Pain after VP shunt

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Cath278:
Hi all. I hope you can help me with my problem.I had my VP shunt on the 25th Nov. I would say it was a great sucsses! All headaches gone and eye pain getting better by the day.The problem is  my side. Since the operation I have the worst pain in the right hand side( same side as shunt).I cant stand up right with it. It is a very sharp pain,coming and going all the time.I was sent back to hospital 6 days later to see what the problem was. THey said the tubing was in place and sent me home with painkillers. I am seeing the surgeon this Wens to disuss the pain.It has been suggested that , with keyhole surgery, they move the tubing to the left side. Im at a loss what to do next and so very disapponted. Here am I , for the first time in 15 mths, headache free and i cant enjoy it!Has any one else had this problem and how did they resolve it? Many thanks to you all. Cath278.

Celestia:
Hi Cath - What you're experiencing at the moment sounds totally normal for so soon after a VP shunt, especially if you've been checked out by the hospital since your operation. I had a revision to mine at the end of October, including the distal catheter, which I hadn't be expecting (the surgeon, after fixing the ventricular catheter wasn't happy with the drainage from the distal catheter and decided to renew that). You're still only a couple of weeks since your op, so things won't have settled down yet. It's 6 weeks since mine, and though it's settled down a lot, I'm still getting occasional twinges. One minute I get a sharp pain in one spot, then a few minutes later it goes and starts up somewhere else (hours of amusement playing the "guess which bit's going to hurt next" game! :lol)

Apart from insides not taking kindly to having a surgeon rummaging around and moving them about, your body's not used to having a bit of tubing floating around inside it (usually they tend to leave the distal catheter "free floating" and not fixed to anything so that it doesn't stretch when you bend etc.), and the tubing from a VP shunt (and LP shunts as well) irritates the internal organs, as does the fluid that drains. When I had my first VP shunt, the night after I got out of hospital I was in agony with what felt like gallbladder pain (fortunately it wasn't that severe for too long though). Fortunately a lot of surgeons do warn about the abdominal pain (mine did), but I think often unless they've actually experienced something similar, they don't realise how much pain and discomfort it can cause. It'll take your body a while to adjust to it, but usually after a few weeks your body gets used to it being there and it doesn't cause so much of a problem. After 5 shunt ops in 4 years I've found that apart from keeping topped up with painkillers, often gently rubbing the affected area can ease it and shift the tubing slightly so that it doesn't irritate whatever it's been irritating to cause the pain.

Hopefully it's just that your body's not got used to the foreign object yet, and it'll settle down in a few weeks, but discuss it with your surgeon on Wednesday and see what he says. Usually though it resolves on it's own in a few weeks unless it's got itself somewhere it's not supposed to be.

emmaokane:
hiya cath
just thought i would write to ask you about your shunt op as u have had it quite recently,iam due in go into hospital this wednesday with my op being thursday,iam absolutely terrified that something will go wrong as i havent had much look with my health and complications seem to follow me around.its really strange ive had operations in the past been through childbirth 2 and half times(ive had twins) and never been this scared.i was wondering did u have much pain intiationally i know uve said about the pain in the abdo but what about your head was there much discomfort.how long were you in hospital theyve said about three or four days but everyone seems to be different.im just having a real hard time getting my head around all of this keep wondering why me the hospital dont know why all they say is im not a typical case as im normal weight,have enlarged ventricles etc its really hard when no one can give you a definitive answer anyway best wishes with your recovery hope your better for christmas :smile

Cath278:
Hi Emmaokane.

I'm so glad you saw my post and that you replied. It means I can reassure you about the operation! And with my hand on my heart I can tell you it was definitely the right decision to have it done. Even with the set back of the pain in my side.

One of the reasons I had the VP shunt done was because of my declining eye sight as well as the headaches from hell.Like you , I didn't fit the type of person who should get this illness. And from all Ive read and talked about here with others, there is no type.
I had tried all the other first line attempts , lumbar puncture, Diomax, etc, with no success so surgery was decided. I had a lot of false starts and got sent home twice( don't panic! problems with beds) but finally went in to hospital the Mon24th.

All day long I was prepared for surgery and got to know the team who would be taking care of me. I had my surgery done with "stereotaxis navigation"  because my ventricles were almost closed. Find out if you are having that done and I will explain in more detail. Its no big deal, it doesn't hurt. I had my surgery at 3.30pm Tues. I was back on the ward at 7.30pm. That is a bit longer than most people but I'm taking steroids for over a year so they had to be extra careful.

How did i feel? I could have got out of bed and walked if they had let me! My headache was Gone!!!The terrible pain in my eyes , gone. I was sore of course. When i bent over, my stomach wound pulled. I would compare it to doing an exercise you haven't done before. The ache you have the next day? But no big deal at all! My head , the same. Sore, tender but OK. I was expecting it to be much worse.

Now, when did I go home? The next day! Thats how good I felt. I wouldn't re commed that tho. Again, it was because of the steroids and high risk of in infection that they let me home but I felt able to go. You should be there for 4-5 days and do stay. Let them look after you.

I'm now 10 days post -op and if you put the pain i have in my stomach aside, I'm doing great. I haven't had even a small headache. Would I  do it again? In a heartbeat! So please Emma, dint be afraid. This will be the start of a new life for you. You must be pretty sick if they are doing the shunt op so you can only go up from here. I was like you , in Sept, afraid, but by the time it came to the date I just wanted it over. The pain in my side is an unfortunate setback but as Celestine reassured me it will be OK soon. I am taking mild painkillers for the pain but if that wasn't there I wouldn't need any.

Just a few tips,
You will need to wear a hat out doors and maybe in doors to. My head was frozen from the hair being shaved!
Sleeping was a bit of a problem for me as I sleep on my right side and I couldn't lay my head down on the wound. It was much too tender for that pressure but I got over it. I can now sleep on it.
When you sit down , for example, in the living room, put every thing where you can reach it, so you dint have to be bending all the time. You wont want to do that for at least a week.
When you bath or shower, if you can, have some one with you. It will make you more confident and in cause you slip there is some one to help you.
Be prepared for the tiredness! I had no idea I would be so tired. Now , I would say, take naps when ever you feel like it. I think you have children, dint worry about them too much. I was so worried about mine until I realised they would be OK. And you wont get better if you dint rest. My son , who is 8yrs, sat and watched movies while I  rested on the couch. He was also a great help with lifting or reaching for things.

I know I  have rambled alot, but I really do want to make you feel more confident and sure of this next step. Every word I have told you is the truth, including that i would do it all again ! Please let me know how you are and feel free to ask any questions at all.The Dr's can tell you every thing but there is nothing like talking to someone who has Been thru it. All the best, Cath278.

Celestia:
Quote from: Cath278 on December 07, 2008, 04:08:06 PM

Just a few tips,
You will need to wear a hat out doors and maybe in doors to. My head was frozen from the hair being shaved!
Sleeping was a bit of a problem for me as I sleep on my right side and I couldn't lay my head down on the wound. It was much too tender for that pressure but I got over it. I can now sleep on it.


With hair, it very much depends on the surgeon. Most will try and shave as little as possible, and many don't shave at all. My surgeon (a number of other forum members also have the same surgeon) doesn't shave hair, but just kind of pulls it to one side and works around it. I always have mine cut just before I go in, because I know I'm not going to be able to do anything with it for a while. That said, I did go and have mine cut again last week as I was getting fed up of not being able to do anything with it (though I warned the hairdresser to be very careful, and not to blow it dry or put anything on it). Normally I have mine short and spiky, but at the moment I can't use my normal gel spray because it stings still (otherwise it's okay though), and generally I can't do a thing with it (my hairdressrer says my hairs kind of in 'shock' with all my health problems, but should be back to normal in a couple of months), but given a choice between misbehaving hair and headaches, I'd go for the misbehaving hair every time. ;)

Sleeping's still a bit of a problem and I can't sleep on that side for very long as it's still a little tender for sleeping, but generally it's not causing me any problems.

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