Hi everyone. I haven't been on here in months- I am a teacher, and was fortunate enough to go back to work full time when the school year started this fall. I started seeing a new Neurosurgeon at Northwestern Memorial Hospital in Chicago when my other hospital was stuck on what to do with me. He thinks that the emergency coiling from my SAH/ruptured aneurysm is pushing into my eye where the aneurysm remnants are, and wants to do another angiogram before deciding on next steps. He thinks that they may need to do another surgery. Has anyone had a second surgery after an initial coiling? I am still having pain and irritation from the coiling and just want it to be resolved. I thought since my initial recovery went so well, I would be mainly cured at my 6 month angio and that wasn't the case! Let me know if you have had more than one surgery after a rupture and initial procedure, and what the outcomes were. Thanks!
I can't answer based on my experience but I do know the numbers.
The most current data says 10% of patients will undergo a second treatment to place additional coils, usually within the first year. So while it isn't real common it isn't unheard of. With an emergency procedure, One would think it would be a bit more common. The goal in an emergency is to stabilize and fine tune later.. Hopefully you will get the answers you are looking for and be able to schedule anything that its done to your convienence.
Laura,
I had a rupture which was coiled and went back for a six month angiogram that was done a couple weeks earlier than scheduled due to my misunderstanding county personnel and my insurance coverage. They found another aneurysm which was coiled the next week. Compared to the first, the second was a walk in the park for me. But it was the difference of one night vs one month in ICU. Also I’m someone who likes to be prepared for everything, and I knew the surgeon, the doctors and the nursing staff for the second one. I trusted everyone, especially my neurosurgeon, as they had allowed me to become part of my medical team - I was allowed to ask questions and make suggestions on my medical care after about week three. I was able to do my own personal hygiene for the second one. I was scared for the second didn’t have time to be scared for the first. As for outcomes - after the first I was told I could not go back to work as a social worker due to the stress. It’s a process I am working through. My outcomes are good I think. What has always worked for me is I keep positive so that I think positive. I hope this helps. Sounds like your in really good hands with your Neurosurgeon. I wish I could share mine with the world, she might not like it though.
Laura...so many usual questions...
Have (any of) the doctors explained by:
Which artery?
Which segment of the artery?
What size? Shape?
Why was coil recommended vs open surgery clip?
On the initial coiling, were the images viewed/explained to you on its completion?
Was the aneurysm completely coiled...and/or was the potential of compaction of coils addressed with you?
Were any stents implanted before, during, or after the coiling?
A number of members have addressed these issues at one time or another...i.e. the need for more coils and/or stent implants...
Prayers for those who have had the experience(s) will respond to you...
Pat
Don't get me started on "elective coils" or physicians who are making decisons based on formula, health care administrators who are producing the formulas not to mention the thankfully few docs who explain and counsel by pulling the applicable numbers. But yhats not what this is all about
In my real life I produce those numbers. I have spent thousands of hours trying to teach future docs how to use them. There is always a number to explain another number. So yeah I could break down all of it into enough numbers that I could confuse myself (and I'm not so sure thats what number the number users do to their patients
It makes sense to say year recoils happen often enough that its not unusual. having watched a few emergency coilings I can also say it amazes me that the surgeons can get the first coil(s) placed period let alone not having to tune up the work later more often than they do. Thats where it stops. Anything else could be unnecessarily alarming (or unreal expectations)
Pat has the approach each individual is different. What a persona really need to hear from the doc is that based on HIS experience whats going to happen and what could happen. Numbers are not an answer. Even somebody elses experience is nothing more than what could happen. We need to know what COULD happen. That has no bearing on what will happen.
Let me put his a different way. I am at the end of the day despite what my "job" is nothing more than a math teacher despite who and what I teach. I have statistics coming out my ears. Since I was 10 I have tried to learn poker. I know every "odd" on the table You need a two to make a hand? I can look at the up cards an tell you with near 100% certainty what your odds are of pulling it. My brother in law can do the same. He won the world series of poker a couple years back and played professionally for years. I can't even hold on to my stake in a neighborhood game until the snacks come out. Knowing the odds/numbers is one thing I've got that cold, knowing how they apply to a specific situation not so much. that ability makes the difference. My one in 6.5 chance of pulling a single card for an straight means nothing if the guy next to me has 1 in 4 chance of pulling a single card for a flush. Were I a poker player not a numbers guy I would have picked up earlier thats exactly what hes up to.
Like Pat says there are lots of things to consider.
AndreaLynn said:
Hi Tj1,The percentages of coiled aneurysms that will need re-coiling in the future, if they've leaked, ruptured or are wide necked, are more in the range of %25. Aneurysms that have not ruptured , not leaking and are not wide necked, the percentages do decline to roughly %10. Many are not aware of these percentages before their procedures (but many don't have a say so when in an emergency situation of course) . I believe these percentages should be fully explained as many of the coilings are elective nowadays, and many are simply told that the procedure itself is 'non-invasive". The extreme importance of the rate of re-coiling is alarmingly misrepresented and very much under-stated.
Regards,
Andrea Lynn
tj1 said:
I can't answer based on my experience but I do know the numbers.
The most current data says 10% of patients will undergo a second treatment to place additional coils, usually within the first year. So while it isn't real common it isn't unheard of. With an emergency procedure, One would think it would be a bit more common. The goal in an emergency is to stabilize and fine tune later.. Hopefully you will get the answers you are looking for and be able to schedule anything that its done to your convienence.
Yes, I had a crainotomy, clipping surgery 2.5 years after initial coiling. Check out my page.
I don't even understand what you are saying, tj1. Like Andrea Lynn, I have read repeatly from brain surgeons that the figure is more in the 25-30% rate for 2nd surgeries to recoil. My original surgeon also gave me those figures, but he did say for me there was more risk that another annie would form in the same location (typical of basilar tip annies, he said). I did have a stent placed and just passed my 3 yr follow up, which my new surgeon told me I would need every year.
tj1 said:
Don't get me started on "elective coils" or physicians who are making decisons based on formula, health care administrators who are producing the formulas not to mention the thankfully few docs who explain and counsel by pulling the applicable numbers. But yhats not what this is all about
In my real life I produce those numbers. I have spent thousands of hours trying to teach future docs how to use them. There is always a number to explain another number. So yeah I could break down all of it into enough numbers that I could confuse myself (and I'm not so sure thats what number the number users do to their patients
It makes sense to say year recoils happen often enough that its not unusual. having watched a few emergency coilings I can also say it amazes me that the surgeons can get the first coil(s) placed period let alone not having to tune up the work later more often than they do. Thats where it stops. Anything else could be unnecessarily alarming (or unreal expectations)
Pat has the approach each individual is different. What a persona really need to hear from the doc is that based on HIS experience whats going to happen and what could happen. Numbers are not an answer. Even somebody elses experience is nothing more than what could happen. We need to know what COULD happen. That has no bearing on what will happen.
Let me put his a different way. I am at the end of the day despite what my "job" is nothing more than a math teacher despite who and what I teach. I have statistics coming out my ears. Since I was 10 I have tried to learn poker. I know every "odd" on the table You need a two to make a hand? I can look at the up cards an tell you with near 100% certainty what your odds are of pulling it. My brother in law can do the same. He won the world series of poker a couple years back and played professionally for years. I can't even hold on to my stake in a neighborhood game until the snacks come out. Knowing the odds/numbers is one thing I've got that cold, knowing how they apply to a specific situation not so much. that ability makes the difference. My one in 6.5 chance of pulling a single card for an straight means nothing if the guy next to me has 1 in 4 chance of pulling a single card for a flush. Were I a poker player not a numbers guy I would have picked up earlier thats exactly what hes up to.
Like Pat says there are lots of things to consider.
AndreaLynn said:
Hi Tj1,The percentages of coiled aneurysms that will need re-coiling in the future, if they've leaked, ruptured or are wide necked, are more in the range of %25. Aneurysms that have not ruptured , not leaking and are not wide necked, the percentages do decline to roughly %10. Many are not aware of these percentages before their procedures (but many don't have a say so when in an emergency situation of course) . I believe these percentages should be fully explained as many of the coilings are elective nowadays, and many are simply told that the procedure itself is 'non-invasive". The extreme importance of the rate of re-coiling is alarmingly misrepresented and very much under-stated.
Regards,
Andrea Lynn
tj1 said:
I can't answer based on my experience but I do know the numbers.
The most current data says 10% of patients will undergo a second treatment to place additional coils, usually within the first year. So while it isn't real common it isn't unheard of. With an emergency procedure, One would think it would be a bit more common. The goal in an emergency is to stabilize and fine tune later.. Hopefully you will get the answers you are looking for and be able to schedule anything that its done to your convienence.
I had a coiling done to a ruptured SAH in Oct 2011 and had a recoil with a Stent placed I April 2012. So far things are ok except for some headaches that stress and tension brings on at the middle of the work week and now I am having a lot of numbness in my hands and arms. It started with just my finger tips and now it has moved to my hands and arms. Hope this helps.
Blessings to you.
Tiffany Davis.
I haven't had a 2nd surgery, but wanted to wish you luck. I have talked to lots of people here that have had 2nd surgeries or more, so it is not uncommon. I hope you have the angio soon so that everything can be resolved - not only with your pain, but with fear of what is happening. Not an easy thing when it is your brain! Good luck, Sherri
I really don't need or want to split numbers. The long-term success of endovascular coiling to treat aneurysms is about 80 to 85%. Aneurysm recurrence after coiling occurs in 34% of patients. Recurrence happens if coils do not completely block off the aneurysm or if the coils become compacted within the aneurysm. A recurrence may not be significant enough to require additional treatment. If a major portion of the aneurysm remains unfilled, additional coils or a surgical clip can be placed to stop the growth.
Overall, 10% of patients will undergo a second treatment to place additional coils, usually within the first year. That would be to the initial annie not subsequent annies.
Molyneux AJ, et al. International subarachnoid aneurysm trial (ISAT) of neurosurgical clipping versus endovascular coiling in 2143 patients with ruptured intracranial aneurysms: a randomised comparison of effects on survival, dependency, seizures, rebleeding, subgroups, and aneurysm occlusion. Lancet 366(9488):809-17, 2005.
Reoccurence doesn't always lead to treatment or recoiling. The 25% figure which I have heard also includes subsequent clipping.
Now I may have misunderstood and thought laura was asking how common that the initial coiling need additional surgery and not what her life prognosis was. I didn't think it was necessary to alarm her with information that may or may not apply. (and given the location of her annie likley doesn't)
Hi Laura, I had a second operation after an initial emergency coiling. At the 6 month follow up they found that the ani had blood circulating in it where it should not. My surgeon gave me a choice between a follow up coiling with the addition of a stent or open brain surgery for clipping. After a lot of research I opted for the clipping. The overall risks where about the same, less than 2.5 percent chances of serious complications, but with the clipping I would not have to take blood thinners or have to worry about the stent or coils clogging or moving. Coming up on 3.5 years and no further complication and do not need a follow up MRI until the 5 year mark. Just something to consider if your Doctor thinks clipping is possible. I was only in the hospital for 3 days after the clipping. Good luck with whatever you decide.
Hi, Sherri, I think tj1 means that all annies are not equal, but since statistics makes it sound like they are, statistics can be misleading to patients and aren't the best guide for determining an individual's treatment. I'm glad you passed your three-year followup -- that is great news.
I'm far from the expert on BA here, but you have a man who teaches future Doctors, trying to reassure you. That is worth listening to!
Hi - I just had a recoiling done last Thursday and my initial SAH was this past February. Had an MRA at 6 months and the neurosurgeon wanted an angiogram to confirm the coils had compacted. Seeing the results of the angio the neurosurgeon felt I could have another bleed at some point. My options were to wait and see, clip, pipeline device in January or recoiling. Clipping really was not an option due to my aneurysm being too close to another artery and if damaged could cause paralysis. So, I opted to have the recoiling done now and will follow up in January. I'm hoping it has solved the issue but we will see in January! My initial recovery went well too so I was surprised by this coming up but have since read that compacted coils are common. As far as the percentages of coils compacting, I don't care. It happened to me and whether it's 10% or 25% its irrelevant to me so I hope that debate is over with the comments. Anyway, I don't recall this issue being addressed as a possibility but my memory is suspect still so it could very well have been discussed and I just don't remember. No emergency this time so I was in the Neuro ICU for 1 day and regular floor for 2nd day and then home. The only thing I had to deal with when I woke up was nausea from the anesthesia and not being able to pee after from that damned anesthesia! I still get headaches everyday but not bad ones and felt kind of beat up after but as many pointed out to me I don't have much of a memory of the first time so pretty much hard to compare. But I will say my memory seems worse in some ways, there is lingering nausea and food tastes different. However, I do recall feeling nauseous for some time the first time so maybe this isn't isolated to this at all! I'm back to normal activities pretty much but not lifting anything over 20 pounds for a week but have not returned to work since this all started back in February. Working on that now. I made my decision to have the recoiling done because I couldn't deal with waiting and seeing. I can deal with getting a little behind with my recovery but I have a 17mm aneurysm which is pretty big so this seemed to be the best for now. If I need something else in January I will do it but I feel more assured now about a return to work even if it will be part time. I hope this helps a little. As with the recovery, everyone's treatment is different so have the angio and see what they say. Sorry for the rambling. One of my "deficits" I wish you the best with your decision and please keep in touch!
Great Post Wendy. One thing is clear to me. Your involvement in your treatment and determination to fight back has had a great effect on the outcome as has your tremendous spirit.
Thanks tj1! I feel terrible I was losing patience with the percentage discussion and admit I skipped some of the conversation before I started my post. Less patience is another one of my deficits! and so I jumped into the fray. I wasn't trying to dismiss the importance of having the facts and figures but for me I had to mostly go with my instincts and just maybe a little fear crept in there! Your post is sweet and I really appreciate your kind words.
Rugel...thank you for sharing this...I was coiled and stented off-label and off-record...except for billing and certain angio images...
Of the greatest interest/concern of mine...on coils/stents...are the applications to and the review/approval of the FDA on these devices...because they do not address the arterial access, arteries with tortuous turns and more...More recently (apx April) the voluntary recalls of some stent (PED?) and a retrieval device...Of those, I do not recall ever having been explained to a patient during the recommended procedures...and, the potential need for what may be retrieved...
If anyone has had information provided on this, it would be great if they share it here for others...
Even in the voluntary recall data, there was no definitive explanation...including the CPT (current procedural terminology) used for the billing... I attempted finding it on the AMA CPT site and I could not put in the right "keywords"...to secure the CPT code...presuming there is one..
I have no expertise...lots of experiences...including...coils/stents definitely take more f/u than the usual open surgery/clip...
My coils in my ruptured aneurysm compacted. Had to go back and add more.this was after 1.5yrs. My unruptured aneurysm didn’t need any new ones. I went back to work full time after a few months of part time work. Overall I am very blessed. If we have to go back & add more I look at it like I do car maintenance. At50,000 miles you have to have something.
Why not start a new discussion. I'll see if I can help there is only one stent device currently FDA approved in the US. That may be why the coding is complicated. A lot is off label or adapted by aggresive and inovative surgeons.
pat.om@frontier.com said:
Rugel...thank you for sharing this...I was coiled and stented off-label and off-record...except for billing and certain angio images...
Of the greatest interest/concern of mine...on coils/stents...are the applications to and the review/approval of the FDA on these devices...because they do not address the arterial access, arteries with tortuous turns and more...More recently (apx April) the voluntary recalls of some stent (PED?) and a retrieval device...Of those, I do not recall ever having been explained to a patient during the recommended procedures...and, the potential need for what may be retrieved...
If anyone has had information provided on this, it would be great if they share it here for others...
Even in the voluntary recall data, there was no definitive explanation...including the CPT (current procedural terminology) used for the billing... I attempted finding it on the AMA CPT site and I could not put in the right "keywords"...to secure the CPT code...presuming there is one..
I have no expertise...lots of experiences...including...coils/stents definitely take more f/u than the usual open surgery/clip...
Hi Laura, I'm soooo sorry that you are having to deal with this. I had a rupture and clipping 10 years ago and 2 years ago, it redeveloped into a fusiform aneurysm so I had the pipeline embolization device or PED for short. While it wasn't as invasive as the clipping, there's still a lot they don't know about this pipeline. I was having mini strokes and mini seizures but my aneurysm shrank 85-87% and I have to go back in for an angiogram myself soon. I would do some research and seek a couple of opinions. The first neurosurgeon I saw for the fusiform wanted to pack it with coils and after seeing another surgeon and speaking with many, I found out that coiling was the WORST option and could have killed me........ So there is no easy answer. Just plan on being your own advocate because unfortunately we cannot solely depend on the doctors. My overall outcome has been good, considering most do not survive a rupture. My prayers are with you!!