Invasive PICA clipping surgery

[Nurianna]

Hello to everyone and Happy New Year!

I have been away for a while and in the meantime helping to open, support and try to contribute with what little I know on aneurysm websites in my country. But this was my "first home" and this is where I always return....It´s the best.

I am almost 2 years post-SAH now. I can´t believe it! The more time goes by, the more I am finding myself finetuning issues that were left for "time" to take care of. Well, it hasn´t so new questions arise.

I underwent a 12 hour invasive craniectomy with permanent flapbone removal to gain access to the aneurysm. After almost two years, these are some of the sequels that have not disappeard over time.

- A permanent feeling of having my head badly screwed on

- A stiffness in my neck which gives a rubbery-resistant sensation when I rotate it.

- Insensitivity in most of the back of my skull.

- A bad perception of space-distance regarding my head so I have to be careful of my tendency to bang it easily.

All this time I have patiently awaited to improve over time but nothing is happening. According to my neurosurgeon, this is "normal" and to carry on waiting. He doesn´t pay any attention to this type of thing and waves it off.

The problem is that I have noticed a tendency in me to move less over time. It´s slide I don´t want to go down. I think I´m beginning to suffer give-up-itis.

Has anyone else been through this particular surgery or can relate to any of this?

I am beginning to feel desperate on this issue. All the rest, more or less ok.

Thanks and love to you all,

Nurianna

[Janet]

Hi Nurianna

Happy New Year to you also and nice to hear from you again. Its also good to hear that you are helping to provide support to other SAH survivirs in your own country.

Like yourself I also had a craniotomy and I am now just over 3 years into recovery. I also still have the constant numbness around the operation site and have difficulty with mobility of my head. It does not like being moved to quickly from left to right or up and down.

You mention insensitivity I suffer with constant nerve pain in the left side of my head that can extend into my neck and also my cheekbones eye socket. I discussed this with my Neursurgeon who has stated emphatically that :-

a) The numbness is a result of the surgery and may or maynot ease with time.

The pain I get is nerve pain probably caused by a trapped nerve in the brain itself.

The only treatment is with low doses of anti-epileptics or anti-depressant drugs which in low doses can ease nerve pain. Basically I have to live with the pain as I'm not a suitable candidate for MRI scanning which would allow proper diagnosis. and show if it is indeed a nerve trapped.

I can so empathise with the way you are feeling but just remember that recovery although slow at times does still continue. Its like most things learning to adapt your lifestyle to the altered you it is hard at times but I'm really thankful to still be here to do it.

Best of luck with your website and hope to hear from you again soon.

[rod123]

Hi Merrill also suffers permanent numbness in the right side of her head and her head is very bumpy where they replaced the flap she also has stiffness in the neck but she had a shunt fitted which was what we put this down to,Merrill also seems to suffer from a hyper sensitivity to certain medication as in that medication that she had taken before the sah just completley wacks her out now

[jess]

Hi there my head almost feels like it used to now a few bumps and that but ok hopefully yours will ease with time too. Jess.xxx

[Leo]

Hi,

I have just passed my 2 year anni on New Years Eve!

Unfortunately, I too, still face issues/problems everyday following my craniotomy. I have headaches practically all day everyday. They can be extremely debilitating so I can understand that you are feeling depressed. They have had a profound effect on my day-to-day life so I am never without a reminder that I have survived a SAH.

You are the first person to describe exactly what has been happening to me in regards to banging my head a lot! I have worked out that when I have a very bad headache or am over tired I become clumsy and have a tendency to fall over (was fun in the summer wearing skirts!) and bump into things. I didn't even have so many bruises in primary school.

To be honest my doctors seem unconcerned. The swelling around my scar has subsided gradually but it is still visible although it doesn't bother me. The heaviness around it and above my eye has not changed and I still look as if I have had botox as the right side of my forehead does not move. However, it is none of these issues have been deemed a surgical deficit so I am trying to negotiate this new way of being myself. It is not always easy and I do find myself getting extremely cross with myself or crying in frustration/depression on bad days.

I just wanted you to know that you are not alone with your symptoms or in feeling depressed and out of sorts.

I hope that you have somebody close to you at home that you can share your thoughts/fears with.

Hugs,

Leonie

[Nurianna]

Thanks to all. I really appreciate your replies because it makes a great difference in perspective to know I am not alone and I do need support. In response to Leonie, yes, fortunately I do have a few people I can be honest with about how I truly feel. Not many and these do not include my neurosurgeon, family and less than anyone my boss and co-workers since I have to prove I am still "competitive". I usually am the "strong" one, that has always been my role, even when answering the e-mails I receive from people in my country who also seek help. The problem with that is that when it backfires and it´s my turn to feel down, I find it very hard to deal with. When I go down, I go down.

Anyhow, I have made an appointment with a private traumatologist to try to obtain a diagnosis about my neck and some other issues I have with my left shoulder. I have been waiting for six months for the Social Security to appoint me one and I have had enough. It´s my Christmas gift for myself. When making the appointment over the phone to the receptionist and mentioning that I was a neurosurgery patient, in less than ten seconds the doctor was on the line himself to cautiously ask what I needed exactly. After I had explained he was very kind though totally uncommittal and said that if there was anything he could do he would do his best. I intuitively liked him and put down the phone with a good impression which makes a nice difference over the usual.

Just taking this little action has given me a boost and though I expect no "miracles", I will be happy if I can just obtain some straightforward information which is much more than I have right now. The worst for me is not knowing exactly what I am dealing with. If nothing can be done, then I can move on to trying to accept it gracefully.

I will report on the appointment.

thanks again and bless you all,

Nurianna

[Celia]

Hi Nurianna, and fellow craniotomy folk!

I had my left side PICA clipped at the end of November, and am now back in the land of the living....sort of. I know that it's really early days for me, but I can certainly relate to the post surgery symptoms you're experienceing:

- A permanent feeling of having my head badly screwed on - yep, me too!

- A stiffness in my neck which gives a rubbery-resistant sensation when I rotate it. I feel like I've got half a tennis ball glued to the back of my head

- Insensitivity in most of the back of my skull. and a random sharp tingling in places.

The other irritation I experience is an odd sort of "pulled muscle" stiff/tender-ness in my left shoulder. What on earth is THAT about?:confused:

Anyway, I don't think that the Neuro guys have much to say about these things; I'm due to see mine at the end of the month so I'll let you know what he has to say (but don't hold your breath....).

Re. depression - are you taking any anti-depressants? I got very low and anxious about 2 months after the original SAH, and my GP (who is a marvel!) prescribed an antidepressant which I think is keeping me on a more even keel. I do feel low and/or anxious at times, but it seems far more manageable now. Worth a chat with your GP, I think.

I hope that things work out for you. All the best,

C

[Nurianna]

Celia, I have the same issue with my shoulder...how curious. About anti-depressants I would have no problem in having them prescribed but I am terrified of them. I fear I won´t be "me" if I take them or that I will never be able to get off them if I start......Urban legends in my head. I don´t really know anything about them, what they do or how they work.

[Janet]

Nurianna in low doses anti-depressants are some help to relieving the nerve pain. I have been taking a low dose of Amytriptiline (spelling) on and off for over 2 years and they do help quite a lot.

[Tina]

Hi Nurianna

I can relate to all of the above....even my left shoulder Celia....weird ! I put it down to driving again...but has been so uncomfortable that i cannot sleep on it.

My headaches have improved....but are bad if i over do things. Fatigue, balance, blurry vision and nerve pain in my face and short term memory are my constant problems. I cant multitask like it used to and this really frustrates me big time. Also my forgetfulness...i was so on the ball and in control.....this i find drives me insane....i get very cross with myself.

I was hoping to be back to work by now....but know and have accepted i am still not quite ready which has been hard, as i feel i have let myself and everyone down.......i ran my own business from home...marketing/research. Maybe not now...but i will get back to the old me...i am determined!

Leonie....i am the same....my right hand side of my forehead still does not move....i cover it with my fringe. My eye brow still does not move but twitches at the side of my eye when i try to move it. My Consultant said he thinks he cut the nerve...but....it has improved from 2 years ago so i still live in hope

I have had some really down tearful times too....my emotions seem all over the place sometimes.... suffered from panic attacks and get very anxious....this has also got better....still gets me from time to time....but always try and be positive and keep smiling I can empathise with you too as Janet has said... it is hard learning to adapt to the new you....but i am also very thankful to be here to do it. Hang in there xx.

Take care

Love Tina xx

Edited January 6, 2010 by Tina

[tennissmithy]

I take the same tablets as Jan and I must say that usually they do work quite well. I did try loads of others first though so it is trial and error!

Tina- I'm with you on the emotional front- i've been like it for a week or so!

[Leo]

Hi Nurianna,

As for the antidepressants, I think the only way to make an informed choice is to speak to your GP. They make think that you do not require them but may refer you to a counsellor due to PTSD or something. But you'll only know by taking the step and opening up a bit more to him/her.

I am glad that you have an appointment with a private traumatologist - is that the same as a counsellor? Have never heard of that specialism but then again I had never heard of a SAH until it happened to me! Its a shame that the wait was so long an frustrating for you that you felt pushed into paying for it yourself but on the other hand, hopefully this is the start of something positive for you.

Tina, I am glad that I am not the only one wandering around with a semi frozen face. I am making light of it because in the scheme of post-surgery complications/issues, this one I can live with ...

Hope you all have a good evening,

Leonie xx

[Celia]

I agree with Leonie - in the scheme of post-operative issues, I can certainly live with these.

Nurianna - I understand that the new range of anti-depressants are non addictive. I would really recommend that you have a chat with your GP - voice all of your concerns and ask lots of questions. When I approached my GP for them I felt a bit like I was being weak and "giving in". I'm glad that I did. For me it's the difference between being anxious and tearful all day, and being able to just get on with things.

Wishing you well,

C

[Tina]

I agree too Leonie and Celia....is a small price to pay :) xx

[Nurianna]

Leo, I am not sure of the right translation in English, but a traumatologist here is a specialist who deals with physical issues such as broken bones, muscle and joint problems that are not of neurological, rheumatic or any other illness produced origin. They also deal with some post-operative related problems if these enter their field. The rehab doctor referred me to one but I have decided to pay-per-view because I´m tired of waiting to be called. Maybe nothing can be done but I will try to get the most accurate possible diagnosis.

I am seeing my GP in about an hour and I will ask her about the antidepressants, bearing in mind much of what I have read here which makes me wiser that just a few days ago!

She can also refer me to a psycotherapist regarding my PSTD which is bad at times specially when I feel dragged back to the six-week memory gap I still have when something triggers it.

Wow! It has nearly been 2 years since the SAH and only now I have the feeling that I am sort of coming apart on so many fronts! It´s a really weird sensation but on the other hand maybe I wasn´t ready to voice and deal with any of this before. Anything that "rocks my little boat" is scary at first.

It makes a whole world of difference to read your shares and suggestions because I realize how little I know about something until I get to it.

[Nurianna]

HI!

My appointment with the private traumathologist came up and he diagnosed a tendonitis on my shoulder. Al least I know for sure that the lack of movement is not neurological. He said the injury could have ocurred when I banged it during the SAH epilectic seizure I had, or for being moved and pulled about all night by the emergency proffesionals during the various transportations, or just by laying 12 hours head down on my left shoulder during the operation. What caused it doesn´t matter in the least.

He performed an infiltration in which he injected a mixture of aneasthetic and medicine directly into the tendon and slight improvement was inmediate. What a relief because that could mean that surgery is not necessary! You are not supposed to have too many of these injections so I am hoping that one or two more, plus a suitable physical rehab programme, now that I can move it again, will do the trick.

It was worth paying for it because after months of waiting I was really beginning to get depressed.

I am glad I took action because there was a solution. The social security rehab doctor I had at the hospital just told me to get used to live with a numb shoulder. That can be true in some cases but not in all and I need to be sure of what can be changed and what has to be accepted.

[Leo]

That is really good news.

Isn't it shocking that the social security doctor told you to get used to living with a numb shoulder? Like it is nothing. The inconsistent treatment and advice we receive is dreadful. But like you say, thank goodness for the help and advice available on this forum.

Hope you have a good weekend - and don't go lifting anything too heavy with that shoulder now that it feels a bit better!

With Smiles,

Leonie x

[Tina]

Great news hope you will keep improving . It is bad that you had to pay for it....but what a relief

Take care love Tina xx