Hi @Nellyb
As you can see, everyone’s experience is different. Like you, I felt really scared at first. Then the doctors gave me choices that scared me too. The hardest part for me was making the actual decision. Fortunately, I had a very good neurosurgeon who was also very patient. He explained the options very thoroughly to me and answered all my questions. He recommended stent-assisted coiling and explained why he felt that was better than clipping.
So, here I am 2.5 weeks out from a stent-assisted coiling procedure. Mine is at the bifurcation of the ACA and AcomA in the front of my head. I have two stents and 4 coils. The surgery took almost three hours. I am on Plavix and 325mg Aspirin. I follow up in three months with an MRA. They may stop the Plavix at that time or they may extend it for another three months. I’ve been told up front that I will likely continue on the 325mg aspirin for life. I haven’t had any problems with either medication. Just some minor bruising.
In the last 2.5 weeks I have had good days and bad days – mostly good days but I am also off work right now for summer break and feel a bit nervous about going back to my high-stimuli job. Since the surgery I have less headaches than I had prior so that’s a positive. On the good days, I feel really good. However, I am experiencing sensory overload at times. I’m glad Audrey shared the video on “flooding” because that describes it pretty accurately. I was not expecting this as I did not rupture and doctors tell you that you should be just fine after these procedures. I personally think everyone’s brain reacts differently because we are all different and every aneurysm is different. Yesterday, I did too much physical activity, including bending forward to push a couch, and I had immediate pain in my head that progressed into a whopper ocular migraine that affected my whole left side. Everyone is different.
Anyway, I think the best advice I can give is to do what you’re already doing - seek support from people who know what you’re going through. Everyone here was a great help to me as I was going through the pre-surgery processing.
Hello Nelly,
As others have said you are very lucky that your aneurysms haven’t ruptured, that they have been found, and that there is a plan for treatment. I know the waiting is hard but please try to take care of yourself and stay calm. You will get through this and get your life back. Its important for you to have good support, especially post-surgery so perhaps planning for after the surgery is the best way to fill your time now. You will need time and quiet to recover and it may take several months. I had a burst aneurysm almost three years ago and thanks to that a second one was found which is not being monitored. I am now mainly recovered from the burst one but my life will never be the same, just different. In a lot of ways it is actually better as I have had to slow down and restyle my life which has given me a chance to find new things to appreciate. This community is also great for support so please use it to express anything.
I’m 38 and discovered an unruptured 6mm annie earlier this year. I have two kids 8 and 4. The annie was discovered in January, and a Pipeline put in place in April. I went through the same frightening swirl of awful emotions and let me tell you, the waiting is the hardest part. The pipeline procedure was actually easier for me than the angiogram, and I was back to myself in only a few days.
Everyone else already left such good advice. Hang in there, focus on how lucky you are to have found them before they ruptured, that we have amazing medical technology where they can fix them through an incision the size of a pencil eraser, and that soon you’ll be on the other side of this, and have the situation under control! I also had my procedure in Boston, and you will be in the hands of the experts in the field! I know its really hard now, but it will get better soon.
If I could have changed anything, I would have done anything possible to schedule the procedure earlier - I decided to delay it a bit due to some other plans, and sooner would have made the mental anguish side of things that much shorter.
Hang in there - you are stronger than a little bubble (think of how small 4mm really is). You got this!
The Mighty and all powerful Lord is with you and will go before you and guide you through this challenging time Nelly. Never doubt that,and keep trusting Him to take care of everything for you.
I was so worried before my coiling, so I know the extreme anxiety you must be feeling. I cant speak for your particular anneurysms, because only your doctor has images of them, but I know the likelihood of immediate rupture is extremely, extremely low for most people—this is what my doctor told me, as I waited 6 months for my coiling (I was in the middle of breast reconstruction surgery for breast cancer, so I had to wait awhile. I know this group has a statistically high number of ruptured anneurysms in it, but most unruptured anneurysms that are diagnosed don’t rupture before they get coiled.
My procedure turned out fine (except for bad headaches–even still 2.5 yrs out), but I have hope they will get better and I’m still alive! I was grocery shopping within 1 week, because its not that invasive a procedure. Your leg will be sore for few weeks again. I stayed 2 nights in the hospital, but typically it is only overnight. No personality changes with me.
I wish I had trusted Jesus more. I’m praying for comfort, strength, courage, peace, protection and complete healing for you and the Lord’s wisdom and the Lord’s love to be in the doctors and nurses and for healing and protection for everybody in this wonderful group. I pray you feel the love of God for you, and the love from members of this support group!
Thank u so much everyone. Im amazed and overwhelmed by the outpouring support and advice and prayers I have received from this group. It was definitely a wise decision for me to join this group.
Its is still unnerving having to just wait, but I’m not waiting in vain. I know that Gods got me.
I have been looking at things alot different since the wise words of advice from other members.
I have also sat and talked with my husband about my feelings and thoughts and he has come around a bit.
Thank you again to everyone for their prayers and kind thoughts and words. I will continue to post my progress on here and wish continued Blessings for all of you
Hi Nelly,
I just wanted to reach out and let you know I’ll be thinking of you between now and August when you have your coiling. I’ve had 2 coilings done on the same aneurysm. (Long story)
I’ve also have had that aneurysm clipped and another one clipped, that was found, almost 10 years later.
[I don’t have a complete Circle of Willis and that has caused all of these problems* in my Anterior Communicating Artery. (*aneurysms)]
I understand the surprise and “why me” and just know…your team of Doctors and Nurses are trained to take care of you. They do this every day. Your interventional radiologist who will do the coiling, has studied your case and knows exactly what he/she is going to do. Nothing is left to chance.
My aneurysm rupture happened a little over 18 years ago and I am still involved with the team that saved my life at the same hospital. I still have regular neuro-angiograms/arteriograms.
You will be in my thoughts and please let me/us know how you are after your successful procedure!!!
Take care and good luck!!
Mary
Awwww Kipkate bless ur heart. Thank u so much for the prayers and kind words. I have so much faith in “my team”. Just nerves and anxiety. Im ready ready for this.
Do u mind if I ask a few questions?
How long was ur surgery?
How long were u in the hospital after ur Coiling?
Any advice or suggestions on recovery at home? Do’s & Don’ts?
Hi Nelly. I had two aneurysm procedures. The first one on May 2017, a pipeline embolization with coiling. That was the hard one to recover from. I was noise sensitive for a couple months, and still have brain pressure. The second one on August 2017, this was a pipeline embolization, no coiling. It took me 3 months to recover from each one. I heard everyone is different. You have to listen your body. I don’t carry anything of 20 pounds or more. I am not able to do yoga nor Pilates. I start feeling brain pressure after high cardio or stressful situations. If I control those situations, I feel normal. Try new things one at the time, so you can identify what can cause you problems/discomfort. Be positive.
So, my 1st coiling really doesn’t count because I was 7-8 days into a rupture before I got help. I had the neuro-angiogram and then we went right to the coiling.
So, my 2nd coiling was more like what you might be facing.
Timeframe…from being taken to the OR and then to Recovery…a few hours.
After the coiling, I was in N-ICU for 2-3 days at the most. Then home for 2 weeks and back to work.
(My coilings were done a long time ago. Like 2001 and 2002!!)
And everything in the medical world keeps progressing. Like, my 2006 clipping was nothing like my 2017 clipping.
Medical technology has/keeps progressed/ing so much.
Just know that after, your body and brain will need time to recover. Sleep as much as you can. Take naps. Don’t push yourself beyond what you can realistically do. If you get tired…please stop what you’re doing and rest. It really will help you recover more quickly.
Please let me/us know how it goes in August and I will be thinking of you…
Uh, no. Coiling/stent is not totally always painless without side effects. I had horrendous headaches at first that slowly dissipated within 3-4 weeks. I had several other side effects also - my everyone I know had some.
Will someone be coming in with you for your surgery on August 8th? Everyone has different recoveries afterward - I did have a pretty severe headache after my coiling/stent and it took my neurosurgeon a day to get the right combination of meds to control it. It was completely gone, however, by 3-4 weeks, but I had to take meds for those weeks. I also had other side effects and my doctor could not figure out why but most of those also dissipated. Severe fatigue is also a common side effect. The wonderful thing is that they caught it before rupture. I was in the ICU for 2 days and asked to be released on the 3rd night. Most people are in ICU for 1 day after surgery and then released the following day. I know people who returned to work 2 - 4 weeks afterward - I could not. I don’t know anyone who had personality changes - I think this occurs only with severe brain damage usually from ruptures. August 8th is a long time to wait - most of us with unruptured also had wait times, but you are almost there. Sometimes partners have trouble talking about serious things because they don’t know what to say and it is hurtful. Or they are afraid to talk about it. If you know someone spiritual that knows both of you, it might help you to approach them about this. This is really above my pay grade!! It is important to have someone with you at your doctor appointments for awhile - it is so hard to comprehend everything the doctor says. I have been through 3 very serious health problems and support is crucial. If you need support while you are here, let me know. I am 1 1/2 hours away from Lahey.
Ohhhh Sherri. U are a gem! Thank u Thank u for ur words of advice. Yes my dad and stepmom will be flying up with me. Husband is staying with the kids. Yea I have been trying to talk to my husband about the whole thing and he admitted that he is scared and truthfully at 1st had never heard of it before (he’s Jamaican and I assume it’s not a common illness there). So we’ve been on the BAF website reading and watching videos.
He’s talked to his job and will have off 3 days a week for 1 month to be home with me. (My mom will be there the rest of the days)
I do plan on having him at all follow up Dr appts.
All the best to u with everything ur dealing with as well. I will keep u in thought and prayer.
I will try and keep everyone posted on my progress.
14 days to Surgery day:blush:
Hello everyone. Just an update.
My surgery went well. They were able to fix 1 of my aneurysms (which took them 5+ hrs) However while doing my surgery and en route to the 2nd Aneurysm to start that 1, they realized that my PTT levels were prolonged so they gave me Heprin (assuming it was the Blood thinners they had prescribed me to take before surgery) but it wasn’t that so they stopped the surgery immediately because had they had continued and tried to place the Flow Diverter it would’ve streched my vessel too much and I would’ve bled to death.
PRAISE GOD FOR MY SURGERY TEAM AND THEIR QUICK THINKING AND DECISION MAKING.
For now I’m at home in Bermuda recovering. I will be going back up to Boston in 6mnths for follow up and to take a look at the 2nd aneurysm to see how she looks and make any decisions. Slight headaches every now and then but lately been having aches and pain in my right leg (thigh - ankle)I’m scared its something wrong. Going Dr on Thursday.
Thank you all for the positive thoughts and prayers.
Hey Nelly,
Not so good to hear of the dramas with the 2nd annie BUT it’s being managed by the sounds of it and that’s a good thing. That feeling of “I’m scared its something wrong” is normal, very normal. For me, post neurosurgery, every ache, every twinge and I was thinking “What was that? Is this it?..” but over time we do learn the signs. It’s all part of learning our ‘New normal’. Things have changed and it can take some time for things to settle. Take the time you need. The medicos may say ‘2weeks’, they may say ‘6 weeks’. Recovery doesn’t have a set time, we all recover at our own rates some can be good at 2 weeks, some can still be battling at 2 months, even 2 years. Do not be giving your recovery a set time. It can be soul destroying when they say 2 weeks but even 2 months later we’re not better. Recovery takes as long as it takes.
You have a plan for follow up, that plan is to see the Dr. and that’s all you can do.
But it’s good to hear that you are home in your own environment. That’s where we are most at peace, at home. Healing needs that peace. Now it’s time for some healing.
I was grocery shopping within 1 week, because its not that invasive a procedure. Your leg will be sore for few weeks again. I stayed 2 nights in the hospital, but typically it is only overnight. No personality changes with me.
