill that is a bad blood pressure pill that helps with pain is called Verapamil I take 40mg 3x a day and it helps too - they wanted to increase me to 80mg but I already have low blood pressure. Glad your doctor is kind and treats you like a human and also that he takes your insurance. That is good he has done so many embolisms. My doctor said its an art form on how they decide what treatment. Also be sure not to take any advil for at least 10 days before your angiogram or asprin, You dont want anything that could thin your blood before your procedure.
Did you have head injury prior to the headaches or have a child?
When are you going to have your angiogram and embolism?
I will let you know what the doctors say next week
Angela
I am going to try to quit taking the advil all together I don't need to add any more health issues!!!! The Neuroradiologist who will be doing the procedure didn't have an answer for the headaches he said to call the Neurologist. So I called my Neurologist on Thursday and asked him what else I could be taking I am still waiting for him to call me back.
The crazy thing about all of this is I did not hit my head or have a child or anything that they can figure out why it started hurting it just did. Hopefully it will go away as easy as it came!!! I have not scheduled the procedure yet I am leaning towards the Friday before Mamorial day (May 25)so I have the three day weekend off of work to recoup. Also I can take a vacation day that friday and Tuesday and have 5 days total including the day of surgery. I live on my own so I can't afford to miss too much work!
Thanks for listening!