Recovery after coiling

[Deeday67]

After finding out about my 6mm Aneursym in January this year whilst getting ready to have an operation to remove a Pleomorphic Adenoma (benign tumour) growing around my left tear gland, I have now had my angeogramme etc and at apointment last week, a treatment plan has been decided. Due to the location, clipping is not an option as it is on the main internal carotid artery, and there is also a danger it will impact on my sight. The Aneuryms has now grown and is just over 7 mm, so Neuro have suggested that I have coils fitted in 4 weeks time. This will allow me to go ahead and have the Adenoma and tear gland removed (which is growing rapidly now causing a few problems with my sight) and in 6-12 months, I will go back for a flow diverter stent (they cant do it at same time as coils due to the blood thiners, and then wont be able to have the eye op).

My main question is around recovery time, and although I know everyone is different, but on average, how long will I be off work for the coils? Dr Google (sorry, know I shouldnt look on google) suggests around 2 weeks but reading on here and other sensible sites, suggest it may well be longer than this?

Have to say, I am terrified of having this done, but more terrified of not having it done due to our family history of SAH. Didnt help when Neuro explained there was a 10% chance of stroke, rupture or possible impact on my vision, but my wonderful husband did say that I have a 90% chance of coming through this unscaved, which is a much nicer way to look at it.

[tillymint16]

Hi Dee

I had a coiling of a 6mm anerysm last week and I would not know I had anything done!! Though 2 things: I had an issue with the puncture site in my groin.... I won’t go into details but I move too quickly the next day and my groin swelled up a bit.. the nurses ( who are completely wonderful) by the way sorted it out. I have what is called a pseudo anerysm in my groin and lots of bruising which I think is harmless but they are checking it with an ultrasound in a few weeks.

The other thing is the fatigue which I’ve found quite something actually and this is where you have to listen to your own body but it’s gets better everyday. I would certainly allow 2-3 weeks off work for that alone.

I’ve not had one single pain or headache and no pain killers. I too couldn’t have the coils stented as I’d a resistance to the blood thinner so just keeping fingers crossed at the MRI in 2 weeks all is well.

Finally I can honestly say my fear of it all and the blood tests were the worst thing as I’m completely terrified of them but the actual whole thing was no where as bad as I’d imagined.

The Neuro surgeon, his team and the Neuro nurses where completely brilliant. Remember it’s another day at the office for them!!!

Where are you getting it done Dee.

Regards Andrea x

[Deeday67 in reply to tillymint16]

Thanks Andrea, I am going into Salford Royal and have to say just how brilliant the staff have been, carefully explaining everything they are planning to do, and giving me time to let the information sink in. I was ok after the Angiogramme, just a bit tender in the leg for a day or so, but no other issues. I think I just want to get my old life back and perhaps trying to speed up my recovery, even before I have had the Op done, and keep thinking that i am not actually having a major op as its only an cathater in my leg (deep down I know that is not the case)

Again, thank you so much for replying and do hope that your groin is on the mend so very soon. Please do take it easy with your recovery and let me know how you are getting along. Big hugs and lots of best wishes on their way.

Diane xx

[Mikey48 in reply to tillymint16]

Your experience is very similar to mine after my SAH in 2015. I feel very fortunate as I'm sure do you.

[malalatete]

It really is a very individual thing and difficult to call as a result. I just had the flow diverter stent as my annie was too wide based for coils. The surgery took 5 hours instead of the 3 my husband was expecting. I had to stay in hospital for 5 days afterwards as I had severe migraine and they needed to be sure it wasn't a neuro issue (I can't tolerate Oromorph so the post-op pain relief was an issue). I went home with codeine and it took another week in bed before the headache subsided enough for me to get up and begin moving.

BUT I am a lifelong migraineur with a history of cluster migraines that leave me bedridden for up to 10 days at a time, so this reaction to the procedure was, for me, relatively normal and almost expected tbh...I can and have had similar although usually less severe reactions to the angiograms. Got one this week and my diary is pretty full for Thurs and Fri so there may be cancellations left right and centre. But I don't know - last time I was in and out and no issues...

Plan for a big rest. It is brain surgery, after all. I had allowed myself a month and in the end that was about right. If you feel better sooner then you have the time to build up stamina before you have to go full-pelt again. It is a big op, in terms of it being an op that affects your main control centre - and as you have more ahead of you I would make sure you take this one very slow and steady.

Hope all goes well.

[Deeday67 in reply to malalatete]

Hi Malalatete, thank you so much for the reply and taking the time to provide so much detail. I really do feel for you with the migraines, and admire how you always seem so positive in all your replies on here, even with the pain you must be going through.

I think planning for a 4 week rest sounds a more positive experience than saying I am going to be off work ill for up to four weeks. It may be exactly the same thing but I really do need to try and turn this into something positive rather than me feeling sorry for myself and actually missing work (well, missing my colleagues).

I had a long chat with my boss today and he is adament that I cannot go back till I am fully ready and he did say he wants to come and see me to prove i am not just saying I am ready to come back, so at least i am getting the support. He is making arrangements for me to come back on part days and/or work from home a couple of days per week to ease me back in. All this and I still have not had the Op

Again, thanks so much for the reply x

[GrannyTWest]

It took me about 5 mths to recover after SAH and emergency coiling, it knocked me for 6 but I have now fully recovered. Don't forget you are having preventative surgery, not emergency for SAH no you will probably recover much quicker. Yes, the medics definitely, definitely give you the worst case, I guess they have to. Anyway, good luck with it all. Hope this helps.

[Leila56]

Recovery is different for everyone. Mine ruptured but I didn’t experience an induce coma for two weeks like the doctor projected. I have been home recovering for 7 months and still unable to work. However, chose to live and do what it takes to stay alive and have a healthy quality of life.

[Deeday67]

Just a quick update, arrived at Salford at 7am today, ready for my Op. Following all the basic checks, blood, bp, etc, was given the disapointing news that I had not responded as well as anticipated to the blood thinners, needed for the Stent, so now back home. I am going in again in 2 weeks for the coiling and flow diverter stent but will be taking different blood thinners and hopefully these will work. Feeling a little deflated but cant praise the doctors enough, they are just totally brilliant x

[Deeday67]

Coils and flow diverter stent safely fitted, few issues with bleeding from my groin which was oozing for a couple of days (ultra sound scan showed nothing to worry about) but also a damaged tooth from during the op but again, nothing serious and the brilliant staff got it all under control. Had some swelling in the brain but steroids sorting that all out and although I do have constant headache and totally shattered, I can't believe how well I am after such short time. All thanks to the amazing staff at Salford Royal hospital. So now down to some serious rest and recuperation,

[Deeday67]

Quick update, three weeks on from the surgery and now feeling so much better. Had some issues with coming off the steriods which resulted in me being taken back to hospital and these had to be restarted and a more gradual tapering of the doseage. Now been off these for 4 days and starting to feel myself again. Headache bearable and undercontrol just with paracetalmol, balance now much better and starting to get some sleep, which is really helping. As I said in my last post, cant believe just how well I feel after the surgery and put this all down to the amazing surgeons and staff at Salford Royal Hospital.

Anyone who is going through this at the moment and waiting for their surgery, I can only say this is the best decision I have ever made by deciding to have the coiling and flow diverting stent fitted. I was convinced I was going to die (my mum was 17 when I was born, I was 17 when she died and I am now 17 years older than when she died - coincidence I know but the feeling would not go away). I wake up each morning and feel like I have my life back, not frightented if today is the day the aneurysm will burst. I am one of the lucky ones and mine didnt rupture, but each and every morning, I am thankful to the staff at Salford Royal, the Opticial who found the Eye tumour (which resulted in the aneursym being found) and I think of all the people who did have a rupture and my heart goes out to them all. Thanks to everyone on here for their support this last 7 months and I wish you all happiness and good health for the future.

[Tracy331 in reply to Deeday67]

I'm so happy you're feeling better read all you're posts so far I'm going into hospital soon there having to do full op it's all I think about but you've given me a bit of peace of mind thank you

[Andersl]

The problem with setting yourself a 'general' time to recover (from google) or going by other people s experience (individual to them) is that you may feel frustrated (in the least) or depressed (at most ) if your aneurysm and body with its own set of unique factors dont match up to what you read/are told.

Your body will need the time it takes to recover. How long that time is (hard to accept I know) is unknown.

The best advice I can give is (before and after the op) do things to reduce your anxiety level and get plenty of sleep.

We're all with you and wishing for the best possible outcome.

Ps: I have 6mm aneurysm on optic nerve. I'm done with worrying (for now ). Though I'm sure if it grows that may change. After all were only human

Let us know how you get on