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1st follow-up appointment


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Hi all

I had my first follow-up appointment at my operating hospital on Wednesday 10th Feb, and it was emotional to say the least.

I was getting in a state just trying to get dressed and ready in the morning. I had trouble doing my hair (I had my SAH whilst doing my hair for a works do...so have trouble quite often when I do my hair now), then I just kept crying...

The journey to the hospital wasn't too bad. It was as busy as I thought it would be going into London. It took about an hour and we got parked easy enough outside the hospital too.

Walking into the hospital didn't feel strange (as I was taken in there on a bed by ambulance and was taken back to my local hospital in a wheelchair by ambulance van).

We then had to go to the 1st floor to the Outpatients department, and I recalled being on the 1st floor when I was taken down to the Vascular Unit for my op.

I checked in and we went to get a drink in the cafe. I couldn't stop getting tearful. I think, because I had been planning for so many weeks now, and had made so many notes re. Post-op feelings, pains, numbness etc, and written lists of questions to ask; that my anxiety was spilling out in tears.

My mum and I went through to the waiting area and I was called in on time.

I asked my questions and the Dr answered as best she could, phoning someone else in Neurology at one point to check a question.

She said I look really well, and am doing really well. I have been really lucky and the op was a success, and I am able-bodied. She couldn't believe how thorough I was; going through all my notes and questions, and making notes and ticking off questions as I asked them! (Well, I just wouldn't remember it all). :-D

I mentioned that I am due back to work on Monday next week (15th Feb) - and she said that is not a problem, you are fine... There is no reason you cannot live life normally now. (It is 8 weeks today since my op)

The aneurysm was 100% occluded (packed in with coils) and I am ok now... :shocked: Neurologically I might be ok, but psychologically I think I need a little more time...

She said my headaches and neck pain are NOT related to the aneurysm...??? - does this sound right??? :confused: Apparently it may all be anxiety related…

I am going to have an MRi scan; as I mentioned a few tingling and numbness episodes I have had; and she felt it best to get me checked and put my mind at rest (I think she could tell from my bloodshot eyes and pale blotchy face that I was in need of reassurance!). And I have had some heavy feeling in my right thigh too (when I was on my period more so, and that is the leg the catheter was inserted into for the angiogram - although I have not had any pain or tenderness from the puncture site; and I have literally no scar there either).

I have been getting calf pain and a heavy feeling in my left leg, so I need to see my GP to check for (worst case) blood clot.

I visited my GP yesterday 11th Feb, and he has signed me off work for another 2 wks, as I explained I do not feel ready for work just yet. I need time to prepare myself mentally for that now. I have only just had a lot of anxiety lifted so would like time to actually rest properly now, and get myself together for returning to work!! :crazy:

I also went to another local hospital this afternoon to have a blood test that can rule out a blood clot without having [another] scan!

I am feeling a lot better now that I have had some questions answered, even though not all answers sounded right to me.

Kel x

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Hi Kel

You must be exhausted after all that but well done you, you coped very well. I remember going to my follow up apointment and the doctors face when I pulled out an A4 sheet of paper full of questions! But she listened to you and that's important.

I was told a minmum of 12 weeks off work. So 8 weeks is a bit soon. It's a huge leap going back to work and your right to have some time just for you. You're doing fantastic Kel it took me 9 1/2 months to get back to work.

She could be right about the neck pain and some headaches. My aneurysm was on my left vertebral artery and I get a lot of neckpain and stiffness in my neck, sometimes I still can't move my head to the left because it's seized up. I was referred to a physio and what a difference. She explained that I had muscles in my neck that needed to be "switched off" and other muscles that needed to be "switched on". At one point she massaged the muscles in my neck at the left and I nearly shot through the roof with the pain! But I can move my head much easier and I am having very few headaches. She also told me that stress and anxiety were causing me pain and stiffness. But your feeling better having had some questions answered and that's the important bit.

Take care

Liz xx

Edited by Liz D
spelling!!
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Hi Kel :) Really glad you have been signed off for a bit longer.....sounds amazing how well you have done, but yes, the emotional side is something that does not always come out until a bit later. So much to deal with.

I was like you...always went with a list of questions to ask ...is the best way :)

I was told my headaches and neck pain was because of the blood that had not dispersed after my bleed and from my craniotomy. I am sure anxiety makes it worse...but it did get better, but even now i still get the head and neck ache, also nerve pain in my face.

You have had a very emotional few days to deal with....please try to rest up. Reading your post bought back how i felt...very anxious and lots of questions flying around ...hope you got most of your answers and hope that the MRI helps to reassure you further :)

Please dont rush, take your time....take care.

Love Tina xx

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Hi Kel

I agree with Tina don't rush back into work before you feel ready. I hope that when you get the scan it puts your mind at rest. Anxiety does make everything seem worse but it does get easier to manage with time. The first year is definitely the hardest learning to accept the person you have become and the limitations the SAH has left you with.

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Hi Kel,

Returning to work at 8 weeks post SAH is very early ... a few people do return that early, but normally it seems to be 12 weeks or 3 months at the earliest...for many, it can be six months. It's an individual thing and only you know how you're feeling and what you're capable of.

I must admit that I didn't like going back to the hospital on my first follow up appointment .... It kind of brought back bad memories and made me feel anxious.

I was told by the Consultant that the blood can take up to 3 months to fully disappear down the spinal column and this process can irritate nerve endings ... I also had neck pain and stiffness for quite some months and was also told that I would probably be more prone to suffer from headaches than before the SAH.

Kel, do what's good for you and if you don't feel ready to return to work, then listen to your gut instinct, rather than feeling stressed about the situation, which won't help your recovery.

Wishing you all the very best. xx

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Hi Kel,I think all the emotion is the most natural thing in the world infact i've mentioned before that Merrill showed no interest in this illness what so ever,just takes it all in her stride and that i found hard to understand she also had leg pains like you, so bad that she could'nt even handle the quilt over them at night, this came a few weeks after the sah but did get better as time went on , Merrill will be a year on march 27th and she still has mobility problems, speech,memory hearing and eyes,she had a cranoitomy and a coiling then a shunt fitted a month later, but she still has new problems come along from time to time, so eight weeks is still very early and if you suffer anxiety that can be an illness on it's own, anyway Kel good luck with your recovery Rod

Edited by rod123
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Rod has just given me a reminder .... re: leg pain .... I had horrendous leg and back pain after the SAH and a lot worse than the head, as it affected the whole body ... I was given liquid morphine for it, when I was in hospital.

I was told that it was the blood draining down the spinal cord and irritating the nerve endings and irritating other parts of my body ... but would never want to go through that pain again .... would rather give birth!!

However, it's something that you need to get checked out and as I said in my earlier post, if you're not ready to go back to work, then let your GP know and take your recovery at your own pace. xx

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Hi Kelley,

I certainly wouldn't be considering going back to work yet if I was you. I would say I came out of sah land very much the same as you and although I was perhaps physically ok to go back to work within a few weeks, emotionally was a different kettle of fish. I was actually off 5months and when I went back it was more tiring than I had imagined it would be, so don't feel guilty about it and make sure you only return when you feel ready. I don't know what your job is, but don't forget most work involves brain activity and our brains ain't quite what they used to be!! Being tearful appears to be part of the course too, I know I've filled a few buckets over the past year! Don't worry even if you feel you need another sick note after this one has expired - just look after number one.

Take Care

Sarah.

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Thank you for all your messages of support, plus tips for future recovery.

I have just got in from a 3 hour stint at our local A&E... :shocked:

I had a blood test yesterday afternoon, and had a call this evening from my GP to go to A&E as soon as poss; cos my D-Dimer blood test was too high?... so back in a bed, wired up to ECG, BP, etc etc...

Then had a chest x-ray - and I have a chest infection; no wonder I feel so tired and have been a little bit breathless now and again today...so got anti-biotics for 5 days, and because the blood test has the high reading this could indicate a blood clot so had to have anti-coagulant stomach injection! And have to go back Sat (today!) and Sunday to have more injections (and they sting!)...until they can do an ultrasound on my leg next week!

This is one hell of an experience... 3 hospitals in as many months... CT scans, x-rays, lumbar puncture, drugs, injections... MRi coming up soon... what next I wonder???... :crazy:

Maybe I will be off work a little longer... oh well, at least I am being taken seriously now, and am getting checked out properly; I just hope that nothing else is wrong now. It would be quite nice to just continue recovery from SAH without any further medical issues! :roll:

Kel x

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As I wrote my post late last night, I thought you would be snuggled up in bed, not at A&E! - poor you. Just what you don't need. Rest up and take it even easier now - presume you are not back at your own place yet and can get a bit of pampering from family - sounds like you might need it!

Hope everything gets sorted very soon, take care,

Sarah

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Hi Kel,

you certainly have had it rough, I ended up with clots after my stay in hospital for seven weeks. The important thing is to have it diagnosed and treated like you are doing. Nobody likes to end up back in hospital, hopefully the daily injections will clear things up quickly.

Listen to your body and take things easy don't rush to get back to work, there are a lot of feelings to deal with and changes to cope with after your sah.

I know I have to start trusting my body again but after all you have been through that will take time for you to achieve.

I hope things settle down for you soon and the scan is clear so that you can concentrate on dealing with your sah.

Take care and good luck,

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Hi Kel

Am with the others on this one - its far too early to go back to work. You need at least three months off to even be able to come to terms with whats happened let alone start to heal. Listen to your body and give yourself time to heal.

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