I met with my doctors at UofM hospital this week and now I need to make a decision, surgery or radiotherapy. I'm told that I have an AVF in the region of my cerrebellum. I already had a bleed back in January, so they are telling me that I have a 4% chance per year of another bleed so I should get it treated. An embolization was tried a few weeks ago, but they could not get to it.
My AVF is close to my auditory nerve so if I get the radiation there is a good chance that I will have some hearing loss or balance issues. I'm trying to get a second opinion from Dr Spetzler in Phoenix.
Assuming the second opinion confirms the situation, I'm leaning toward surgery. My doctor said I would be out of work for 4-6 weeks although I could work a few hours a day from home after the second week (I have a desk job). What experience have others had regarding recovery after surgery?
My recovery from surgery involved regaining lost movement - it came back fast (although it surely didn't seem fast to me) and I made a full recovery. I was in the hospital for 2 weeks and then in a rehab hospital for another 4 weeks, but that was 20 years ago, stays these days tend to be much shorter, and I stayed longer than most because I had lost all movement in my left arm and leg after surgery due to a hemorrhage which occurred during an embolization.
There have been a lot of advances in the 2 decades since I had my craniotomy and usually stays are much, much shorter now, but every surgery is different.
If yours goes as planned, expect to feel exhausted during recovery. Really exhausted. Expect to figure that you should be "all better" and be surprised that you still get tired very quickly. Even when I was out of the rehab hospital and back at home with all movement, I would get tired all of a sudden for no apparent reason. It took several weeks after I was discharged to get past the tiredness.
please try to get more opinion from Dr. Michael Lawton from UCSF ( San Francisco ) he is our hero !
he operated my daughter one month ago . 100% success !!!!
You’re doing your due diligence by getting a second opinion. The better informed you are will give you confidence in whatever you decide to do. Please keep us in the loop!
I just received my online second opinion from Dr. Spritzler at the Barrow Group in Phoenix, confirming the diagnosis and that surgery was probably my best option. I just need to work up the courage to go through with this now. It's a hard thing to do, to go under the knife with no symptoms and no deficits knowing that you could come out a lot worse.
Has anyone else used these online second opinion services? They seem too good to be true. You pay $100 bucks, upload your test results and in a few days, you get a response. Should I go and get a person-to-person (or should I say Doctor-to-person) second opinion? Anyone have any thoughts?
I was off work for about 2-3 months & back behind a desk for another 2-3 months as I wasn’t allowed to drive for 6 months…it was hard but not as hard as going through the whole surgery procedure etc… God bless and stay strong!
I am facing surgery for my fistula as well. Mine is not in the same location as yours but rather at the top of my head, dumping into the superior sagittal sinus vein. Fortunately I have not had any bleeds -- I discovered mine when I developed pulsatile tinnitus in my left ear in 2013. Two fistulas were found then -- one behind my ear and one on top of my head. The one behind my ear got successfully plugged with Onyx, but the other one has resisted treatment, so they want to do surgery.
Anyway... what did you think of your response from the Barrow. Was it thorough? I am just wondering because I am uploading my films to them today through their 2nd opinion program.
BTW, I spoke with a neurosurgeon here... he said craniotomies are a pretty safe procedure with only a 1% risk of complications... so hopefully things will be ok for you. My fingers are crossed.
I am 5 1/2 weeks post op, and I feel great. I felt great two weeks after my craniotomy. A little bit tired, but not nearly as bad as I thought I would be. I do have some visual issues (my surgery was on my occipital lobe) but my vision is slowly improving. I initially had radiation done in 2009 and my headaches were so bad the past few years, when I went back to the neurosurgeon he suggested surgery to get the AVM out. I should have done the surgery in 2009 when it was first suggested by my first neurosurgeon.
Hi cricket. Sounds like we are in the same boat. The 2nd opinion from Barrow was only a few sentences. I guess that is what you get for a hundred bucks. I wonder how thorough they were. I’d like to hear how your 2nd opinion comes out.
I submitted my films today, so I'll see what Barrow has to say. Thanks for the heads up on Barrow's second opinion program. I'll keep my expectations low.
One thing I did find out from my insurance company (Anthem Blue Cross), is that they don't pay for online 2nd opinions... just in-office visits. So for insurance purposes, you might want to get some additional opinions in your area -- perhaps through a University affiliated hospital.
Also, US News and World Reports ranks hospitals based on who is the best in certain areas, so you might want to contact your local library to get access to that information.... as most libraries have online access to various periodicals. This might help you find a hospital with a good neuro department in your area-- which in turn will lead you to find a good doctor who works for that hospital.
As for me, I'm planning to get a 2nd and 3rd opinion about my operation because I want to know what they plan to do with the sagittal sinus vein... sometimes doctors remove the vein other times they pack it with glue or coils, etc. Other times they leave it alone and just clip and close off the arteries that are connecting to it.
Sometimes packing it and removing it can be good, but other times it can cause more problems (such as creating intercranial hypertension) than it solves.
The doc I saw on Monday wants to preserve it, but I want to see if others agree or disagree and why or why not. I also want to get someone with more experience. The doc I saw on Monday has only done 12 of these fistula fixes during his career, and I don't feel like that is enough experience.
Anyway I think it's always good to get 2nd opinions when it comes to stuff like this. Good luck to you. If you want to friend me on here that would be great. I also want to hear how your operation goes as I will be getting the same thing done at some point. So do let me know when that time comes and passes.
Hi livingthenighmare, I got a third opinion from Barrows last year, but I didn't do it online. I called their office, talked to a real person, sent the scans on the mail and probably two weeks later, I received a call from them, explaining me step by step what they saw on the scans, etc.
I ended up having a surgery at Barrows with Dr. Spetzler. I think he and his team are very knowledgeable and I felt confident having my craniotomy there because they treat AVM's every other day. That was a huge plus for me.
Anywho, I really think that is a good idea to get a second and third opinion. For my second opinion I went to Wash University hospital in St. Louis. They have three doctors there that specifically treat AVMs and they explained me my options and suggested the gamma knife. While that option is not invasive, I didn't want to deal with side effects of radiation in other parts of my brain.
About recovery after surgery, I was basically sleeping, eating and slowly walking the first three weeks. After that, I slowly gained strength. However, my vision was affected and didn't go back to work until ten weeks after surgery. I went only three times/week, four hours/each day for the first 3 months. Now, I'm fantastic; brain recovery is slow, but it heals. Stay positive!
Hi, did you get your 2nd opinion? I got mine from Barrow in 3 days, they are amazing! I have AVM in occipital lobe spanning into parietal lobe, grade 3-4. Unfortunately I don't have any info to share with you about side effects as I haven't had my treatment yet.I am going in 2 weeks for another angiogram then following up with heavy dose of radiation. I have been told I could lose my vision due to swelling but it's only supposed to be temporary. One of the upsides of surgery is they are more likely to be able to remove the whole thing however your risks of permanent deficit are higher. If you decide on surgery I would highly recommend going to Spetzler, he's the best. Good luck to you!
Get the 2nd opinion or the 3rd and than you can decide. Radiation now a days is so exact that I would not worry about any possibilities of hearing lose or balance issues. I have a right parietal AVM and after diagnosis the options were surgery or radiation my doctors thought radiation is worth trying just to avoid the trauma of surgery. I had the radiation January 27 2015. Up to this day I have not felt anything different. The possibilities having issues with the left side of my body were equal with either procedure. May be you should ask your doctors about that. Make a decision and do not worry about the rest let the doctors worry about it. Of course with radiation I am running the risk of bleeding until it goes away if it does go away.
You're doing the right thing by getting a second opinion.I was given the same options as you. I chose the surgery over radiation because I was told the radiation treatments would take 18 months.My AVM was in the left cerebellum and was 3cm by 4cm(1.5in by 2in).My surgery was on Nov.19,2014 and I haven't returned to work yet.I have weakness on my left side and being an electrician it's not safe for me to work.It's always better to get as much information before making such a important decision. I'm sure you'll make the right one. Stay positive and we'll all be praying for a speedy recovery!
I would want to go with the surgery, especially after a bleed. My surgery was in 1997 and there is so much new since then. I had a long recovery but that was a long time ago. You should be okay to go back to work but everyone's recovery is different. Please let us know what you choose and best of luck!
Get all the information be informed. I had a bleed and have a AVM in cerebellum to deep for surgery had radiation May 7 2015. Have some swelling issues on steroids dose keeps getting reduced because swelling is going down. Hardest part for me is emotional, fatique and balance is still a little off. Headaches are getting better.
My doctors are Scott Tannehill at the Cancer Care Center very informed and thorough at explaining every thing and Marco Marella I had 9 referrals and he was the only one who took my case. They are both in the Phoenix Scottsdale area.
Let us know what you decide. I am curious to know which way you follow. I was exactly in your shoes and it took me over a year to decide what to do. Mine was 2out of 4? or 5? in terms of difficulty to be removed. The neurosurgeon looked at the angio and said it can be removed with some risk it is next to the sense and motion of the left side of the body (right parietal location for AVM around 3cm in diameter). The guy who did the angiogram and specializes in AVM was very convinced and certain that I should do radiotherapy. The radiation oncologist told me that radio would have been her opinion just to avoid the trauma of surgery. It was a long agonizing decision time but once I made it I felt better and to this moment I have no regrets. Of course I do not know the results just yet but at least I did something I did not sit back doing nothing. I realized in the process that you are the only one who can decide. No one can decide for you. I am curious to know what you will decide. Your case is so similar to mine almost identical with the exeption that I did not have a bleed.
