Post surgery journey

General
1

Hi guys,

I wanted to share my journey with you all for two reasons 1)in case it reassures anyone 2) to hear your journeys and share any tips for recovery.

I found out by accident that I had a 10mm aneurysm off the main artery behind my right eye.

The first surgeon was old school and told me he would scan me in two years that it wasn’t a big issue and anyone could have an aneurysm.

I then get a call from a nurse saying that surgeon has retired and two other neuro-radiologists have taken over my case and want to see me ASAP. Two weeks later I had my angiogram, three weeks after that my surgery was scheduled. I had coils placed into my aneurysm.

Following my one year angiogram my surgeon decided they wanted to go in again. This was the fourth time I would have a procedure on my groin. He told me there and then he wanted to do another surgery which would mean a stent being added.

I had my surgery on the 5th Feb and it was very successful. They placed two stents this time instead of one. He said he was concerned the first one would move and wouldn’t be enough so he placed another one. He had some trouble with my groin and had to stitch it. I’ve been having some vision problems. Is this common?

Anyway, it’s been a long journey over the last few years of appointments, surgeries and angiograms. When he told me he thinks this will be the last surgery I will have I nearly cried. I’ve been so used to having appointments and talking about aneurysms it almost feels strange to not have any more reoccurrences.

I am so happy to get home, be well (apart from the vision) and so thankful that I had an amazing team who never gave up on me or make me feel I wasn’t important.

The interventional team at the Royal Vicoria Hospital in Belfast, Northern Ireland are incredible. I am very lucky.

Now starts te recovery which is the hard for me; physically and emotionally. How have people readjusted to life post aneurysm/surgery?

Thanks guys,

Sarah

2

Sarah, I ruptured a couple years back and the blood damaged my occipital lobe so I have some problems with peripheral eyesight. But lately I have noticed I have good days and better days.

One of the hardest things for me was being told repeatedly I could no longer work. Seemed I couldn’t wrap my brain around it. But then work let me go and it sunk in. Luckily I had worked long enough to receive a small but necessary disability check from the State Employees retirement fund. And now just waiting for the hearing for Social Security Disability here in the States.

I believe everyone has a job they can do. Although I won’t be working with children and families anymore, I developed “jobs” for myself around the house and at my parents. For me, it was difficult to learn and remember what I can do and what I can’t - like no bending, or cooking with supervision only. But for months in early recovery, I slept, a lot.

I like to garden as it has been a stress reliever for years. I am learning to put things higher and garden differently. Two years ago I grew sweet potatoes in straw bales, we were rewarded with 45 pounds or so in the five straw bales and I didn’t have to dig!

I help out here on the support group which fulfills my helper personality.

I have days that I do certain chores. It fills the time up.

I walk the dog, usually only in tolerable weather, neither one of us wants to be outside when it’s in the twenties or below. That’s F not C lol.

If I know the menu, I can do all the prep work so dinner doesn’t take as long for my partner.

I take my 83 year old mother to cardiac rehab three days a week. We had to move in to their home to help out when both parents were doing poorly. We got to move back home a couple months after my dad died and my mom was able to do things for herself.

I exercise at least thirty minutes a day.

I enjoy my hobbies.

Every Saturday, we meet with friends for breakfast. Sometimes it’s on Sunday’s. And once a month or two, we go out to dinner with friends.

I go to bed fairly early now - usually between 2100 and 2200 hours but get up usually around 0600 - 0630. I don’t take naps anymore.

So basically I do things that give my life meaning to me. I keep a positive attitude and I set goals to improve me. But the biggest change besides I talk a lot now, is I tell people I love, that I love them, everyday.

3

I’m so happy that they were able to fix the problem.Mine has been 5 yrs since Annie clips.Mine was behind right eye! Surgery went well.2 yrs later found out I have stage 4 lung cancer and now told another Annie behind right eye.Although we want our lives back the same I do not believe I’ll ever be the same.But I am thankful I’m still here today.I go back on the 1st of March to see my Dr for the Annie!! Eye sight and headaches are my common complaints.Wish you lots of luck on your recovery.Although it’s a lot to go threw without it we would not be here.Dont know if the Annie will continue to come back I am praying this one stays small and not another surgery is needed.God has my life in his hands.I can say my eyes have pain in them and headaches.But with it being behind my eye is understandable.

4

One of my biggest problems is that I am impatient. I’ve had a ruptured aneurysm and an unruptured one fixed in March, then a third one clipped this past November, followed by a stent in December. The blood in my brain caused one set of problems and the open brain surgeries caused another.

I have a vision problem from the original rupture, but that has improved over time. Moving quickly has been a problem that caused head pain, but again that’s better. Exercise is tough as I’m not supposed to strain, but I’ve just added some jogging to a 3 or so mile walk almost every day.

Doing something that requires thinking and paying attention can either be rewarding or exhausting. I get mentally tired at times and it shows up as a quivering voice. Other times working on things such as fixing something that isn’t working right makes me feel much better. I have no idea what the difference between the two is, but I do think that pushing myself both mentally and physically will help me get back to my old self sooner, and better.

Good luck to you, I hope recovery continues and improves for you.

5

I had a clipping behind my right eye. My vision was "off" for maybe as long as a year. I stopped wearing my glasses because they didn't seem to be effective any more; I didn't even try to read anything. After a year (could have gone sooner) I had an eye exam and got new glasses. Now my vision is fine. Another thing I noticed that's still true today (although much less so than early on) is that when I start to cry, as the tears are coming up, my right eye burns like mad. It passes quickly and I'm used to it. Some of these changes just take time to get used to but don't have any long-term consequence. Good luck!

6

send me your email I want to send you something another member of this group sent me I actually wrote you a long reply but it disappeared while I was posting it!!!! That's ok I'm not gpoing to get upset because I do things like this all the time. I've learned just move on

Peggie

7

I had an aneurysm behind my right eye as well; it ruptured almost five years ago. Recovery takes a long time, both physically and emotionally, but be patient; things will improve! I still have occasional vision problems - like my eyes are not quite focussing together - but usually it’s when I’ve pushed myself too hard. I still get achy legs because all the blood in the spinal column damaged some nerves. The lesson we are all learning, I believe, is to put our health and well-being first. This is hard, especially for us women, but it’s so important. Best wishes!

8

Hello Sarah,

My situation was quite different from yours. Yes, I had a brain aneurysm; and it required several surgeries to get it right. I did lose some peripheral vision in my left eye - due, I believe to brain damage from the bleeding inside my brain. I've heard a number of times that I am lucky to be alive - and I'll take that as a reassurance any day! The Aneurysm happened in October of 2010. Since then I have had knee replacement surgery and an aortic valve replacement. I am now retired but since the aneurysm I have been on disability. I have followed all the doctors' advice - annual check-ups with a neuro-surgeon and a CT Scan as well. No coil was ever put in place, however I did get a shunt installed, which is controlled or calibrated magnetically.

I have had lots of support from my wife and other family members so my recovery has been slow but steady. I still drive, but that is a challenge, to say the least! I have just learned to adjust to a new tempo of life and I have learned to accept help from friends and family. Life is good - and I feel so lucky to just be alive! I am now 66 and officially retired. Oh, my aneurysm has caused me to have ceisures. I now take a medication called Kepra to prevent them. I will have to take this medication "for the rest of...life".

Thanks for sharing your information. I hope it helps you!

-Mark

9

Hi Sarah. It was good to read your post and hear that you are now over your procedures.

I had 2 of these things coiled and stented over the last 2 years with no problems at all, I still have 3 more untreated that cannot be sorted by coiling etc, but needs open surgery, I am not going there!

Mines were Basilar and Opthalmic like yours, but as I say all went well, in both instances.

Now that yours is sorted, it is time for you to get back on your bike, so to speak and forget about the past, they will probably arrange to scan you once a year as a precaution, fear not as that is normal.

Now is the time for you to join a gym and get an exercise routine in place, keep busy and try to forget about what was in the past, the problem is now sorted so chill and get on with your life.

I do all of the above and it works for me!

To re-assure you have a look at the study I attach on un-ruptured aneurysms, open the sub sections for more info, this will re-assure you of the small risks associated with these things

Keep us posted on your well being.

Kind regards

Martinc

24-nejm199812103392401.pdf (183 KB)
10

Hello So glad you had the coiling. I have had two craniotomies (coiling was not an option). One when I was 32 and one last May at 52. This time I had the surgery on two aneursyms they had been watching that had gotten bigger. During the surgery they discovered that the mickey mouse ear aneursyms had been wrapped around my ocular nerve. The trauma of the surgery was great on my face, eye and hair and skull, and physical body; however 8 months out and I am doing well. My eye is completely healed my hair around my scar is about 2 inches and my skin is back to normal. Still have surgical pain where the plate was put in but that should go away. The biggest thing that has helped me is exercising twice a day and eating clean organic meals with supplements. I still have cognitive problems with reading comprehension but I am finally 1/2 through a book. You will do great with the coiling!

Dsouth

11

Hi Bloomsie, I wrote about most of my after-effects just now in my reply to Gerry, but there are a few I forgot to mention. I get very easily disoriented and therefore I am not allowed to drive, which is a pain, as I'm used to whizzing around and having my independence. I don't feel confident enough to take the bus alone, and I wouldn't be able to figure out where to get off. Also, socialising can be difficult because the to-and-fro of conversation 'does my head in'. I feel quite washed out afterwards. Plus, if I walk fast, I soon start to get very dizzy and have to hold on to something so I don't fall over (which used to happen a lot). Overall though, I'd say I'm still gradually improving, after five years - my husband says so too - he says it's been like living with somebody with Alzheimers, only in reverse, because I'm gradually getting better, my memory is better and I can navigate better too.

12

Well in 2010 I was rummage saleing driving all over town I had heart burn n sick to my stomach n my vision was blurry from the sun that morning so I told my wife I wanted to go to ER she said ok so I drove to hospital when we got there we waited 2 hours when the doc finally came out to see me I stood up n fell on the doc he thought I was having a heart attack then they figured out I had a ruptured aneurism I was medi flight to Westlyen medical in witchata Kansas they had to open my head n clip it . I was paralyzed on left side n had blood spurts in my eyes I wasn’t sop pose to survive but I did I had to learn how to walk eat n talk all over again they said I had another one on opposite side of my head .i had a 8% chance that it would rupture too if I didn’t fix it within 2 years I flew through my therapy I was walking talking eating everyone was so surprised how fast I recovered my eyes had surgery I have 20/20 vision now when I came home from hospital I had a seizure went back I had coiling surgery on the other aneurism I’m doing great I’m just waiting for Doctor to release me to go back to work it’s been hard just living on disability other than that I eat right exercise take my meds I lost a lot of weight I feel like a new man now I just thank god every day I do volunteer work helping people n take care of my church landscaping mowing n watering flowers I’m a changed man now the aneurism was a wake up call just fight through it n pray n everything will fall in place

13

Love and healing to all heroes makes and female

14

I had a 7 mm unruptured aneurysm discovered on my left ophthalmic artery. I had had headaches and a stange visual disturbance with scotoma which made me seek medical attention. I then had MRI.--- I had endovascular procedure with stent assisted coil embolization of my aneurysm. This was 5 years ago.

I had fallow up angiogram at 6 months and 12 months. I was put on ASA and Plavix. Plavix was supposed to be only for short term, but when my interventional neurologist tried to stop it, I had a TIA, and the sh second time it was stopped I had a small stroke. (it was a very small stroke) I have no remaining ill effects from the stroke. Now I have to be on it for life.

I have had some chronic headache. This has been described as Icepick headache, and often at the same place, on left side of head. My 2 neurologists have been notified. I also have severe peripheral neuropathy, so my neurologist has started me on Amitriptyline, that is to help with neuropathy pain and also for headache.

Just now recently, 2 months ago, I started to have intense sharp headache, and a pulsetile tinnitus which made me worried regarding my aneurysm. --- My interventional neurologist did a cerebral angiogram , and he found that the aneurysm that had been coiled, now has a small area that is refilling. He said it is too small to be repaired at this time, only 1 mm. I was told he would repair this in 3 years.

It makes me feel very uneasy to know that the aneurysm is refilling, and I just wait.

I would like to know what literature there is in this regard. I know that coiling of aneurysms is fairly new within the last couple of decades, so that the documentations of long term fallow up is perhaps lacking so far.

15

please give the surgeon a call, you should not be having vision problems from a coiled or stented non-ruptured imo. What issues are you having? prayers for you tc

16

Hi Peggie, it's boxmaterial@hotmail.com. Thanks :)

Peggie said:

send me your email I want to send you something another member of this group sent me I actually wrote you a long reply but it disappeared while I was posting it!!!! That's ok I'm not gpoing to get upset because I do things like this all the time. I've learned just move on

Peggie

17

Hi Ronk,

Hope you're well :). I told them about my vision problems but they seemed to be confident that it would go away in a week or so and if it doesn't give them a call.

I have had some nerve damage in my foot and sensations down the right side of my face (where they operated). I am trying to not pay too much attention to it and be a worry wart over over every tingle and sensation.


ronk said:

please give the surgeon a call, you should not be having vision problems from a coiled or stented non-ruptured imo. What issues are you having? prayers for you tc

18

Thanks guys for all your stories, advice and tips.

Despite the multiple surgeries I am very positive and feel very lucky. The surgeon said to me I have had major surgery twice plus two angiograms and a whole lot of metal added in my head. He's not been dismissive at all, very supportive. I couldn't ask more from them. They never gave up on my case and made sure they got this aneurysm.

With two stents and a whole load of coils I'm hopeful this will be the last surgery. I hope that the vision problems (orange shooting lights) and pain in the groin (they had to stitch it and had some bother with it) will go away.

It's great hearing your stories so thanks for sharing.

19

Hi bloomsie,
I have had a clipping and and an angiogram in the past 5 months. The angiogram pain took approx. 2 months to recover from as far as site pain. It seemed a long time.
It seems there is not too much " normality " in this healing process - I’ve had two post surgery alarming trips to the ER with no specific out come. It is so easy to worry with sensations you have never felt before - I keep hearing that I need to give it a year!
I also have had vision problems but not shooting orange lights. I went to an opthamologist who can see all the workings behind the eye. Convergence can be an issue and they say it should settle down - hope it does for you!
Susan

20


naaa you not worry wart!! we must be our own advocates and look out for ourselves, hope its improving! tc
Bloomsie said:

Hi Ronk,

Hope you're well :). I told them about my vision problems but they seemed to be confident that it would go away in a week or so and if it doesn't give them a call.

I have had some nerve damage in my foot and sensations down the right side of my face (where they operated). I am trying to not pay too much attention to it and be a worry wart over over every tingle and sensation.


ronk said:

please give the surgeon a call, you should not be having vision problems from a coiled or stented non-ruptured imo. What issues are you having? prayers for you tc