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 Diagnosed March of 1992 with PTC

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Denile
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PostSubject: Diagnosed March of 1992 with PTC   Thu Jun 28, 2012 3:45 am

Hi all, as stated above I was diagnosed early in 1992. I had been getting headaches for a while but one night I awoke to a mind boggling head ache and my world was spinning around. My wife drove me th the ER and was told I had an ear infection given antibiotics and sent home. The following day the pain increased as had the spinning motion feeling and I had blurred vision so off to the ER we went again I knew it was not an ear infection but was told that is what it was and again sent home, this was sunday. On monday my vision was almost gone so we went our Primary care doctor he took one look into my eyes and found the retina's detached called the ambulance and taken across the street to the ICU where I stayed for the next 13 weeks. The initial LP was to high to read and the neurologist drained it to a reading of 350. this wuold help for a few days and they would do another LP to lower the pressure, this lasted for 3 weeks. I was given several medications including Diamox they also reattached the retinas. Though the head aches never went away I was released with pain med and sent home. this lasted about 1 week and the pain got really bad again so back to ICU i went. This time they opted to place an LPS It was an HV valve mounted to the rib cage 6 in cut in lower back a 3 in incision on the R side and another 6+ in cut on my upper abdomen. It was replaced the following day as it failed aqnd over the next 5 weeks replaced a few times to adjust the pressure. I was released and went home. For the next 21 years the headaches never went away, Ive run the pain med game from codeine and now to Fentanyl and Morphine sulfate for pain, I also take clonazepam and lorazepam for PTSD (veitnam). Recently in early 2012 the headaches have returned with a vengence, I just went through a shunt study and they are going to put in another one though I do not know which type yet. The procedures have changed alot over the years as none of the techs or doctors had seen a shunt like this and are not sure what to do with it. Much like many of you I have to many floaters to count and am dealing with cataracts and now gloucoma. Thanks to a complete military disability I have no cost to cover. I aslo am a insulin dependant diabetic and have a gastro intestional stromal tumor that will soon be cut out of the stomach. I look forward to the possability of not having continious head and eye pain. Sorry about the long story but its been a long haul and now look forward to the end of the pain one way or another. Not to be taken wrong as im not suicidal. Thanks for listening to a 55 plus old man ramble


Last edited by Denile on Thu Jun 28, 2012 5:49 am; edited 1 time in total
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Wylee
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PostSubject: Re: Diagnosed March of 1992 with PTC   Thu Jun 28, 2012 4:46 am

Wow. That is an amazing life story, Denile.

First of all, Welcome3 and thank you for your service.

You are in good company here. We have not had near the troubles that you have, but can understand all too well what you are going through. I cannot, however, imagine having to stay in the hospital for weeks and weeks at a time. That must have been awful. I so hope this next time will be a much shorter stay. How soon do they plan on putting in the shunt? Will it be a vp or another lp shunt? I have a lp shunt with a programmable and antisyphon valve on it. Had been working well until recently (made it almost 8 months).

So, you live in Oregon. Do you have webbed feet? Sorry, I couldn't resist. You know how us Californians are (I lived in Cali for 22 years).

Looking forward to hearing more from you. I hope you will join us often.


Last edited by Wylee on Thu Jun 28, 2012 5:00 am; edited 1 time in total
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Denile
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PostSubject: Re: Diagnosed March of 1992 with PTC   Thu Jun 28, 2012 4:55 am

They are talking about a programable LPS. Nope, no webbed feet here just a little rust. Actually kidding as I live on the high desert we get about 4ft to 6ft of snow but very little precious rain. The long hospital stay was OK as my wife Debra informed me it was really hot. I grew up in california, Pismo Beach to be exact; I have not been back after leaving in the early 70's.
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Heidi
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PostSubject: Re: Diagnosed March of 1992 with PTC   Thu Jun 28, 2012 3:58 pm

A very warm welcome to our group, and your story is absolutely incredible. You have been through so much, and your tenacity and strength shine incredibly bright throughout your story. Iam so pleased that you found us and chose to join us, and I hope that you find a home with us here.

How did you find the LPS, did it affect your mobility at all? I was unlucky with all 3 of mine, as they've permanently damaged my sciatic nerve and surrounding nerves. They did try a VP shunt and an LP shunt together but the LP shunt just made my mobility worse, so it was removed. I now have a VP shunt and bilateral sub temoral decompressions which together have finally succeeded to leave me symptom free and stable after 24 years.

I really hope they find a solution for you, and that the constant pain will finally be at an end. My fingers are crossed for you that this will all happen in the near future. I look forward to getting to know you better and to seeing a successful outcome for you.

Heidi hug

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PostSubject: Re: Diagnosed March of 1992 with PTC   Thu Jun 28, 2012 6:11 pm

Dear Denile;
have they also diagnosed your obstructive sleep apnea? (OSA)
OSA is associated with IIH and papilledema. it is also associated with PTSD. and with metabolic syndrome which is the precursor to diabetes.
see these references:
http://www.acnr.co.uk/pdfs/Case%20reports/PapAJLcasestudy.pdf
http://www.ncbi.nlm.nih.gov/pubmed?term=idiopathic%20intracranial%20hypertension%20risk%20factors%20men%20osa
http://www.ncbi.nlm.nih.gov/pubmed/2914475
http://www.ncbi.nlm.nih.gov/pubmed/12524572
http://www.ncbi.nlm.nih.gov/pubmed/22320933
http://www.ncbi.nlm.nih.gov/pubmed/22171909

if you have not already been diagnosed with OSA, please ask for a sleep study.
if you have, and are on CPAP but are still having all these problems, I would recommend asking for a BiPAP machine.

I found that trying to exhale against the high CPAP pressure caused a Valsalva which increased my intracranial pressure and made me very sick. After my diagnosis of OSA I struggled because I did not tolerate CPAP. I had a diagnosis of OSA with severe disabling brain fog as well as migraines, for a year and a half before my neurologist even mentioned the relationship to intracranial pressure. most doctors do not connect the dots here, it is not well understood. even the docs at Stanford do not understand this relationship or the relationship of CPAP to ICP.

print out these references and take them to your doctors, if you need to, in order to get taken care of. it is well known in medicine that 90% of cases of OSA go undiagnosed. It is just not on anyone's radar, although it should be the first thing they think of. ALL of your health problems could be due to this one issue.
good luck,
Deb
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Denile
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PostSubject: Re: Diagnosed March of 1992 with PTC   Thu Jun 28, 2012 8:05 pm

I did not connect sleep apnea to the PTC and neither did my doctors, I also tried CPAP and had a misserable time with it, just could not tolorate it. I now use a programable BiPAP and find it a much better alternative, It memorizes my breathing pattern and self adjusts, their is very little back pressure during exhale and when I fail to breath it does it for me, you do have to wear a full nose and mouth mask. Talk to your PCP about a BiPAP they are so much better. I do not have OSA but instead I simply forget to breath it is type 3 apnea. Hi Heidi, I do have mobility and sensery loss in my legs but thats where I was shot ( L knee and R thigh ). This has gotten worse through the years but I always blamed it on the bullet damage. I have lost feeling in
my feet over the last 3 years but aslo did not connect this to the LPS I will talk to me doctor about the possability. My VA hospital has little knowledge on PTC and is know researching it to see what is next for me, they had only heard of it. They are also trying to find out about the shunt as it is a bit unusual, all I can remember is it was made in France and includes a 1in insert in the spinal tube that appears to be permantly attached also over the years the tubing has become kinked and runs all over the place. It is nice to know that there is the possability of becomming head ache free. This last week is the first time I have seen it in the Xrays it sure is a strangf looking contraption.
Thank all for the info and I will refer my doctors to this site.
Robert
Do any of you suffer from confussion and memory loss.
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Sophiasmom
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PostSubject: Re: Diagnosed March of 1992 with PTC   Thu Jun 28, 2012 9:45 pm

hi Denile;
yes, I am on a BiPAP also, and I am beginning to think it is the only PAP option for those of us with IIH. I'm glad you got on one too.
I do have mild confusion and memory issues, but I don't know if it's the IIH or the OSA!
Deb
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medmisfit
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PostSubject: Re: Diagnosed March of 1992 with PTC   Fri Jun 29, 2012 3:13 am

Hi Denile, welcome to the group. I can't imagine all you've endured..you're a true inspiration & I'm so glad you found us! Since you're in Oregon, I wonder if the Intracranial Hypertension Research Foundation would be willing to work with the VA? I know they have a physicians section, so it may be a good place to start regardless. You can find them at www.ihrfoundation.org.

I hope you find relief soon!
Take care & keep us posted,
Julie
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