I posted before about having the option to have an elective procedure to deal with my aneurysm. Left internal carotid tip. My surgeon was very blase’ which I guess is kind of good He thinks watch and wait, but for many reasons (the main one being I am at a high probablility of retinal detachment in the not too distant future, and I’m worried that the emergency op for that along with the stressful circumstances will make my blood pressure spike horribly. My BP always spikes way too high after surgery. I also get bad chest infections with my asthma - hence violent coughing) anyway to get back to the point he didn’t want to discuss options in detail until I decided I was definitely having surgery. The problem is if I knew a little more of what to expect it would be easier to make the decision… He said both procedures were equal in risk and hospital stay?!! but recovery from coiling and stenting is about a week and from craniotomy about six. Would it be over optimistic to believe him when he says I will be back to normal after six weeks after craniotomy? and ready to take on a lively three year old five days a week? Can anyone share their elective craniotomy experiences? I am really struggling to find any narrative that describes an unruptured craniotomy recovery chronologically. I understand that everyone has a very different experience, but would so appreciate any experience people feel able to share. Many many thanks
I had a craniotomy 10 days ago and I feel surprisingly well. I had bad headaches and fatigue for about 5 days, and since then I’ve been steadily improving. I went for two 30 minute walks yesterday. My staples are out tomorrow. Not saying everyone has these results but it isn’t all bad!
So it appears you have chosen a doctor to go with?
It appears his approach is one step at a time. Thats good. You really need to follow his lead. The only thing you should be dealing with at this point is whether or not you are going to have the surgery. Thats obviously what the Doctor is wanting you to do. The two procedures are not equal. there is always more risk with an open procedure than a non invasive, and always more risk the longer one is under anesthetic and deeper anesthetic. Anesthesia is always the greatest risk in operative procedure
When it comes time for the actual procedure there is a lot more that goes into it than an either/or. Most of the time the decision isn't made until very shortly before surgery and is made from some some kind of an evidence base. Forgive me I don't remember what pressures or your nuclear studies showed or even if they have been done yet. Most protocols don't do the nuclear studies until just before the surgery. The results of those studies will likely take the much of the decision out of both your hands. As hard as it is to believe docs have rules to follow. For that matter getting an elective procedure past the NHS review commitee may be trouble too.
So before you get so many balls in the air that you can't keep them there. You need to take the first step which is to decide to have the procedure or not. Assume that it will be the craniotomy as circumstance could dictate that is what it will be.
Kit34 said:
That's good news! What an amazing recovery. Good for you :) I guess it may not be quite as easy for me (but I hope so) I'm a 57 year old woman, not in the best of health. I have had a long term severe B12 deficiency and it gave me many symptoms that caused me to have the scan which found the aneurysm. ( I guess it did me a favour in a way) but I'm really fatigued most of the time. Not sure if that might be to do with the aneurysm though? Lovely to hear your story (keep us informed) and thanks for taking the time to reply.I had a craniotomy 10 days ago and I feel surprisingly well. I had bad headaches and fatigue for about 5 days, and since then I've been steadily improving. I went for two 30 minute walks yesterday. My staples are out tomorrow. Not saying everyone has these results but it isn't all bad!
I have chosen the doctor (although I think I would be happy with either). The surgeon thought that either procedures should be an option after looking at the MRA. He is a surgeon at the 'top of his game' and although it doesn't make sense to me either he says both operations carry the same risk with obviously a longer recovery time for the craniotomy. I have heard that a few other surgeons from the UK have the same opinion. I have no idea what pressures or nuclear tests are so I'm sure I haven't had them done! :) It's not being done on the NHS so, fortunately that's not a problem. Thanks for taking the time to reply it's given me much to think about.
tj1 said:
So it appears you have chosen a doctor to go with?
It appears his approach is one step at a time. Thats good. You really need to follow his lead. The only thing you should be dealing with at this point is whether or not you are going to have the surgery. Thats obviously what the Doctor is wanting you to do. The two procedures are not equal. there is always more risk with an open procedure than a non invasive, and always more risk the longer one is under anesthetic and deeper anesthetic. Anesthesia is always the greatest risk in operative procedure
When it comes time for the actual procedure there is a lot more that goes into it than an either/or. Most of the time the decision isn't made until very shortly before surgery and is made from some some kind of an evidence base. Forgive me I don't remember what pressures or your nuclear studies showed or even if they have been done yet. Most protocols don't do the nuclear studies until just before the surgery. The results of those studies will likely take the much of the decision out of both your hands. As hard as it is to believe docs have rules to follow. For that matter getting an elective procedure past the NHS review commitee may be trouble too.
So before you get so many balls in the air that you can't keep them there. You need to take the first step which is to decide to have the procedure or not. Assume that it will be the craniotomy as circumstance could dictate that is what it will be.
There you go. Progress! Picking the Doc is tough.
AND good you are out of the NHS review process.
Shaz49 - have you had an angiogram? That is the test most doctors here in the US use to decided the best way to deal with your annie. It sounds as if you have heard from other survivors in the UK, which is great. I have never had a craniotomy, just coiling/stent, so I am not qualified to answer your questions about it. Glad to see you have chosen a doctor, at least that is part of the battle. I am still baffled about the doctor saying the risk is the same for either surgery, though. That is not what they say here, but then again, it also depends on each individual annie and location.
Good luck - keep us informed. Sherri
Sherri Long said:
Shaz49 - have you had an angiogram? That is the test most doctors here in the US use to decided the best way to deal with your annie. It sounds as if you have heard from other survivors in the UK, which is great. I have never had a craniotomy, just coiling/stent, so I am not qualified to answer your questions about it. Glad to see you have chosen a doctor, at least that is part of the battle. I am still baffled about the doctor saying the risk is the same for either surgery, though. That is not what they say here, but then again, it also depends on each individual annie and location.
Good luck - keep us informed. Sherri
Hi Sherri I have had an MRA without dye, which I was led to believe was adequate. I really don't understand the idea of the risk being the same at all either. But I have heard that other surgeons have said that "brain surgery is brain surgery, so it's just a question of different access routes" All very confusing.
Neuro guys have a very narrow range of reference.
They will do more diagnostics before surgery. Thats why I keep saying the only real decision at this point is whether or not to have the surgery. A non-contrast MRI is sufficient for diagnoses. I have also seen the decision made operatively.
This was an MRA which I believe is a magnetic resonanace angiogram. Which I believe shows the pressure and condition of the blood vessels. I presume that's like an angiogram? what other tests do they need to do? Getting worried now! :)
MRA uses magnetic Imaging. (Its really an MRI) It produces beautiful pictures but it does not show blood flow. An angiogram is a procedure that uses a special dye (contrast material) and x-rays to see how blood flows through the brain. How this blood flows will determine in large part whether or not coils will work and stents need placed. depending on your facility that stenting and coiling could actually happen at this time as they already have the necessary catheter placed. In fact that may actually be done by the interventional Radiologist..... They can also measure the pressures on the annie its self whick helps them determine whether a clip is necessary or not.
An over simplification of coiling/stenting is they are inseting a piece of window screen over the top of the annie, As the blood flows by some of it gets stuck, clots and in effect builds a new blood vessel. The purpose of the stent is to keep the coils from over doing the job.
Thats one of the reasons I believe your doc is not being terribly specific beyond recovery times and waiting for a yes or no in regards to the surgery He doesn't want you making a decision based on what may or may not happen....... Imagine going in thinking all it is is a coiling and circumstances are such the the clipping is necessary and you had decided based on coiling is fine but no way a craniotomy and clipping......
Thanks tj and Edwardo definitely food for thought x
Shaz49 - I'm sorry that one of us has not explained an angiogram. MRA shows the annie as a still pic. Angiography enables the doctor to see the blood flow and get a more clear picture. It actually is fascinating to watch.
There has been at least one survivor who received their first angiogram at the same time she also was coiled. For most of us with unruptured annies, our neurosurgeons conducted an angiogram after the initial diagnosis through MRA or CT to get a more clear picture of the best surgical procedure. My neuro would not recommend coiling/stenting until after the angiogram.
With angiography, they insert a tube into your femoral artery in your upper thigh. This tube is guided to the brain and the neurosurgeon (or in some cases a radiologist) then releases dye in the areas they want to study. This is a painless procedure - the only thing that most people feel is the numbing of the upper thigh before the tube is inserted. The patient does have an IV inserted and is given a mild sedative to relax, but most people are awake throughout the procedure. You can actually watch some of this as there are several large screens that the doctor watches as the test progresses. When they are finished, I was wheeled into recovery. After about 15-20 minutes, the tube is taken out - there are several different techniques that are used at this point to seal the artery and stop the bleeding. My doctor has the technician apply pressure for 15-20 minutes. Other people have had plugs put in and others have had stitches. In my case, I was left in recovery flat on my back for 4 hours to make sure the artery does not open back up. I have heard other people who were plugged say that they were only there for 2 hours - it really depends on how your facility and doctor closes the artery. They do ask that you be careful for the next few days and you are also restricted from lifting heavy items - my doctor told me I could not lift more than a gallon of milk for 7-10 days. The upper thigh is sore for a several days afterward.
An angiogram sounds a bit intimidating, but it really is the "gold" procedure. I assume you will be seeing your doctor to let him know your decision and I would ask if he is planning on doing an angiogram. It's pretty standard procedure in the US, even if the annie is being clipped. If you decide on coiling, then that is done via angiography.
I hope this helps you understand the difference and also what the test entails (and hopefully my description is not confusing!). You can also look up more info on bafound.org. It sounds as if you are happy with your choice of neurosurgeons - I think it is really important to feel comfortable with your surgeon. Do you have another appointment to discuss the surgery in more detail? Most of us are stressful/worried prior to the surgery, but I think all of us would agree that having surgery really did bring peace of mind.
Sherri