Some_{thing wrong with my shunt}


Since I had my shunt put in this past July I had been doing great until 3 weeks ago when I started getting headaches again. The past few days have been unbearable and the (2mg) dilaudid doesn't help a bit. I saw the neurosurgeon this past week and they said they my have to tap my shunt to get it moving again but that they could see that it was working but that it may be blocked somewhere so they sent me for a CT scan. I go back on Monday to see if they are going to tap the shunt or not. Just not sure what to do because the pain is so bad today I can hardly see straight and hurts to move or touch my head. I know the ER near my house won't do anything and the ER that my neurosurgeon is associated with is over 3 hours away. Feeling really bad right now. :(

Melody

Oh Melody I feel for you , if lying down or taking pain relief isn't working try giving your neuro a ring to see what he suggests you can do till you can see him, ask him about whether your pain relief can be increased till you're seen,or if he can phone your ER ahead for you and tell them about you.

I've had a blocked shunt in the past myself so I know how unbearable the pain can be, and my only relief was a lumbar puncture and a shunt revision. Please don't let it get any worse or tolerate it any longer than you have to. Keep us updated.

Heidi

Hey Melody

You poor thing I know exactly how you are feeling. I had my shunt inserted in April, and within about 3 weeks my headaches came back and like yours they were unbearable. The neurosurgeon ordered scans and X-Rays to see if the shunt was broken. They couldn't detect any breaks so they did a lumbar puncture and my pressure was off the charts, which was their way of diagnosing that my shunt was blocked.

You didn't say whether your shunt was an LP or a VP but either way the pain is completely unbearable and honey you have all the love and hugs in the world from me, I just wish that could actually make you feel better. My headaches were so bad, like yours, so I went to the emergency room where they admitted me and booked me in for shunt revision surgery, which they did in June/July time. They had me on Oxynorm, oxycontin, morphine and some other pain killers but nothing really takes the pain away properly does it? x

Heidi as always gave brilliant advice, if you are medically unwell the ER should try to accomodate that fact and try help. I hope you have some luck, and like Heidi said, keep us all updated.

This may sound a bit strange, but one method I was given to control my high pressure headaches was to drink a lot of coffee or high caffeine drinks like Cola. My neurosurgeon said that coffee, or caffeine in particular acts as a diuretic which makes us need to go to the toilet more and is very useful in helping to get rid of some of the fluid around the brain building up and causing pressure. I didn't believe it myself but I tried it and it works a treat.

Thoughts and wishes are with you, let us know what develops.

Stay strong xoxox

Saw the neurosurgeon on Monday. He is setting me up for a shunt o gram and in the meanwhile I am suffering with a really bad headache that just won't go away. I haven't been able to sleep well for the past three nights and am vomiting every day. I feel as though the neurosurgeons office is taking this very serious. The lady that does the scheduling told me she was going to call me on Tuesday with the date and of course tomorrow is Thursday and I haven't heard anything yet. So tomorrow I will be making a call to them to find out what is going on. The surgeon did say to me that he thought the shunt was malfunctioning but is doing the shunt o gram to prove it and if it truly is malfunctioning then another surgery is in order. I feel as though I am getting the run a round. I feel like crying and to beat all I found out that I have tendonitis in my right arm/elbow and I am in physical therapy for that. Just having a rough time

:(

Melody

I meant i didn't think they were taking in very serious. Plus for the past two nights my eyes have been hurting and things are getting fuzzy when they are hurting. Not sure if I should call the neuro ophthalmologist or not to get him to check my eyes. very tired of seeing doctors.

Melody

Melody I'm so sorry you are having to go through all this and I know how frustrated and upset you must feel about it all. The fact you are in such pain and vomiting is a cause for concern and you must stress this to them, and ask them what they suggest you do in the meantime. It might be that you need to go to ER, because you can't continue like this. We are all here for you and please keep us updated. Stay strong and we'll help you get through this. As you're vomiting make sure you drink plenty of fluids, because if you're taking a diuretic there is a chance you could become dehydrated.

Heidi xx

Melody, I would just make sure you're keeping neuro informed. If vision has become an issue, you can ask neuro or call neuro-ophthalmologist to see if they need to see you..they may be able to push surgeon, if vision is in jeopardy. It is definitely a difficult and frustrating process..vision is the main concern so I'd use it to your advantage. I've had a couple of shunt revisions myself, so I completely understand..hang in there!!!

I had my shunt o gram today and tomorrow I go back for the rest of the pictures. They said my surgeon was combining a shunt o gram with a cisternogram to see if my shunt was clogged. The surgeon told my husband that the shunt itself was working fine but that he suspected that it was clogged but that if it wasn't they would just open the flow of the shunt in the office since I have a programmable shunt.

Can anyone tell me what is involved in a shunt revision or what they would do to unclog a clogged shunt. My followup appointment isn't until November 28 and my eyes hurt real bad the headaches come and go but the pain in my eyes stay all the time. I'm thinking I should call they eye doctor now or talk with the surgeon tomorrow about what to do before anything gets worse.

Melody

A shunt revision is when they replace your shunt or part of your shunt depending on where there is a blockage. The shuntogram will have determined where that is if there is one, and then your surgeon will be able to tell you what they intend to do. I can't say for definite that in your case he will need to surgically correct it, but that's what usually happens when there is a blockage. If your symptoms do get worse and you notice a change with your vision contact your Doctor. If you think you definitely need to contact your Doctor now, then you are right to do so before things get worse than they are.

Keep us updated.

Heidi

Ok everyone I finished the shunt o gram and the cisternogram and they have concluded that my shunt is not working I see the neurosurgeon on Monday to determine what to do. But tonight I have developed lower abdominal pain and I'm not sure what to do now. Should I wait it out till Monday or go to the ER.

Thanks

Melody

I would go an get it checked out in the ER, it could be an infection or your shunt could have come loose. I wouldn't advise waiting but to go as soon as you can and please keep us updated. We'll be thinking of you.

Heidi

Hope all is starting to go in the right direction by now Melody. I understand frustration with ERs.

Laurie

I had my shunt tapped again today to get fluid out to check for infection. The neurosurgeon also did a cat scan of my abdomen to check for infection that came of negative. He also reset my shunt down to 11 from 13. He doesn't think that will help because of the blockage that showed up on the shuntogram, but he wanted to at least try since we have to wait two weeks for the results of the shunt tap today. Now we are waiting for the results of the spinal fluid test to come back so he can decide what surgery to do. If there is infection the doc said he will have to take out the shunt completely and let me heal from the infection and then another surgery to put the shunt back in. The other is if there is no infection they will do a shunt revision surgery. The down side is that all this has possible pushed my surgery until around Christmas because my surgeon is so backed up on surgeries.

Thanks everyone for your support it means a lot to have people to talk to so I don't feel so alone.

Melody

Melody I know you'll be frustrated and quite low with all this ,but it seems you're in very good hands and they have it all in hand. I've been through this type of thing a few times. Hopefully they will deal with this as soon as possible, especially if there is an infection. Don't be afraid to question your surgeon and doctors, because the more informed you are, the less stressful and worrying it will be.

We are all here praying and keeping our fingers crossed for you. Hug

Heidi xx