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 shunt finally scheduled

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PostSubject: shunt finally scheduled   Sat Apr 06, 2013 4:45 am

My shunt is FINALLY scheduled for May 22nd. Im ready for it mentally, im worried about how I should feel after? I have the VP shunt, for those of you who have had his do they shave a lot of your hair? Did the cut on the abdomen heal fast? I was suprised they said i could need more then 2 weeks off, the surgeon seemed to answer most of my questions but i wanted to see how you all felt.... always makes me feel a little better : ) I will feel more prepared knowing how the healing went for others with this.
He did tell me (again) that its a 50/50 chance it will take away the pain and it might not even help the whooshing, I am doing it because nothing else has helped, i need this to help... even a little bit will make it worth it. Its just hard knowing it might not help... I feel like it has too.. fluids the problem, removing the fluid seems like it would solve it.. arrg
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PostSubject: Re: shunt finally scheduled   Mon Apr 08, 2013 2:13 pm

My surgeon didn't actually shave any of my hair because he didn't think it necessary to do so, but I know there are surgeons who do and it varies amongst them how much they shave. You could ask your surgeon to keep it to a minimum,or to at least give you an indication of how much he will shave in order to prepare you.
The healing time is surprisingly quick, you will feel tender for a week or so but the wound tends to heal within 2 weeks, as does the head wound. You may have a low pressure headache afterwards but not everyone does.
I did feel the relief almost straight away, I only have the whooshing when the weather is terrible, otherwise I've been left with the ringing tinnitus now. I don't have the typical IIH headaches anymore but I do suffer with Barometeric headaches which IIH'ers seem to be more sensitive to.
Hopefully the shunt will bring you the same relief it has me, and you can begin to enjoy life again free of pain. I will be keeping my fingers crossed for you when your surgery comes around.
hug xx
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PostSubject: Re: shunt finally scheduled   Sat May 18, 2013 2:48 am

Time is getting close. How are you doing??
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PostSubject: Re: shunt finally scheduled   Sun May 19, 2013 1:06 am

heeyy! I had my shunt out in on the 6th Smile so almost 2 weeks now, I was all messed up with the dates I seem to have twenty different appointments a week these days ha ha. But all went well, im feeling pretty good except ive been having sharp tummy pains. Has anyone else experienced this after the VP shunt? Its not constant just random sharp pains and its not always on the right where the tubing is, I havent been able to eat as much as I normally would im afraid it will make it worse. I have a follow up appt next week so im hoping to hold out until then to bring it up to the surgeon... I hope this is normal!! I havent had much head pain, today was a sad stressful day I had to bring my Grams to the airport ( she was here for my surgery and stayed with me after Smile) I always hate saying goodbye to her :( so my heads hurting a bit now. I can be a baby when it comes to my Grams leaving me! thank you all for your support in all of this! Its always so nice to know there are others out there who know how I feel!!!
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PostSubject: Re: shunt finally scheduled   Sun May 19, 2013 6:01 am

I thought I had seen that you had the shunt surgery already. Thought maybe I had missed something and you were doing something else?? My memory isn't so good either :roll:
It's funny how aware we become of our body's after surgery. Now, if we can just keep that close association maybe we can nip things in the bud in the future!
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PostSubject: Re: shunt finally scheduled   Tue May 21, 2013 5:47 pm

I'm so glad things went well! Definitely keep a list of questions for the doctor. I was having sharp pains after last surgery and found it was my connective tissue. Apparently it got knotted up with all the twisting and turning they do to you, so I have regular massages to keep it under control. Some pain is usual, especially if it's only been a couple weeks..can be awful gas from some procedures, so you may just need to move around a little more. There are concerns with bowel obstruction and different issues with catheter placement, so be sure to let doctor know right away if any major pain or changes.

Wishing you a speedy recovery and much needed relief!!!
Julie
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PostSubject: Re: shunt finally scheduled   Wed May 22, 2013 5:20 pm

thanks Julie!! I have been reading some old posts, when you have a VP shunt and its not doing enough is that why they would also do an LP shunt? I think mines ok!! hasnt been long enough to tell too much but I was just curious how that works! my neuro never brought the LP shunt up but ive noticed some people have both or have tried the lp first seems like.
I do feel like my head pain is getting better, the whooshing is there but it goes away!! that in itself is amazing it was constant all day all night horrible whoosing!I have had two days of feeling the same headaches and already im worring that its not working right!! I will just have to learn to trust this little thing in my body that its doing its job Smile Also going back to work next week, Im excited to get back to normal but im nervous because everyone thinks I just got my problem fixed, and im not yet able to say 100 % that its just fixed, I dont think it ever can be with this. People dont understand that part. Its better for sure though Smile I am so glad I did it!!
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PostSubject: Re: shunt finally scheduled   Thu May 23, 2013 7:03 pm

That's great news..just try to take things one day at a time! Maybe a half day or something to start, so you don't push yourself too much? You may need to build some stamina, so be patient with yourself.

If your symptoms are improving, then the shunt is probably working. The main function is to save your vision, but hopefully other symptoms will improve as your body adjusts to new levels. There are some people that need meds or additional shunt because one shunt isn't able to keep up with the fluid, but they seem to be pretty rare. I think VP shunts are used more now, but when I got my shunt they were still fairly experimental and not recommended for IIH. Some doctors seem to have philosophy that starting with LP leaves you more treatments to try if needed down the line, but they can cause other problems. It seems to depend a lot on the person's physiology and doctor's preference. Shunts are definitely not a cure, but hopefully you'll feel better and vision will stablize. You'll still have limitations, but you'll learn when to rest and when to push. You can definitely live a "normal" life with some slight modifications.

Good luck with work!!!
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Julie
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PostSubject: Re: shunt finally scheduled   Fri May 24, 2013 7:27 pm

Had my post op yesterday, they think all is well. Since surgery my chin and neck have been numb, he has no idea why. He said that shouldnt have happened and hopefully the feeling comes back, it doesnt really bother me but its weird! Three weeks monday and its still as numb as it was! Better to be numb I guess then have pain.
I can see now how the shunt isnt a cure, but for sure is helping. I dont feel cured yet everyone seems to think I should be! Im glad for the help and so happy I did this I dont mean to seem like im not, I just wish others would understand that it doesnt magically go away. It does feel like the fog in my eyes is gone which is amazing! and the whoshing is mostly gone... I hope for good but I still dont feel great, its hard for me to take the time to rest and not feel guilty. I just feel like some people dont get it :(
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PostSubject: Re: shunt finally scheduled   Fri May 24, 2013 8:46 pm

Glad to hear the check up went well. It will be interesting to see what happens with the numbness. I suppose that if the cranial nerves were injured they are slow to recover, so it could take a while. As you said, far better to have it be numb than feeling intense pain!!

Yes, the shunt is not a miracle cure, and yes, people often don't understand that part. It's that invisible illness thing kicking in........."but you don't look sick." Do what you can to help these folks understand, but, sometimes we just have to let them be. After all, it is their problem, in their head, not yours. You have enough to deal with without having to concentrate of their issues too. Print out the "Spoons THeory" and the "But you don't look sick." Have copies available to those who really care and want to learn.
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PostSubject: Re: shunt finally scheduled   Sat May 25, 2013 4:22 pm

So glad vyou're feeling the benefits and hopefully that will continue. I know when I had my LP shunt I had something similar, all the left side of my face was affected, and it still is numb in places. I was just told at the time it was a side effect of the shunt but they never explained why. Are they going to explore the reason for the numbness and what have they said about recovery from it? I hope that they resolve this for you and give you some answers.
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PostSubject: Re: shunt finally scheduled   Sun May 26, 2013 7:10 pm

No the NS seemed like he really didnt know why it was numb, just that it will hopefully go away. He spent like three minutes in the room with us :( He also thought the belly pains were normal for only 3 weeks out. The incision on my stomach doesnt really hurt its more lower right where I get stabbing feelings but they do seem to be happening less often.
Woke up today with left sided pain in my head like before, when i bend down or move my head the whooshings back my eyes feel blurry again today too.. Bleh.... I wont see NS again until august, and he said he wont adjust the setting again until august either, set at 1.5 now but today I dont feel like its working.
Guess ill just be waiting it out and hoping for more better days to come. Wondering how long to wait before I start complaining? I dont know whats normal for these things.
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PostSubject: Re: shunt finally scheduled   Tue May 28, 2013 9:51 pm

There really is no normal. If it doesn't get better or starts to get worse, notify your surgeon. It definitely takes time for everything to heal, so try not to worry unless vision is affected and symptoms start to return. ICP can be affected by weather, allergies, and all kinds of things..just monitor your symptoms and contact surgeon if they become bothersome. Sometimes your body adjusts to certain level and you need a little tweak..that's why the symptom logs are helpful.

Good luck!!!
Julie
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PostSubject: Re: shunt finally scheduled   Wed May 29, 2013 12:29 am

thanks Julie, I started a log again yesterday so I can just show them instead of trying to explain it over and over again to the docs. The NS did warn me that the shunt may not resolve my headaches, I was really just hoping that it would. Keeping fingers crossed for better days. today was slighlty better... no energy. back to work tomorrow... im not ready BLEH, when you feel like this it just seems like torture to be at work.
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PostSubject: Re: shunt finally scheduled   Wed May 29, 2013 12:40 am

You're still getting used to the shunt, so it may be just a matter of time. I couldn't handle the low pressure when I first got mine and had them adjust the valve up for me. We slowly brought the pressure down, taking over a year, and that was much better. Hang in there/

I'm fingers crossed
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PostSubject: Re: shunt finally scheduled   Wed May 29, 2013 12:50 am

Your surgeon certainly knows how to fill you with confidence and pep you up. :(
The whole point of the shunt is to relieve you from your headaches and symptoms. I appreciate that the settings on the valve are trial and error because there is really no determined one for IIH.
As you're continuing to have these stabbing pains in your abdoment, I'm surprised your Neurosurgeon hasn't sent you for any scans to check it out. If they don't resolve ask him to investigate it, as it's not realistic for you to continue with it. If they haven't dissipated insist on him doing a full check up.
Keeping a log is a good idea, and I would also invest in a digital barometer so you can take not of the changing barometric pressure, and the effect it has on your head. We seem to be more sensitive to the Barometric Migraines, which I suspect is down to our ICP.
Take it one step at a time at work, and give them as much info as you can on your surgery, so that they can appreciate the impact it is making in terms of your capabilities at the moment. I was lucky that the National Health System that I worked for had what they call and ease in period, where you start off going back to work for a few hours or days at a time.
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PostSubject: Re: shunt finally scheduled   Sat Jun 01, 2013 5:45 pm

no he doesnt seem to want to put lmy mind at ease. I finally called them wed, told them I feel the same as before my shunt again. Ive been exausted, neck hurts, ear whooshing is becoming worse. The NS'a PA called and said if it gets worse to come to ER... but they were sorry the shunt didnt help more yet, they still wont change the setting until aug, or what if its broken already? I feel Like S$IT... I made an appt with my neurologist here in town but their first appt was the 10th... and he usually wants me to deal with them when it comes to things they put in... meanwhile my PCP is lowering all my pain meds excited on getting me off them and I dont feel any better! I know I need to give it time, Hopefully it will work better once they start messing with it, or I get used to it but meanwhile im going to explode. In the morning especially im so disorented..
Im sad that I still feel like this, and sad that its a waiting game just like before. wish I had better news for everone, and especially work and family but truth is i feel like crap still.
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PostSubject: Re: shunt finally scheduled   Sat Jun 01, 2013 11:16 pm

Ugh. Can you get the meds doc to slow up on the withdrawing meds? Maybe if you explain that you aren't feeling well they will let you stay on the meds a bit longer or let the withdrawl be slower and more gradual.
I would think though at 3 weeks post surgery you should be feeling better by now. August is such a long way off, especially if the issue is shunt FAILURE and not just the setting.
Keeping fingers crossed
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