Shunts

[Penny]

Good morning. It's been very snowy and cold in Norfolk UK. Does anyone have any advice re Shunts? I had one in Oct following my SAH as the CT scan showed the cerebral stuff wasn't draining properly. My consultant says the shunt isn't causing my dizzy heavy head, but the right side of my neck where the shunt tube comes down is very very tense. I can feel the neck standing out. I daren't massage it in case I upset the tubing., surely this is causing tension in my head.  It is over an hour back to Addenbrookes hospital and Ivan petrified of a further operation. My hair has only just started growing again!

 

Does this discomfort ever get better this is the seventh week.

Best wishes to all Penny

[Winb143]

When I first felt my tubes running down behind ear and neck I winced lol.

 

It never hurt but took a lot of getting used to it.  I do a gentle massage on mine when I feel tired a 1 finger massage only!!

 

Is yours a permanent shunt ? Mine is.   

 

I was glad when my stitch healed in tum as I thought it might burst with all sweets I was consuming !! ha 

 

Daffs had to have hers altered xx She has a different shunt to me  

 

She will see this and reply  xxx  So glad I had it done as it was like a light going on and I was so happy to be back from cuckooland.

 

Good Luck Penny and try not to stress too much xxxx

 

[Daffodil]

Hi Penny, 

 

first of all well done for finding us and also weathering the shunt op as it's not the most pleasant of operations and yes the haircut that comes with it is no Picasso. 

 

All around the shunt tubing will will be tender and sore for a while yet, remember it has had to be forced into position, that might sound horrid but the reality is you will still feel bruised for a while yet, that was my experience anyway. Gentle massage on your neck and head just where you feel comfortable is a good place to start, you don't have to go near the tubing and I use a oil I like the smell of : rose, and that helps me relax as well. 

 

The dizziness is possibly a reveal of the effects of your SAH but also that you have not been draining cSF properly for a while since your SAh so you will have had a level of hydrocephalus so the brain is now adjusting to the new pressure and trying to recover from being squeezed.

 

My Best answer, move slower , don't rush to stand, sleep propped up , wear sunglasses, limit cognitive overload and build up slow and steady  and if the dizziness doesn't improve or gets worse then go get checked. Don't ignore symptoms that get worse. 

 

I have an adjustable shunt, which means my setting can be changed and mine was a few times until I got to a rate that was comfortable for me, but I hasten to add the symptoms that led to that decision were very extreme vomiting and dizzingness and no balance at all  so I am not suggesting that is something to worry about. 

 

Hope that helps. A shunt is a lifesaver don't forget but it's not a natural state for the brain so it can make things clunky some days ; weather changes do it for me and Win and Louise! 

. 

( ps thanks for the cue Win! I'm like a no73 bus, you don't necessarily know when I'll be here but I usually turn up eventually! ) 

[Louise]

I had that with my tube (I also have a shunt but what you describe sounds more like my tube) in time this did get better like everything it takes 'time' 

Re: dizzy and heavy head are you keeping yourself well hydrated could be as simple as that.

 

everything just takes 'time' to settle down..

[Penny]

Hi ladies thank you for your encouraging words.

 

My dizziness won't go away. I can totter around in the house with no stick. Not up and down stairs. But worry that this constant dizziness and not being able to walk without staggering is something that can be adjusted or is it brain danage? Addenbrooked in Cambridge is over an hour away. Does everyone feel dizzy /drunk. Does it get better? Is this thick/muzzy head for life?

 

I have already turned two of my three sons and family down for Xmas as I think it will be too much. I want to take my head off and put a new one on!! It's eight weeks since the shunt and July 8th since the SAH

 

Best wishes

Penny 

[Super Mario]

Penny, I have dizziness and very little balance from 13 years ago. I have to use a walking frame or a mobility scooter all of the time, I also have a stairlift and my own adapted bathroom, a carer because I need help showering and dressing.

That is not saying yours won't improve.

 

If the symptoms are caused by brain damage they may possibly improve in time. Mine haven't because the area of my brain that is damaged hasn't repaired itself. I am of the opinion, in my case, and it is only my opinion, not medically endorsed, that the hydrocephalus did the damage not the SAH as it wasn't detected and I fell into a coma so had emergency surgery within minutes of going into that coma.

Please do not take this as negative, yours may well be caused by something different and improve.

 

I strongly advise you to contact the hospital where you were treated. Have they got a specialist nurse you could ring? I appreciate the hospital is a distance away but I think that is the only way you are going to get answers.

 

We are not medically qualified therefore cannot give an opinion or any medical advice on your condition. 

[Winb143]

As Super said Penny all we can do is tell you how we were and sometimes a trouble shared etc ...xx

 

I get giddy especially when I need the loo, usually 3 am !!  (always tell too much info lol)

 

We need it or else why put it in !! So look at it as help and when head gets itchy etc  bath it in warm salted water as it helped me.

 

We need calm and no stress in our lives so if I have said this before my apologies xx

 

Good luck and God bless 

Win xxxxx

 

[Penny]

Daffodil

thanks for the advice. How long does the shunt adjustment take? Are you in the UK? How long do they give you to see if the adjustment works? 

Thanks Penny 

[Super Mario]

Penny, yes, we are in the UK. Although I can't answer how long is given to see if the adjustment is correct for you I can tell you that the actual adjustment only takes about 5 mins maximum.

[Penny]

Hi Super Mario

yes in East anglia. Did you feel the improvement very quickly? Do you have to stay in hospital to see if it’s worked. Petrified of having to stay in hospital again. An unhappy time. 

[Super Mario]

Penny, I was already in hospital when I had the shunt fitted. Unfortunately I can't remember any of it at all so I can't answer any of your other questions.

 

I only know about the resetting because I have had a couple of MRI scans in recent years and have had to have it reset both times because the scans altered the setting because of the strong magnets involved. 

[subzero]

Hi Penny ... so sorry to hear of your anxieties with having your shunt in place.

 

There are many observations within the site if you choose to search `shunt`  on the Home page.

 

Take care

 

 

Subs

[Skippy]

Hope you can get it sorted hun x

[Daffodil]

On 29/12/2017 at 16:38, Penny said:

Daffodil

thanks for the advice. How long does the shunt adjustment take? Are you in the UK? How long do they give you to see if the adjustment works? 

Thanks Penny 

Hi penny, 

 

ill try and answer your your questions as best as I can and I really do understand your worry and concern as it’s horrid to feel not right but have everyone tell you it’s unconnected to the shunt. My advice would always be you know what is right for you and if symptoms keep coming and going then it may suggest the setting isn’t right for you and you are too low pressure. 

 

so sharing  my story. It may help set context . Sorry if it’s overly long. 

 

So I had my SAH (grade4 ) with the resulting hydrocephalus  in March 2012, had an EVD placed after my SAH which stayed in place over 5 weeks but then they were happy that I had enough ventricle drainage so it was removed before I was discharged a week after that but with a note to my doctor  to keep in touch with how I was doing. I discharged mid April, went home and felt I was gradually improving and then I started going backwards fast. My fabulous GP (who sadly is retired now,)  saw me, took one look, did Neuro test and said did I want him to call the ambulance or happy to go to hospital myself. That was at end of June. I was admitted , transferred by Blue light back to London and then had a gruelling 10 day’s of lumber drains, LPs, and MRIs before consultant said it’s time for a shunt.

 

I had an adjustable VP Pro Gav Meike shunt placed. It has gravitational valve and is not affected by MRIs and the setting can be easily adjusted externally. It’s is done by pressing hard with what looks like a ratchet  against the round valve , it checks the setting and can change it it, it literally takes seconds to do but only the kit as at treating hospital. 

 

I had mine placed on the recommended  setting of CSF drainage  which was based on calculation for my body mass but within six weeks of getting home I could not stop being sick or falling over and had dreadful head pain , no appetite and vision issues. This  is the classic symptoms of how low pressure CSF manifests for me which i and Team knew from previously and I am very sensitive to pressure change i have learnt .

 

So  Hospital said come in, I did (and it’s Well over an hours journey  for me ) and I was being sick in the car so was not an easy thing but in I went and they raised the setting by 2 . Back home, no stay needed and we gave it another 6 weeks,  to see if things improved, no, so  back again , with similar symptoms , raised setting again by 2 and this time I got high pressure symptoms which I recognised from prior to shunt placement...basically memory and senses dulling and fingertip pressure all over head. So back I went again and this time setting down by 1 and then I just sat tight and got used to thAt . and I’m still on that setting now although we discussed earlier this year that a change may be in my future ....fingers crossed not.. I haven’t ever needed to S tay in for a change, only ever when I have had to have checks like angiogram or other investigations like LP. . 

 

one thing to point out, which is when I reached a setting that worked for me it was no bed of roses for a long while, I still had nausea, dizzy spells, strange head effects but the point was I could live with the level of that and I couldn’t before that , it was finding a level bearable for me and from where i could start my recovery again . 

 

The reality of whether having a more tolerable setting revealed to me more of the SAH bleed after effects more than I had known them pre shunt  I’ll justnever know but just saying I dont think it’s likely a person would  feel better fast in our cases...too much invasive surgery, dramatic changes in CSF pressures all combined with effects of the bleed. It’s not a great hand, it’s a lot of trauma. And i agree with SM, I think the hydrocephalus does some damage and balance was definately a big deal for me for a long time. Better now but still off when I’m tired. 

 

I hope you have someone at the hospital you can talk to and decide what’s right for you now.  They may decide to do some tracking , they may do other investigation, they may say wait.. My team knew me well enough because of my history that they were happy just to try an adjustment but recently when i had challenges we were all a bit in the dark as to what was best course of action  as the answer is that it’s not an exact science and one size does not fit all. 

 

Go go with your gut instinct, that’s all I can advise. 

 

Hope that is helpful 

[Penny]

Thank you it is very helpful. I am the same. Dizzy, nauseous, sick and wobbly. It is nearly 3 months since my shunt and I think my consultant needs to consider altering the setting to see if I improve. I agree I have been told that the headaches may be a result of the original SAH and aneurism. And I may have to live with it. Oh joy!  Glad you are improved. Penny