Pseudotumor Cerebri Support Group

Hi Brooke,

Boy you sure come up with good ones. I have never heard of that (please remember I am not a doctor) but my NS did say that running catheters under your skin can be tricky. He told me that if they are not careful they can end up in the wrong places. I am curious if this might have happened to you and the catheter is too close or even in to your abdominal muscle area rather than wear it should be. Or maybe they just iritated that area enough that is now allowing something to herniate your abdominal wall. What was the 3rd revision for? Was it to redo that end of the catheter? Did he xray to confirm placement?

That is a new one for me. Anyone else hear of this?

TJ
IHRF Ambassador

Hi Brooke,
On another support site I read one person who said she got a hernia after her VP shunt and thought it was from the end of the tubing free floating and poking her in her abd. She said she had a hernia repair and they stitched down the tube and she is fine now.
I had groin pain, along with pain going midway down the front of my leg, but that was due to sciatic from, I think, the nerve from L2-L3. Sorry I couldn't be more help but I'm sure others can help you. Hope you feel better soon! Jazzy

Thanks Jazzy and TJ.

TJ- the 3rd revision was because the catheder in my lumbar came out a lil and cause csf leakage into my muscles. They haven't messed with my stomach since the first surgery on Jan 26th. Though this last surgery they did add a ft of tubing back in the back. Ya I think i'm working on figuring out any and all errors that could go wrong except (knock on some wood) I haven't had not one headache in weeks. Oh and I have had an xray and placement is right on that end...unless it has moved because from my understanding that end is pretty much just dropped into the cavity. Jazzy- what other support site do u go on?

Brooke,

Glad to hear you have been headache free. I remember the leak from before. I was thinking you had already had that fixed. Sounds like you should be in pretty good shape unless your abdominal pain doesn't go away and you end up with a hernia operation. Are you getting tired of being operated on yet? You have had a tough road but sure sound like you have not let it get you down.

Keep up the positive vibes.

TJ

O I'm passed sick of surgeries. My dr today told me that i'm doing pretty good for all that i've been through and I think alot of it has been because of i've been postive. You know God works in mysterious ways. I'll tell you a short version of my health prob timeline mixed with a blessing in disguise with my personal life.

11.29.08-had my 1st LP and dx w/ptc. by 12.29.08 I was put on short term disability at wk. When I was recovering from my 3rd LP on Jan 10th I came into contact with a guy from high school and spent hrs talking to him and I finally got to meet up with him after my pre op appt for my 1st surgery. I spent the entire weekend with him b4 my 1st surgery...it was awesome I knew b4 I even met up with him that I was going to marry him because of our connection already. Well he took care of me after both of my surgeries that way I didn't have to go 2 hrs away after surgery so my dad could take care of me. He wanted to so he could be with me. Well I'll leave all the lil details out but we got married on March 13th. I know its a short amt of time but we just know it was right and to fall in love in these conditions I just knew he was the one. I dunno why i'm telling you all this but God gave me him at that time I think to help me out. Honestly and i'm sure none of yall would blame me but w/o him coming into my life I would've been so depressed going through this alone and scared for my future. (of coarse I have a very supportive family too but nothing is like falling in love and getting married to your soulmate) I dunno kinda crazy but i'm now happily married and my poor husband had tears in his eyes when my NS said we had to have a 3rd surgery. Oh it does kinda suck though because thanks to having surgery 6 days after getting married it kinda ruins the whole honeymooning period. :) But we have the rest of our lives so its ok.

Brooke,
that is so cool how you met your husband again, and in those 3 months he is more than proven his love.

When they stick it out through the toughest times, you know they are in it for the long haul.

Charlotte

GOOD NEWS!!! NO hernia...but I do have a cyst on my ovary that ruptured. I gotta go 2 my gyno next week to follow up since I just went to the ER but hopefully this isn't related to PTC. From reading about cysts on your ovaries I think the only way it could be related is my thyroid. I know my NS said my thyroid was swallen and it could be related to the PTC and from what I read you can get cysts if something is wrong with your thyroid. I haven't had any blood work done to determine for sure my thyroid levels it was just determined by the touch of my drs hands that it was swallen. So who knows...now this is just me trying to figure out why out of all times in my life I had to get a cyst on my ovaries and it just had 2 rupture. lol boy I have bad luck.

Has anyone ever heard of a link between cysts and ptc?

Charlotte-yes my husband is def. in it for the long haul if he's willing to put up with me and all the ptc probs. He's very loving and supportive.

Brooke,
PTC can sometimes be relate to polycystic ovarian syndrome, its the hormonal connection. Tell your doc about both if you want I can email you some of the info, I took it in to my doc when we started trying for baby #2... She was more than willing to work with me because its not their specialty.

Hope there was no damage to the ovary since I know you wanted to try to have a family.
Charlotte

Thanks Charlotte. I have appt with my gyno on Monday and I'm going to mention the polycystic ovarian syndrome relation to PTC. Since reading your post I have researched it and i've found quite a bit of info. But I'm hoping and praying that it was just a ovarian cyst and not the PCOS. I got enough problems with my health I don't need to add one more syndrome with the high risk of infertility. But thanks for the info I'm def. going to bring it up to my gyno.

Brooke:

It is so interesting that you have brought up the information about the ovarian cyst and swollen thyroid. Prior to my diagnosis I have had bouts with ovarian cysts, I started having sleeping problems, irregular periods, hot flashes, night sweats, sensitivity to cold and yes was told several times by my Dr. that to the touch my thyroid was swollen. I was also told that I was too young for menopause and my thyroid/hormone test came back normal. My ANA blood test came back with high numbers however indicating that I had inflammation somewhere in my body...No Sh--! Yet, I was chronically fatigued and obviously gaining weight. I've read this from many other PTC women. Which leads me to question: Which came first....the chicken or the egg? Are we just overweight women who got PTC from the weight gain? Or do we have some other thyroid/hormonal disorder causing weight gain and PTC??? Does any of this sound familiar to any of you???

Interested to hear your input.

-MM3