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boozysuzi100

Anti- seizure medication-???-UK

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As I have posted previously I am having my 2 annies clipped at the end of the month.

One of my biggest fears is developing epilepsy due to.the massive impact it would have on.my life,  not being able to drive,  ferry the kids about etc plus I am a community nurse so rely on my car for my job.

 

I did ask the surgeon but he said anti- seizure medication would not be prescribed and the risk especially with unruptured aneurysms is relatively low.

 

I have noticed that on the American forums people seem to be routinely prescribed anti seizure meds following a clipping surgery. I just wondered why the practice is so different here - I'm sure I would feel safer with them. 

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Hi Boozy Suzi,

If you do not need them, why take them ?  I have had Epilepsy since puberty and Epilepsy started then at 14,  but oldun now.

 

I went ages without them and was thinking hmm I reckon they are leaving me.  Then Docs messed around with pills and I had 1 after 6/7 years of being seizure free.  Calls Epilepsy a few choice names lol xx 

 

So try not to worry just yet over Epilepsy as the more you stress etc !!!   Get op over and done with and then take it from there.

Be Well (and easy for me to type) No Stress and just take one step at a time.

Love

Win xxxx

 

 

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Hi Suzi,

 

I was on anti seizure meds for some months after my SAH and I can only speak from my own experience.

 

I can only say that the side effects for me, were terrible and I was glad when I could withdraw from them and that process took quite some months and I felt pretty rough to say the least, as the withdrawal was worse than taking them and it was probably the toughest time in my life.

 

I couldn't have carried out any work when I was on them or when I was withdrawing from them....so I'm a little bit biased and can't understand why you would feel safer on them?

 

I would imagine that the American health system is a totally different ball game ... private health care and perhaps it's a monetary thing, but knowing what I know, I wouldn't touch the anti seizure meds with a barge pole .... if I didn't need to. I reckon that I lost 10 months of my life to them... 

 

I'm not sure why you would be worried about developing Epilepsy post surgery, as from what I can see, you haven't had a bleed?... I had seizures before and after coiling, but I never went on to develop epilepsy. That's not to say that it won't ever happen because of the bleed, but so far it hasn't and I believe that the percentages are pretty low.

 

Wishing you the best of luck with your clipping. x

 

 

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I am a nurse and am aware of the side effects of anti- convulsants.  I agree with you Karen as I took.them for a short period when I was diagnosed with neuromytonia to lessen the fasciculations ( twitches) that I get in all my muscles but decided I would rather manage without due to the side effects which can be quite toxic.

 

The surgeon told me there is an overall risk of stroke/ seizure with the clipping procedure but he considered the risk small.

 

I asked out of curiosity more than anything as it seems standard in the USA that following craniotomy they are prescribed them for a month after surgery as a precautionary measure.

 

Thank you both for your kind words and reassurance <3 

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Hi Boozysuzi

 

I've just read your post and understand your concerns having worked in the nhs for a long time I think it depends on the surgeon as to which way and how  he treats his patients. The effects are sometimes devastating for those who take anticonvulsants. Once the dose is right, then there are no complications, but its getting the dose right in the first place that is the problem.

 

Some use the drug as a precaution for certain surgeries. Take his word and trust him. Good luck for the 31st.  

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I had an unruptured anni clipped 6 years ago. The clipping went well but unusually I suffered vasospasms after the op (I'm told this usually only happens when there's been a bleed) and was on gelofusin (sp?) For about 10 days post op. I was in HDU for about a week during that time. I don't think I was given anti consultant drugs but the name namipodene rings a bell.

 

I was discharged with no additional media and was told the risk of seizures is greatest during the first 3 months. By the time of my review I was well enough to be discharged without further treatment.

Just really saying this because I've been there and I was scared of brain issues too but you have to put your faith in the experts, if you need the drugs they'll be prescribed, if not then try not to worry x

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It's funny really, most people remark on the horrors of a craniotomy, fears of not walking up etc. Although I don't relish it,  I know I'll wake up but it's the risks of complications that worries me. I also worry that as one is quite distal and complex,  I'll wake up and he'll tell me he couldn't get to it.

to be honest I think being a nurse sometimes hinders rather than helps. You question everything and research which makes things worse.

 

On a positive note he has told me that clipping gives me the best chance of drawing a line under it and being given the opportunity to get on with life.

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Suzi I chose to be clipped, was offered the choice of coiling (with yearly angiograms) or clipping because it was a line drawn under the treatment I chose clipping. It was my first surgery of any kind and I was terrified but I was more scared of repeating the angio (they struggled to stop the entry site bleeding) on a yearly basis.

 

The lady in the next bed to was coiled after rupture, her recovery was nowhere near as good as mine. I didn't rupture but had complications with vasospasms and the pressure of the anni on my brain for 6 weeks  so there are people who have recovered better than me. There's just no way of second guessing what the outcome will be.

 

Ill be crossing everything for you (if others anything I can help with just pm me) x

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Thankyou- I can identify with what you are saying bagpuss. As I have no choice but to have one of them clipped the decision was easier for me.  People often remark that clipping is more invasive and has a higher risk but my rationale is that the need for follow up is more or less negated. I too hated the angiogram but for me the worst bit was the dye which caused me terrible pain at the base of my skull and a sensation if losing consciousness.

 

If you consider the inherent risk of the angiograms and the possible need for repeat treatments with coiling,  I feel there is not much between the two as regard overall risk. Also if anything does go wrong access to the brain is direct. Saying that would prob have been tempted if coiling for the two was an option.

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Just wanted to chime in briefly.  I had two Annie's clipped in 2008, in the US.  My neurosurgeon did not prescribe anti seizure meds and did not discuss it as a possible outcome. As for us having privatized medicine,  I can tell you the health insurance companies are definitely not in favor of paying for treatments or meds that are not necessary.

 

Sometimes even when things are necessary they balk at paying.  However,  I've never heard that anti seizure meds are prescribed as a matter of course.

 

Colleen

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Just let us know how you get on and we will be here for you when you come back from op and all is well.

 

So don't forget to tell us how it went and speak/type soon xx

 

Love

Win xxxx

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Hi everyone,  I'm alive and fairly well after my clipping 9 days ago.  My aneurysms were both successfully clipped and apart from.a vasospasm surgery went well. As I was having open surgery, the surgeon said he was able to deal with it effectively and quickly. He remarked he was glad to remove them as my 7mm MCA and 5mm ACA had both grown to over 10mm since August.

 

The first three days were a breeze until my day of discharge when I had the most horrendous vomiting. Iv fluids then home on day 6. 3 days on, the headaches have subsided and just a little light headedness remains.  my sleep pattern is normal for me and I don't  seem too fatigued.

 

My most troubling symptom is muscle spasms in my lower back near my tailbone which are particularly bad when I stand up.I am wondering if this is due to prolonged periods in bed whilst in.hospital where I slept in an elevated position. 

 

I am grateful to be alive,  God is good and i would love to thank you all for your kind words and reassurance prior to.my surgery when I was afraid.  I am hoping I can now be in a position to reassure others.

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Suzi, Yes you Boozy lol xx

 

Glad all went reasonably well apart from being sick and headaches. Phew !! Bet it is a relief for you xx

 

Hope tailbone gets better, try a Coccyx cushion it has a hole by base of spine I awoke with a pain there and it is so uncomfortable, I still sit with my cushion (as I call it my hole cushion) lol. But you have spasms !! so might not need one.  Well it wont hurt to relieve pressure I guess.

 

I was in bed for an age plus the spinal injections/lumber puncture.  Phew glad I cannot remember any of that!!

Good luck on recovery and ask Tina as she had clipping done xx

Love

Win xx (she who cannot sleep) lol ..Keep Well and Bright xx

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The backache is probably due to long periods in bed hope you have a speedy recovery xxx

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Hey hun

 

So glad all went well and that we were here to reassure you before - we'll definitely be here to support you after too.  Take it easy and rest up - the Coccyx cushion is a great idea!

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Hi Suzi :) 

 

So glad all went well and you are now home. Make sure you rest up and drink plenty of water.

 

I had a ruptured anni brain stem that was clipped. I was in hospital for over a month.

When i came home i had really bad pains at the back of my head & neck. The pains then started to move down my spine. I was told it was the blood dispersing down the spinal cord. For me it lasted quite a few months and was very uncomfortable, but it did inprove over time.

 

As Win & Sami have suggested try the Coxxyx cushion,  it may help you with the discomfort. You can get them from Argos or Amazon etc for around £10.

 

Take care and let us know how you are getting on.

 

Tina xx

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Hi - a quick update.

 

I'm doing fab. Back pain has gone and on reflection think the upright sleeping position caused it.

I am completely pain free and have been off all my pain relief for 9 days now and can even sleep on my craniotomy side. I feel like I'm buzzing and much to my partners wrath have decorated a bedroom this past week. I feel quite energised and relieved to the point where I asked my gp if I could return to work next week but he said no to my return 3 weeks post op and told me to think about it after Xmas. So I will!

 

I really don't believe unruptured aneurysms don't cause symptoms - I have absolutely no headaches at all. It was uncharacteristic headaches which lead to me seeing my doctor in the first place. A week prior to my surgery I had started getting awful squeezing pains in the base of my skull ( my aneurysms were at the front of my head) which have now completely disappeared.

 

My surgeon told me he was pleased to clip them as they had grown from 5mm and 7mm to 8mm and 11mm respectively since August. I also had a severe Vasospasm which fortunately left me with no defecits as he said he dealt with them effectively and rapidly. I thought they only occurred after a rupture ( maybe I bled during surgery?) I will ask him at my follow up appointment as I wondered if I was having mild ones the week before my surgery and that was what was causing the squeezing pains- or maybe my annies were pressing on something.

 

I feel blessed and grateful for my life and my uneventful recovery. My biggest Hurdle has been looking after my 76 year old mum ( who came to look after me) .I booked her an appointment at the local hairdressers to treat her, only for her to come back 2 hours later with a huge black eye ( to match mine) after slipping on some cobbles. what a few strange looks we have had with identical matching black eyes- lol- bless her.

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Hi Suzi :)

 

Thank you for your update. So very pleased you are doing so well with your recovery.

Its a very good thing you did get your uncharacteristic headaches checked out !

I am sure it was your body telling you something was wrong.

 

Have a wonderful Christmas and please dont rush back to work, just take your time.

Sorry to hear about your poor Mum, bless her.

Wishing you both well. 

 

Take care

Tina xx 

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Hi Suzi

 

All what Tina has put ditto xx

 

Perhaps the stress wasn't helping but good job the nasty things are out. 

 

Now come and do some wallpapering for me as me and Hubs are so useless lol. Apart from when I was ill xx

 

Take your time and be happy, well done you xxxx

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Thank you all - recovery continues but have had to stem the tide of visitors whilst I'm off work.  people have been dropping in regularly. I'm usually very sociable but recently have found it overwhelming and intrusive. It's weird,  we have had a loft conversion and have had deliveries of furniture. I can only have one delivery a day, any more and I feel anxious and overwhelmed.

 

 I feel I need to be on my own for a while to recharge - I suppose this is the neuro fatigue hitting.me - I feel mentally worn out and just want to be on my own during the day with my dog until the family get home. One of my friends told me not to become reclusive and I think I've offended her by telling her not to come so often. This makes me realise I'm not ready to return to work. 

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Suzi,

 

Thank your lucky stars as by the time I have got dog off my lap,  heaved myself up lol (Excess Baggage) Waddled to door all that is there is a note saying we called and no one was home  lol ..I shout "give me time Hold on I'm coming" at the top of my voice.  All to no avail !!

 

I wasn't very friendly after I had my SAH but my brother got me out of bed and I sat with him on settee and he sang to me and I joined in.

It made me feel back in the real world again xx

 

Good luck xxx

Win xxxx

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Hi Suzie!

 

I follow your posts since October when I have been diagnosed as we have something similar. You did experience headaches and  were worried that time .I am very happy for you that you step forward and on the way to recovery.

 

I am doing my nursing course still go to uni and struggle with my headache and fatigue. Sometimes think why  am doing this, It doesn't make sense because I will go through brain surgery. I am so devastated as I have little kids. I would like to know how are coping with your daily activities.

Thank you very much for listening.

 

MAYA

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Maya, I am coping much better than expected. My son is 12 so probably not as demanding as little kids. I too am a nurse and as I work nights,  I have struggled with sleep. many people say they sleep for hours after surgery but I haven't. I do struggle to get to sleep until the early hours and then feel tired when I get up around 9.I wish I could nap during the day but don't.

 

My partner is doing the school runs so that burden is off me. Even if my surgeon gives me the ok to drive next week I'll not do that till after Christmas.  I manage all the usual household chores and am back to taking the dog out etc. I do feel bushed at night though. With your kids being young I would advise you to enlist the help of family if you can. As I have the house to myself during the day there are not many demands placed on me in respect of childcare.

 

I have also had to de-stimulate my. life a little and am trying to leave a few blank spaces in my diary - when is your surgery? Keep us updated. 

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Hi Suzie. Thank you so much for taking the time to reply.

 

I have my Richard.  I am having tests with dye tomorrow and after they will decide about surgery. Mine is left para ophtalmic aneurysm. I was reading in the posts, some people experience  poor eyesight  after surgery. I am  so worried for tomorrow.

 

I had my scan and I have a very bad cough. I have had antibiotics  and the doctor said we can't  give any more as they think it's  a virus.  I am worried about my test in case I start coughing. I will let you know how everything goes. Thank you very much and wish you a speedy recovery. 

Maya.

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