Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting seconds, pulse synchronous tinnitus (a "wooshing noise" in the ear), and double vision.

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VP shunt Surgery

I have had 9 LP's and had IH for 2 years now. I am at the end of the road and have decided to have the Vp shunt surgery. Very nervous!!!! Any advice. They told me I would be out of work for approx. 4 weeks. From what I have read that sounds like its not going to happen. And....the whole hair thing?? Ughhhhh

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deleted_user
deleted_user

I am possibly 1 week out with June 3rd as a date. Not sure where you are at but my hairdresser said we will go to Sally's(beauty supply store) and pick out real hair clip on extensions when it is done & over. They are more comfortable than the other extensions and you can color them. Plus you can take them out at night so you can rest. Also, as I have long hair, we will donate it to Locks of Love. I think you have to have 11 inches. For me this is the worst part of the surgery so far but far worth it for the possibility of pain relief. Having hope that it just might work for pain relief is enough for me. My Dr told me 1-3 days but got 7 approved from the insurance up front. Good luck & take before and after pics for others that might have to go through this later. Also, there are some ladies on here that I am sure will send you before and pics if you ask.
deleted_user
deleted_user

I had a VP shunt put in Nov 17th 2010. It was the right decision for me, although I was really apprehensive beforehand. My surgeon decided to shave my entire head, except for a small strip above my left ear - it looked ridiculous so I had it shaved off about 2 weeks after the surgery. It was very difficult seeing myself in the mirror, for many weeks afterwards - I knew it was a small price to pay for lasting headache relief...but still, when you're ready to put the whole thing behind you, it's hard to do so when you physically look so different from how you used to. That's how I felt, anyway. Six months on and my hair is looking kind of cute now, although sometimes I catch a glimpse of myself and still think "who is this person??"

From a pain standpoint, I didn't experience much, until about a week after the surgery when I had what felt like a low-pressure headache for a couple of days. Just make sure that the person caring for you has all your drs' phone #s, what to do after-hours, etc, so that you only have to focus on resting. I felt very, very tired for several weeks after the surgery - lots of naps, days spent not doing much except puttering around the house, and still feeling worn out by nighttime. You just have to ride it out.

When you're ready to be among people again (grocery store, library etc), make sure you're able to talk about the surgery - people will stare a little, and will want to know what happened, and it helps to feel confident enough about what you've been through to be able to put it in a positive light. People want to help, but sometimes the "Oh you poor thing!" thing gets a little depressing - better to have them think "Wow you're so strong!" and give you a boost.

I was in hats for a couple of months after the surgery, and eventually really got sick of it and just dealt with people asking "what happened to your hair???" Eventually it became a nonissue, and now it just looks like a normal haircut.

Hope this helps - it really was worth it for me, and the advice on this site has been invaluable. You might want to read through some old threads for other perspectives.

Good luck!!
deleted_user
deleted_user

Thank You all for your advice and words of experience!! Surgery Set for June 2nd. Praying this is the end of the nightmare!! xo
deleted_user
deleted_user

I had a VP shunt put in January. Yes the surgery and recovery sucks, but if it works you will feel a lot better. Make sure you have some strong pain meds at home in case you need them. Talk to your pain management DR to come up with a post surgical plan that is best for you.

Rest a lot and DO NOT try to do anything but rest for at least two weeks. Easier said than done I know.

If you have to get half your head shaved you might as well have fun with it, one word, Mohawk!!! Or you could just wear a scarf or hat, which ever. I cut about 14 inches off of my hair in prep and donated the hair to Locks of Love. When I had enough hair grown back I dyed it purple, it was so much fun!

Take good care of your self and do what your dr says.

A few things I whish I knew ahead of time, bring your own soft warm blanket and fuzzy socks. House slippers are good too. You may want your ipod and bring a box of popsicles (sugarfree is best to avoid stomach upset), they will have a freezer you can put it in. also bring some pudding, yogurt, etc that you like. Most of the times I was awake the cafe was closed. Also bring your own nightgowns, they need a button or zip front. Your nurse can help you change and you will be much more comfy.

Ice your abdominal incision ASAP when you wake up, however use just a few ice cubes and cool water incase you fall asleep with it on you.

Good luck!
deleted_user
deleted_user

I am set for the 3rd. I had a horrible nightmare last night though and couldn't sleep after learning that he still thinks the surgery will be helpful and called to give me the go ahead. You will be in my thoughts & prayers. Can't wait to talk to ya on the flip side of this craziness.
deleted_user
deleted_user

Thanks Emerson!! I dont have a pain doc, still working the night shift at my job. I actually have to work sun and mon and have the surery Thurs. Ughhh..... as for the mohawk tooo funny!! I bet the purple was awesome!!

Texangirl::: Seems like we are on the same road and almost the same date!! I will be thinking of you too. Lets hope this works for the both of us!!

xo Veronica
deleted_user
deleted_user

Heyvern36,
First of all, I hope everything goes well for you and that this surgery provides you some relief! I am curious about your LP's. My young daughter has had 13 LP's already (only to check opening pressures since she is mostly non verbal and can't indicate how she is feeling to us) and I was wondering what your opening pressures were in the last two years, especially now that you have decided to get a shunt. She has another LP next week to check her op and we may discuss a shunt after this if her pressure continues to stay elevated on medication.

Thanks!
Darlyn
deleted_user
deleted_user

I hope your surgery goes well. I have no advice as I haven't had one yet. Just wanted to wish you well and hope your recovery is fast and you get the rest you need!
deleted_user
deleted_user

Hi Darlyn, Sorry your daughter is going through this and you too of course!! My #'s were 42,42,46,65,29,39,34,41,41. As you can see If have kept track lol!! I saw on your profile that your daughter's was 76!! Oh myy that poor girl. I have three daughters and I cant imagine one of them going through this. Keep in touch. Best of luck to you!!
Veronica
deleted_user
deleted_user

It is beyond me why surgeons shave the whole head, I have had 4 shunt surgeries and you have never been able to see where my incision is once I'm able to wash my hair. My surgeon takes the time to part and shave only the needed area. The only one that ever sees where its been shaved is the hairdresser. I asked his assistant once why he was so good about this and she said that he said we go through enough to recover without dealing with self esteem issues along with it. The only time he ever shaves the head is in an emergency situation.

Good luck with your surgery I will pray that you have better luck with the shunt then I have. Mine only seem to last 3-4 months before revision has to be done but when its working it is fantastic.
deleted_user
deleted_user

Oh one more thing I want to add seems like not many talk about this.
You will have some stomach pain from the shunt tubing finding a home. It won't be continuous just some stabbing pains. This to me was much worse then the head pain and I was not told about this before hand so I ended up in the emergency room thinking something was wrong.
deleted_user
deleted_user

Thanks Deb. Good to know!! Veronica
Cath278
Cath278

Veronica, well , first, the best of luck June 2nd! and I will be thinking and praying for you on the day.

I will try to keep this short, ( having a problem with rambling these days!)
1) Stay in hospital as long as they let you. Even if you feel great after, stay.
2) Get a script for pain meds BEFORE you go home.You may not need them but what is worse than needing them at 2.00 in the morning and you dont have any?
3) This is a little bit delicate...get a stool softener. The surgery will mess your insides up and pain meds will constipate you. And, for a few weeks, you wont be able to umm...push. Start taking it before your surgery.
4)Where ever you decide to do your recuperation, have a table with all the stuff you need. It will hurt to get up and down all day. Have your "I need " table ready
Drinks, pain killers and any other meds. A note book, ( to write down when you took any meds as you will be dozy and very tired for a bit), remote control of the TV. Baby wipes, tissues,etc. You get the idea.
5)Be prepared to find a new position for sleeping. You will find sleeping like you did before, a bit difficult. I recommend a lot of pillows to prop you up. I know a few members stayed in their lazy boy chair.
6)I, like many here, found the head site no problem but the abdominal one,very sore.It makes sense when you think of all the cutting that has to be done. This does take a few weeks to heal and sorry, no picking up small children! You could compare the healing to having a C-section.
7)You could experience a lot of abdominal pain. Not every one does, Its the excess csf in the abdomen area, coming from the catheter. The body sees this as a foreign body and will fight it, hence, pain.In time , it settles down and learns to accept it.
8)Try to get a small bit of exercise every day. A small walk around the garden etc. Even if it hurts, a little bit , gradually building up.This is important for so many reasons. Less likely to have a clot, getting back in to shape,keeping your mind healthy, and fresh air!

Dont forget, we are here for you, have been thru it all and live to to tell the tail! Best of luck, Cath.
deleted_user
deleted_user

Thank you Cath!! I'll take every word to heart. It helps soo much to have others advice and experience. I'm taking notes!!
Veronica
deleted_user
deleted_user

My NS told me the reason he shaves the entire head is to try and reduce the chance for infection. I shave my own head before I go in if I know im having a revision done, personal preference, just to get used to it for a while before surgery instead of after. Ive heard a lot of his patients do the same thing.

I also like to bring my own pillow, blanket, slippers and pj's. Crackers, ice cream, etc. If theres anytime for comfort food.. this is it, so bring your favorites. Boredom sits in fast for me, so I take my laptop, music player and books.

Im always surprised with how tired I get for quite a while after, take it slow and easy for as long as you can. I make the mistake of doing to much to soon and pay dearly. Listen to your body, it knows best.

Good luck to you both, I pray this helps and for a easy recovery.