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What physical problems have affected you?


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Once again, I'm looking to add further information for the projects on the home page of BTG ... so here goes! :wink:

What physical problem/s, have you been left with, since the SAH? e.g. balance, sight, ears, taste, smell, walking etc .... and please state what artery was affected or whether you were non-aneurysm and what stage of recovery you are at.

Many thanks... :)

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Hi Karen

Mine was the same as yours but opposite side. My main physical problem is the nearly constant neurological head pain now and of course the dreaded fatigue/tiredness when I overdo things. At just over two and half years since the SAH I feel I have made steady progress and I am now learning to accept the person I've become.

Janet x

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Hi Karen,

I had an aneurysm rupture which was in the anterior communicating artery which was coiled.

I still have problems with constant fatigue, balance and dizzy spells. My left leg is still weak and has not improved.

I have speech problems and the neurosurgeon feels that this is likely to stay.

I still have an aneursym that needs to be coiled and I still find it hard to think about it.

Overall I have come to terms with SAH, don't have a choice really but try and make the best of what is me. :)

Myra xx

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My rupture was in the left posterior communicating artery in 2004 when I was 54.

Apart from the dreadful fatigue I have very little sense of balance and have to use a three wheel walker all the time. Memory is very iffy and can only remember things if they have been gone over time and time again. Headaches have diminished in number but boy when I get one, I get a mother and father of one.

I do not know whether the balance problem was caused by the bleed or by the ensuing hydrocephalus that sent me into a coma and I had to go for emergency surgery to put a drain in.

I don't think the docs really know either.

I have just remembered that I also lost my sight totally in my left eye. A brilliant eye surgeon actually gave me it back by operating. I was told that the blood tried to find a way out via my optic nerve and eye due to the pressure. The loss of sight was due to debris being left at the back of the eye when the blood cleared.

I also have another aneurism on the right side in the same place, like a twin. This has never been checked since it was discovered. I am going to ask about it at my next neuro appointment which is on Monday.

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Guest ElaineW

Hi Karen Maggie's is mainly fatigue, what she calls "a terrible pain in her head that's not like a headache" and the memory is awful.

Elaine

(basilar tip aneurysm

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Hi Karen,

Mine was the right carotid artery.

Mine also is the nearly constant neurological head pain that i still get and have now been told it will almost certainly never get any better. Most days it is almost bearable but certainly once every month if not more I will be in bed for a day at least (like today :( )

Others symptoms still are the fatigue and tiredness that is much worse when I overdo do but is hard to deal with when young as freinds and family seem to think you can do late nights with no repercussion!

The other main pain is the back pain, they are not sure whether this was caused by the incorrectly carried outlumber puncture or because so much blood had seaped down my spine because it wasn't diagnosed for a week!

My memory isn't is good as it was and I have to rehearse things I want to remember and commit them to long term memory otherwise thats it and my emotions are much worse now. I cry so easily it is unbelievable, its almost a daily thing.

Oh how life has changed! I still feel lucky yot be alive though :D

Love and hugs

Laura

xx

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Mine were on the cerebral artery I still get headaches occasionally used to be everyday and used to get dizzy everyday (almost) but that has gone now might pop up on occasions. Jess.xxx

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Hi

It was the right pica annuerysm I had treated and also had a shunt inserted to relieve the hydrocepahalus.

I have been left with deafness/tinnitus in my right ear, numbness around my stomach, numbness in my toes and weak legs - I find this really frustrating and annoying. The fatigue also hits me now and then. I dont have any headaches. Am begining to come to terms with it all and moving on!

Caroline

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Hello Karen! Don't work too hard, you make me feel bad :wink::wink: lol!

now 15months on from rupture of aneurysm in rt cerebral artery. Also have shunt because of Hydrocephalus. Improving daily but still plagued by, fatigue, giddyness, poor balance and a very 'iffy' memory. Am not sure if this has a bearing but apparently I need a recoil as there is some slippage and residual bleed, which I assume will slow down the recovery :roll:

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Hi Karen

My rupture was at middle right cerebral artery and aneurysm burst just in front of right ear lobe, affecting temporal lobe (18 months ago, when I had just turned 44). The main physical things I've been left with are - loss of about half my hearing in right ear, constant tinnitus in right ear (though am used to it now) also distorted taste. I had a very strong sense of smell after my SAH but that has calmed down a bit.

I've not had headaches nor eye/balance probs. I had a lot of fatigue in first 8 months but it has improved greatly and stamina now reasonable though about every month or two I do get very tired for a few days at a time but then it goes. My memory and concentration were also affected but I think they have also improved. However I don't have a good memory for faces. I've lost some left side awareness though not sure if it's better or I'm more used to it.

I had at least 2 vasospasms after my coiling and I think they caused a lot of my probs.

The thing I found hardest to cope with at first was the distorted taste. It really got me down and I felt very isolated with it as my GP, neurologist etc had never met anyone who had it.

Oops sorry for rambling about my ailments, look forward to hearing the results of your research.

Love

Anne xxx

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Thanks Guys for your response.... :D

Perry, I'm just naturally curious or nosy! :lol:

I'm trying to see, (I'm really finding the right words hard to find, to explain it....so bear with me!) If those people that have had an aneurysm on the same artery, are experiencing the same type of problem .....

That doesn't exclude non-aneurysm bleeds, as I would also like feedback on those too..

I also would like to know, of those, who don't consider themselves to have physical problems now ... as to get a fairly balanced picture.

I'm no expert and only an amateur, so I'm kind of wandering around.......mainly in the dark! :wink:

Love K x

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My SAH was the left middle cerebral artery ( I found the paperwork :) )

My physical problems are mainly tiredness, headaches and tinnitus and a shocking memory.

The headaches and tiredness have improved with time ( mine was 2 years ago) still got tinnitus and bad memory

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Hi Karen,

Mine was on the right posterior communicating artery.

I have been left with daily headaches (about once every three weeks they put me in bed for 2-3 days), when tired I mix up my words, become clumsy and drop things and trip over my own feet. I also have concentration problems which presents itself as memory problems and my processing of information is slower than it used to be...

Let's see. I also am much more phono-sensitive. I still get tired much more quickly than before. And it takes a day or so of doing absolutely nothing to recover from the fatigue.

My mouth (result of the craniotomy) doesn't open as wide as it used too which has caused problems for dental access. I have to be sedated in hospital to have a filling in the hope that it will relax the muscles so that i dentist can get in there. None of which I was warned about in hospital.

The crainotomy has also left me with a constant feeling of pressure on the right side of my face just above my eyebrow. I look as if I have had botox but only on one side of my face as my right eyebrow no longer moves!

The onky thing that bothers/worries me are the headaches as it is both a constant reminder of the SAH and a worry about the unruptured anni or infindibulum.

But I'm still here ...

Leo xx

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HI KAREN

I AM 3 1/2 YEARS IN MY RECOVERY. MY HEARING AND EYESIGHT HAVE BEEN AFFECTED, I STILL GET TINGLING SENSATIONS IN MY FACE AND RIGHT HAND, I ALSO GET THE SHAKES IN MY RIGTH HAND THAT COME AND GO, SWOLLING CAN BE DIFFICULT AT TIMES, SHORT TERM MEMORY IS A PROBLEM, AND MY BALANCE CAN BE A PROBLEM, I STILL GET PAINS WERE MY COILS ARE, ASWELL AS DIZZY SPELLS AND SOMETIMES I FEEL TRAPPED INSIDE MY HEAD, I HOPE THAT MAKES SENSE, SOUNDS AND VOICES BOTHER ME, WHEN I FEEL THIS WAY. I AM ALSO STILL GETTING MINI SEIZURS FROM TIME TO TIME.

I HOPE THIS IS HELPFUL.

TAKE CARE EVELYN

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Hi Karen,

I am still suffering with photophobia with terrible eye pain, wearing my really dark glasses outside (i have 5 diff pairs now) and really light sunnies inside i get the occassional day when i can take them off for between 10 mins to 1/2 an hour depending on how bright it is.

I now wear hearing aids for high frequency loss and suffer with tinnitus in both ears which i can cope with most days. I wear a toe-off leg splint on my left leg due to foot drop something i didnt have 1st time around and i fall over/down if i take it off, i have a wheelchair because i cannot walk very far, my short term memory is non-existant i have trouble learning/processing new things even after reading the same page 3 or 4 times its still dosn't 'go in' and when fatigued i cannot find the correct words for objects and muddle words up i end up pointing at things or saying a word thats starts with the same letter.

I have fatigued problems pains/aches in my back legs and arms with tingling sensations in hands/fingers. My balance is affected lately especially together with head/eye pains which is more frequent.

Love Michellexxxxxxxxxxxxxxxxxxxxxxxxxxxx

p.s glad to be here though!! :D

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Hi Karen

Mines was 9yrs ago and things are a lot better but still the fatuge at times short term memory is really bad when I'm tired as is the walking and my shaky hand, and my taking things onboard is as bad all worse when tired or stressed up.

apart from that I'm ok

L.x

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Hiya Karen,

It was my left middle cerebral artery which was affected and i'm 7 months down the recovery line.

Iv'e found i can't walk for a long period of time without having to have a rest, if i don't have a rest i find my balance goes and i start to go off in all directions, also i can't put my head back to look up, this makes me dizzy, the same thing happens if i bend over to pick something up. My sight has been slightly affected, i'm getting an aura in my right eye and according to my optician my " tear film " is as dry as a bone, this explains why my eyes keep going red, to people who don't know me, it must look like iv'e been on a bender, red eyes and wobblin' all over the place :lol:

Jan

xx

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Thanks guys for your responses.... :) It will be interesting to see the results...

Jan, I also suffer from dry eyes since the SAH (had a III nerve palsy to my right eye) and was given lubricating gel and drops when I left hospital ..... they seem to go through spells of not being too bad...to awful ..... at the minute, they're awful and even worse when I open my eyes first thing in the morning (almost like I've been sleeping with my eyes wide open) ..... so, I'm using eye drops again. I'm due to see my GP this week, so am going to mention it again and perhaps get the gel prescribed again.

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Hi Karen,

Jim suffered a non-aneurysm sah December 1, 2007. They stated it was a vessel in the back of his head. He still gets very tired easily. He has lost the job that he once loved due to not being able to complete the tasks that were assigned to the job.

He still needs to sleep everyday for at least a couple of hours. His muscles are not what they were in his legs leaving him to be stiff a lot of the time. His memory is not what it use to be but, his spirits are good and he has a wonderful therapist that is helping him so much.

He also has me to keep him going! :lol:

Cal

XXXX

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Thanks Cal! :D

I want to gather as much info as possible, from non-annies like Jim and also want to hear from those that aren't experiencing any physical problems at all, since the initial bleed.... and have managed to return to normal or near normal life ..... it's all interesting stuff....and it would be great to cover as much of the "SAH spectrum" as I can and relay that information onto this website, in some shape or form....

Hope that Jim is keeping well and glad that he is in good spirits..... he obviously has a very good woman to keep him going! :wink: xx

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Hi Karen.

I don't really have any problems except for fatigue and sometimes feeling unwell if I overdo things and some short term memory problems, but all the issues are minor. Essentially, I have returned to very near normal life and can do everything I could before SAH and it took about a year before I reached that stage. As you know, I had a TIA a couple of months ago, but I don't think it was related to SAH.

Aneurysm, left posterior inferior cerebellar artery (PICA), coiled, 2.75 years ago (2.792 to be precise).

Regards

Keith

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Hi Karen

My aneurysm was in same place as yours. The problems I suffer are exhaustion, headaches and loss of balance which is increasing. I am also impatient and very short tempered. I have also discovered I am now diabetic and was told by one health professional that this may have been caused by the shock of the aneurysm however I'm not sure about that one. I also get very depressed but I believe this is being caused by the wait I am enduring for my re-coiling (Yes I'm still waiting!!!).

Hope this helps.

Cheers

John

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Thanks Keith and John! :)

Bless you John, I would also be fed up, anxious and depressed with all of the worry of waiting around for re-coiling and being left in limbo ..... really hope that you hear something soon.....xx

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Hi

I'm 18 months post SAH and I was just wondering if people have noticed physical improvments continuing after the first 18 months or so? I was speaking to someone at the weekend whose brother had a SAH and she said it took him 10 years to gain his full strength again, energy wise. I'm still hoping for an improvement in my distorted taste though no idea if I'm living in false hope!

Warm wishes

Anne

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I didnt notice improvements myself till around the 3rd year mark, although others had noticed the improvements think they were too small for me to see.....

I think its really a continual thing Anne.....

take care

Louise.x

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