Ive posted before under the heading…Advice Needed Please. Just need some advice on what questions to ask the Neuro Surgeon on our next visit? Hubby has an appointment on the 16th June. He previously saw the Consultant last year and at the time decided to watch and wait. Since then he has had numerous headaches so our GP asked the Neuro Surgeon to bring the MRI forward. This showed the annie was still the same size 4.5mm and hadnt grown.
Now hubby is thinking about having the coiling procedure. We know about the risks of stroke, brain damage etc but is there anything else hubby should be discussing with the surgeon?
Also, hubby is currently having recurrent UTI’s due to kidney stones and due to see the Consultant next week. I was informed that kidney disease is common in patients with aneurysms! Obviously, hubby needs to deal with one thing at a time so get these stones sorted before having coiling. But he could go on the waiting list which is approx 3 months to have the coiling procedure.
Any thoughts please?
I cannot give you many questions to ask your neurosurgeon however, can empathize with your situation. I was treated for a rare cancer last year with extensive treatment. I got the news that I was cancer free to find out a week later that I had a 6mm aneurysm. I am 75 years old and live in San Francisco and a patient at UCSF where I get excellent medical care so, I do have confidence in my treatment. One question that you may want to ask is, how many procedures has he/she performed? You want definitely want an experienced surgeon. I also made sure that I could tolerate the anesthesia.
I personally am an anxious person. Unlike some people, I stressed out knowing that I had an aneurysm that could rupture at any time and any place. This put my life on hold. As your husband, I also have a history of headaches and an uptake in frequency especially after the diagnosis. My doctor recommended a coiling procedure. I did my homework referring to many reputable websites to educate myself and build confidence about my decision.
I had the procedure two weeks ago. I had no complications, was released from the hospital the following day and have had fewer headaches. This procedure can cause complications but I decided I could better move on with my life than to worry about flying or going to the desert where it could rupture and I was away from medical attention.
Having multiple medical issues within the last few years, I found myself not necessarily sharing my worries with my husband and that in itself can put up a wall between you coming out as anger. I have a very supportive husband who has taken excellent care of me during the past few years however, I asked him to let me do the things that I can do. I don’t want him resenting me because he does it all and I need to move forward in taking care of myself. Care giving is a very stressful job with little rewards. I try to keep an open line of communication with him. Health issues are not easy to live with.
I have been a volunteer at UCSF for many years. Neurographic Art was developed specifically for patients dealing with serious often life threatening illnesses that helps relieve stress and anxiety. There are programs on YouTube that describe the simplicity of the art and anyone can do it.
Good luck with your decision making with better health in the future.
Thank you for your reply. When we last saw the Neuro Surgeon he reassured us that he’d done this job for 25yrs and is very experienced. At the last visit I was ill with the flu and I barely asked anything as I felt so unwell. Hubby is the quiet type anyway and didnt say much. We were in and out within a few minutes!
Multiple health issues are worrying and Ive noticed hubbys anxiety levels have increased. Our GP put him on beta blockers to help with the headaches and calm him down…it seems to have helped. My husband is also the same age as you. He is quite active and often potters around in the house doing diy or fixing the family cars (hes a retired mechanic). His memory is poor though and hes had x 2 tiny TIA’s in the past which he didnt know about till he had a CT scan some years ago. He had sepsis in 2017/18 after a routine hip replacement operation. I spent 9 mths caring for him full time as he was very poorly.
I try my best as a carer both for hubby and at work. I do get the brunt of his anger though!
Thank you for your advice. Hope your health improves too.
Elaine.
Your husband is lucky to have such a supportive wife. No doubt you are also concerned for his well being. You went through sepsis which is indeed scary and now onto another scary diagnosis. Sometimes we don’t seem to get a break. Coming out of COVID and trying to add some normalcy to your life and now dealing with this is really stressful. Good news is your doctor is experienced. Like I told me doctor “ I like confidence in my brain surgeon and airline pilot”.
I was fearful of going through the coiling procedure especially since I have had other medical issues after treatments. Having gone through sepsis, he no doubt is doubly anxious. My family members have also had kidney stones which are really debilitating. You have a lot on your plate now. It sounds like you are in the UK but you should have access to YouTube which has some excellent videos on coiling procedure. Cleveland Clinic has a good one. I am the kind of person that needs to understand what is happening. It really helped me come to terms with the procedure.
Interesting, my doctor didn’t give me a lot of time either. Once again pilot/surgeon -
I think, but don’t know for sure that it’s ADPKD (Autosomal dominant polycystic kidney disease) that is related to aneurysms. It’s a good thing to ask his surgeon and how it will affect the coiling procedure, if at all. Ask the surgeon what he can do to make it easier, mine likes me to be hydrated as it helps the catheter navigate through the arteries she goes through to get to my brain. We also like to know how long the procedure will be, recovery time, how long will I stay in hospital (usually overnight) restrictions afterwards as she usually adds to my list. If I recall correctly, you had a problem with his driving so you might want to ask about that.
Yes the ADPKD sounds familiar. I had a chat with a Neuro nurse and she mentioned the kidney disease. We need to get this under control before he proceeds with coiling.
Thanks for your message Moulroub. I will make a note of the questions and ask when we see the surgeon.
@Gemini30
I would like to ask the neurosurgeon if the other health problems that your husband has will be a problem for the upcoming neurosurgery. He or she might want you to get in contact with the GP to sort this out and perhaps ease your minds.
One thing is for sure, if a ruptured aneurysm can be avoided that’s the best course of action. All of us on this site who have had ruptured aneurysms wish it never had happened. It changes our lives forever if we are lucky enough to survive.
For someone with other major health problems I think a rupture would be hard to recover from. Remember that the coiling is described as a “non invasive procedure” but it’s scary to know that someone will poke around inside the brain. Six months after my ruptured aneurysm I had an additional stent and coils inserted in the artery as it couldn’t be fully repaired when it bled. I was anxious and hesitant but I also knew that it had to be done, I couldn’t live with the fear that it might rupture again in the future. The day came and everything went as planned. I went home the day after the procedure on my 66th birthday. My aneurysm is now fully occluded and I will see my neurosurgeon in two years. If I ever have to do this again, I would not be happy but I would definitely do it, it wasn’t as bad as I thought. That is something that you can tell your husband. We are all different but that’s how it was for me.
I know that the neurosurgeons do this for a living, all day long. Removing blood cloths from people’s brains or mending ruptured and un-ruptured aneurysms.
Thank you for sharing this particularly because I too am a very anxious person. Still waiting for a consult with a neurosurgeon and feel my life is on hold. So encouraging to hear you had surgery without complications. I definitely will look up the art mentioned- I’ve never heard of it before. Again, thanks!
You are like me in so many ways. I also have weight issues and have multiple medical problems that are tied to weight, I don’t believe that weight can cause aneurysm (hopefully). I really surprised myself when I turned to art during COVID. I have found an outlet that really relaxes me and takes my mind off my medical stuff. As mentioned, I volunteered at UCSF in the cancer department which recommends using art as therapy. I found that it takes my mind to a different place and I would forget about my headaches and health issues.
Recovering from cancer can not compare to the loss of a sister which was no doubt devastating. I have read there is a hereditary link to aneurysms so it was good they caught it. Also as stated, I am an anxious person. I knew the doctor would take a wait and see or treat the aneurysm . When I met him, he had already come up with his recommendation. He suggested treatment. In my case, coiling was the answer. I can now move forward and begin again knowing that I am cancer and aneurysm free.
I know this is a public forum but would be happy to give you some simple tips on how to start to use art as an escape.
I had a Resident come in when I had my stent installed who was working on a theory about obesity and aneurysms. I’m a bit heavy, lost no weight in 26 days of NSICU but I think it was during the second week she ordered a different scan and found I have a pituitary adenoma. Anyways, the Resident asked permission to do an ultrasound on my left thigh which I consented and was very excited to be part of her research. She became confused when she found no fat in my large thigh. I suggested she try the other one (I was a bit stoned still). She did, and again no fat. I was extremely apologetic for blowing her theory:crazy_face:
If you want, you can always start a new topic on art. I imagine many of us can profit from your knowledge and experience!
Wow! 26 days in the NSICU! And, I cannot imagine them not finding fat in either of my thighs. I believe it was also you that referenced a link to autoimmune disease. I have a couple. Thankfully they usually stay under control but I wonder if there could be a link.
I appreciate your suggesting writing about art used to control stress and anxiety. I will put my brain to work and get something out on the topic.
I was surprised as well even though my Neurosurgeon once told me during an angiogram that I didn’t need to apologize for my fatty thigh, there wasn’t any, who knew?
I can’t wait to read your topic on art! I do hope you find the time. When I did some counseling over the phone, the therapist suggested I do simple coloring books as I was really frustrated that my brain wouldn’t hold a picture in it and was stopping me from carving. If I couldn’t figure out where the knife went, how could I safely carve something? I’m learning to carve again and have done a few comfort birds. But I started with chopsticks using a jig, I do hope one day some of our members will learn the importance of art and music in our healing journey.
I sent it. I can’t imagine maneuvering with a sharp object. The only thing I would cut would be my hand. I have made a couple attempts painting birds and am thankful that abstract can be used on all things painted. Isn’t great to have something you enjoy doing.
You did great! My first carving class, Mr. Don taught me to use a carving glove LOL. After I ruptured, I went back to the store to see if he could reteach me but he wasn’t around anymore. When I asked one of the women who worked for the company and not the store, she share that there was a new carver that he didn’t like join the group. I knew him from when I worked and he wasn’t my cup of tea either. Unfortunately the gentleman who used to teach bird carving through the local college had died so I couldn’t go to him either. I learned to use YouTube and there’s two I can follow that makes it easier.
Here are some potential questions you could consider asking the neurosurgeon during your next visit:
Can you explain in detail what the coiling procedure involves and how it works to treat the aneurysm?
What are the potential benefits of the coiling procedure for my husband’s specific case?
What are the potential risks and complications associated with the coiling procedure?
How experienced are you in performing this procedure, and what is your success rate?
Are there any alternative treatment options available for my husband’s aneurysm?
What is the likelihood of the aneurysm growing or causing further complications if we choose not to proceed with the coiling procedure?
How long is the recovery period after the coiling procedure, and what can we expect in terms of my husband’s overall health and quality of life afterward?
Are there any specific lifestyle changes or precautions my husband should take after the procedure to minimize the risk of complications?
Are there any long-term considerations or follow-up appointments necessary after the coiling procedure?
Are there any support groups or resources available for individuals who have undergone the coiling procedure or are dealing with similar medical conditions?
Based on my personal experiences I would recommend getting a 2nd opinion before making a final decision, if that is possible in your husband’s situation, with a neurosurgeon that does both endovascular coiling and clipping surgeries. I learned there are some aneurysm locations that are better suited to one or the other. Which it was in my case that I learned after the initial coiling (posterior communicating artery aneurysm). Mine ruptured before being repaired (twice) so mine is very different from your husband’s but if a 2nd opinion is doable it would give you both more confidence in the final decision. I wish the best to your husband!
