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 My journey so far - Transverse Sinus Stent

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PostSubject: My journey so far - Transverse Sinus Stent   Fri Dec 27, 2013 9:07 pm

Transverse Sinus Stent

Just getting this out there, as it seems the Transverse Sinus Stent is very uncommon still. If this is the wrong area to put this, I apologize. I just wanted to get it out and put it somewhere for others.

I've had PTC/IIH about two and a half years, one and a half year with treatment and tests.

As far as my meds and LP process has gone..

Original OP of 31 (no meds)
Bit later…
500mg Diamox –   OP: 35
1000mg Diamox – OP: 34
2000mg Diamox – OP: 32
3000mg Diamox – OP: 31

After going through the MRI, MRV, and all tests, I was sent on to the Neurosurgeon to discuss shunt placement. I also stopped taking Diamox and felt much better. I did not use any other form of pain management, just general Ibuprofen. I did try Topamax, but I felt no relief of any kind; so, I stopped taking them. I had a vision field test done, and then another 3 months later. The 2nd test showed severe worsening in both the VF test and the swelling on the nerves. So it was important for me to make a decision on the next step.

Looking at my MRV, the 1st Neuro decided to send me to his colleague to see if I would be a candidate for a Stent. He explained that putting a shunt in to him is like a carpenter putting in a nail, so falling back to that would be no problem.

The 2nd Neuro (most amazing doctor in the world I might add..) looked over my MRV and then after talking with me about the idea of a stent and answering any questions I had, scheduled me for a cerebral angiogram. I was awake for this, and went home the same day. Results showed increased pressure (45 or 50, or so) in my vein. This makes me a candidate for a Stent.

Transverse Sinus Stent
They were able to schedule me about 1 week after my initial cerebral angiogram. They went in again the same way (I was asleep this time) and they used a catheter to guide the stent up into my vein. I actually had thinning and issues with both sides, so he chose the worse of the two. After a few hours I was in recovery and then I had to spend one night in ICU. The stent is MRI safe.

The next day, my pressure headache was gone. I had pain from the stent itself, it was (I believe) 40mm x 5mm in length and width. I had some pain meds, but just for about 2 days. I also had to start taking Plavix (75mg) and Aspirin (325 mg), and will be on that for 3 months. After I am cleared, I will have to take a baby Aspirin (81 mg) daily for life. Not a bad deal, in my opinion.

One month and a few days later, I still have pain from the stent, however I was told my stent is a bit on the large size, and also that 40 or 50, or so, was on the higher side of any pressure he had seen, so it is expected and not of concern. The headache from the stent should dwindle in a few more weeks. He did ok me to take a Motrin. There can be issues with NSAIDs and Plavix, so please don’t take my experience as it being ok to take these together without a doctor’s advice. Tylenol does not take away the pain for me, but Ibuprofen does... so I take it only when really needed.

I had the eye follow-up field test and check on the pressure. The swelling has greatly reduced, the vision field test showed great improvement. My Optic seemed shocked and surprised and asked me what I had done. I told him about the Stent and he was just amazed. I do not need to see him again for 4 months because the improvement was so phenomenal.

As this is a condensed version of a 2.5 year journey with many doctor visits and procedures, if you have questions, I may be able to better a detailed explanation of the part of the journey you are curious about – so please just ask.  Smile
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Mon Dec 30, 2013 3:28 pm

That's amazing..so glad you're feeling better!!!!
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Fri Jan 03, 2014 8:23 pm

Thank you for taking the time to write your story about having the stent put in.  As noted, this does not happen very often, and i often wonder why.  I know that certain perimeters need to be met, so this further reduces the chance of being a candidate for it, but the results, in the literature are really very good.  
I hope that you get to feeling better, that the pain due to the stent goes away soon!
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Mon Jan 06, 2014 3:18 pm

Thank you both very much!

The pain is going away. I have not taken any pain medicine (IBP or Tyn) in a week. It is very manageable and usually simply not there. When I cough I get a twinge, but beyond that.. hardly any pain.

I have also noticed that my disposition has greatly improved. I am a much happier person, even silly at times, and more social. I feel living with the pain of IIH had made m quite cynical and easily annoyed. This is also slowly changing each day, and I feel it is also important enough to mention.
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Tue Jan 07, 2014 6:21 pm

woohoo  woohoo    Fantastic news!
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Wed Jan 08, 2014 9:19 pm

That is great news..congratulations and thanks for posting!!!
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Thu Jun 26, 2014 8:32 pm

Just a quick update, as it has been over 6 months now.

- I have no pain. (Pain from IIH.. I still get normal sinus headaches from the weather)
- I have normal pressure. 
- All of the fluid in my eyes has retracted - my field of vision test was almost perfect. 
- My glasses may now be too strong for me and I need to get a new prescription. 
- I take 1 baby aspirin a day, and in about 6 months I could stop doing that if I choose to.
- I have been through an airport and there were no complications, no bells, no alarms, no issues with the body scan. I just walked through like everyone else.
- I will go to see my Neuro in about a year, just to say hi and check in. I no longer have any appointments or checkups. I am basically done seeing everyone.
- I will see my Optic one more time in about a year, but I think it is more for his curiosity.
- Unless I think about it, I don't even know the stent is there.
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Fri Jun 27, 2014 7:54 pm

That is absolutely FABULOUS news!!  I am so pleased for you and wow how far you've come in that 6 months. I always love for our members to come back and update us, especially with news like this. You've just made my day as I wondered how you were doing since the stent. Great news, really great!! hug  congrats  cheer
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Fri Jun 27, 2014 9:18 pm

:well done I'm so glad the stent is working and you're feeling so much better! Congratulations, and thanks for coming back to share your progress..it's wonderful news!!!!

Wishing you continued wellness and pain free days!
Take care,
Julie
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Sun Nov 16, 2014 4:12 am

I thought I would add onto this thread.  I, too, had transverse sinus stent.  My vein pressures were in the 30's pre-stent and 15 post stent, even on either side of the stent.  Before the stent, pressure above the narrowing of the vein was significantly higher than below.  It took a few months for my headaches to resolve but they eventually did.  I have had the vein pressure checked and they are the same as post op.  Last LP i had OP was 20.  Pleased to hear of your relief, it has been just over a year since I had the stent placed.
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PostSubject: Re: My journey so far - Transverse Sinus Stent   Sun Nov 16, 2014 4:42 am

Dan, I hope that more docs will be looking at stents instead of shunts, the automatic go to surgery.  It seems that for those with the narrowing, it has paid off big time to get the stent put in.  It is reassuring to those considering this type of surgery to hear success stories.
Thank you.
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