Hi, I have recently been diagnosed with transverse sinus stenosis. I seen my neuro yesterday & he has suggested that i have a stent put in to open up the vessel! He also tells me that this will most likely cure the raise in intracranial pressure & papilledema which i have had now for 4 yrs! I believe that this is a fairly new procedure, so i was wondering if there is anyone out there who has had this done, or anyone that can inform me a little more about it. If i dont have it done, my vision is likely to detiriorate, but there is also some high risks associated with the procedure itself apparently.. So any info anyone would be greatly appreciated!
Hi Mary bear I was Diagnosed with Benign intracranial hypertension 3 years ago aswell as bilateral transverse sinus stenosis. I had a stent put in on the right transverse sinus 3 months ago. I was quite nervous knowing the risks and how new the procedure was but everything went well. The procedure took about 4 hours. They will put you to sleep and make a little cut near your groin and guide a long tube all the way up to your transvers sinus and deploy a stent where the stenosis is. When the procedure is over you have to lay flat & still for at least 4 hours. My head was quite sore for a week or so but after that I finally had relief, no woshing sound in my ears and my headaches were gone. About 5-6 weeks after the op the woshing sound came back and so did the headaches. Despite being on blood thinners the stenosis came back. My nurologist said that the procedure did not work. Although there is a 75% chance that is does fix the stenosis. I hope this info helps a bit. All the best with your procedure!!!
I was diagnosed about 4-5 years ago. I see a neurologist at Johns Hopkins Hospital and have my condition monitored through imaging somewhat regularly. I've been told the condition is somewhat rare and uncommon but that it does happen. Hopkins was extremely thorough with the condition. First they made sure I had didn't have an aneurysm causing the stenosis (they did a cerebral angiogram), then they checked the cerebral fluid levels.....I did a spinal tap and saw an ophthalmologist specialist to check the coronal disks. Our course of action is to have it monitored every 6 months and see if any changes occur. I was told the stent was a possibility but that in 90% of patients it fails so my doctor didn't think it was worth the risks. Everyone's case is different of course. I also have a little bit of a dangerous situation as my other transverse sinus is malformed and doesn't have the normal structure and flow as everyone else (probably born with it). The doctors had a panel review my case and decided monitoring was the best course of action. I was told that the body can create new blood vessels (sinuses) to compensate so they are watching to see if that happens. I also decided to make sure that I was in the better shape and that helped with some of the symptoms because there was less cranial pressure. I use to get severe vertigo where I would literally fall flat to the ground when I was standing still, severe migraines, a woshing sound in my left ear etc......I still have some symptoms but they are not as bad after I lost 20 pounds. Its a condition to certainly stay on top of as our risk for strokes increase but bottom line is the best you can do it stay on top of it and don't let it stop you from experiencing anything. Make sure you have a good doctor that stays on top of cerebral vascular diseases! Best of luck!
Thankyou both for your responses! Sorry I havent replied sooner! Im pretty much still in limbo. I see my Opthalmologist next week for a visual field test again, just to make sure there has been no change & Im seeing my neuro next month to decide whether I will go ahead with the procedure. Im still undecided as yet. If my visual field is fine I will probably just continue on the Diamox for as long as I can & just keep on being monitored, but if it is starting to be affected I will most probably go ahead with the op.
Some days I feel pretty much %100, but the majority of the days i have the headaches, ear whooshing, blurred vision, fatigue etc.. you guys know how it goes. So im quite tempted to try the stent in the hope that I will feel normal again. Also, are you guys aware of anything that triggers your headaches etc?? I have noticed for prob the last 6mnths now, that whenether i sit up in bed to watch tv/read etc & my chin is kind of touching my chest, I almost automatically get the whooshing in my ear, the headache, alot of neck pain & my vision blurrs, but as soon as i lay down flat, it slowly subsides. Just curious as to whether its all related or not!
I cant Thankyou both enough for replying, its great to be able to talk to someone who understands. I hope we can keep in touch! Regards Maryanne!
Just wondering if you had your op or not. I had the same symptoms for 3 years and had my stent put in my left side 3 years ago at RPA in Sydney. I have no problems what-so-ever until 1 week ago when I passed out. I am in the process of finding out if it related to my narrowing or not. My only tip is to drink plenty of water and take your asprin. I hadn't taken my asprin for a week and was a little dehydrated and I think this was the cause of my black out. I am actually surfing the net to see if anyone has had the stenting done like me and has ran into problems later on. Hope all is well with you and all the best.
Hi, thanks for your post. I havn't yet had the op. Im waiting to have a consultation with Dr Parker. So hopefully after that, I will go ahead and have it done. Im glad to hear that your stent was a success (except for the passing out). I hope they get to the bottom of it for you. Let me know how you get on. I will keep you posted when I have the op. Take care
I am a 30 y/o F, mother of 3. I also have PTC & stenoses of the transverse venous & sigmoid sinus. Within 3 weeks of visual obscurities in early 2009, I was diagnosed and waited for proper treatment for over 3 months. Within that time I lost total vision in my right eye and most peripheral in my left. I was seen soon after by a specialist, who preformed a bilateral sheath fenestration on both eyes that following day. Without it I would have lost all my vision.
I was still having headaches and major CFS cranial pressures and found that at lower altitudes I did not have them. (so we were moved from Colorado to Hawaii). In March of 2010 I had my first & second (Dr. piggie-backed them to cover the area of narrowing) stent placement in my transverse sinus. It was a quick and painless procedure and it worked within days at getting my CFS pressures down. After the move to Hawaii, we found that the narrowing had moved farther up into the vein. In December 2010, they decided to place another stent. This time they placed a much larger stent just below the previous and it followed all the way down the transverse sinus.
Since then I have shown residual loss in CFS and my visual fields are showing some improvement. I still have optic pain from the bilateral Sheath Fenestration as well as pain in my neck/head still from the stent placement, but very minor compared to the pain I had on a regular basis prior to the surgeries.
I understand your reservations about this procedure...I had them as well. It scared me very much and I didn't know if this would be the final answer. There are a few out there with PTC, but not many with our specific diagnosis. I was surprised to even find this forum today. I was told I was probably the only one.
If you need anymore information you can contact me directly. Look up Dr. Kumpy @ University Hospital, Aurora, Co. He was the Dr in charge of my care and is also the leading Dr in stent placement for worldwide studies and teaching. He trains ALL professionals how to do this exact procedure. The instruments to do the procedure are also named after him. I have his personal email as well.
Thankyou so much for your info. I have had the stent placement done, about 2 weeks ago. Im feeling almost 100%. Im taking Clopidogrel (Plavix) and aspirin daily until my neuro advises me to stop. I see my Opthalmologist in 2 weeks time to see if it has resolved my papilledema. I feel fantastic. No more headaches, noise in ear, blurred vision etc. Im so glad now that I had it done. I too was told that i might get another blockage, but il cross that bridge when/if i get to it, but at the moment Iam just enjoying feeling "normal"again.
I hope that you are feeling well & that your vision continues to improve.
Thankyou once again & I hope to keep in touch.
I have just been diagnosed with BTSS and all the things you and the others are speaking of is exactly what I have been going through for years, when I lost wieght and had regular exercise the symtoms went away or were so mild and far between that I did not notice them but the symtoms have reaccured , I went to the eye Doctor for a regular check up and He is the one who found the issue and called my Family Doctor who then called me in to get checked, then to the Neuro and them to the Hospital for MRI then numerous test but I have not had a Lumbar Puncture and Im sure that's next , I go to an Interventional Radiology appt in about a week and then who know's what. Both sides are narrowed one side is 1 inch long and 50% narrow and the other side is 2 inches long also 50% narrowed .. I am glad to have found this forum because I can not find alot of information about it, I was also told this is very Rare, but I did find something that triggered my couriousity, I wonder if you have or have had a Ventricular Septal Defect ?? I was born with it and at the time of my birth that too was a rare defect. I am 43 yrs old and I was told that my septal defect had closed at age 34 yrs. which was also rare. I hope everything goes well for all of you and I hope to keep in touch so we can share and learn more about this issue .. Thanks
I hope you are still doing well since your OP , I just wanted to touch base with you to see how it's going, I am curious as to how many people have the OP and how many have success with it .. Also Did you use the same Doctor that Silvercrown suggested? if not who was it? I am going to see the Specialist at U of M (michigan) and have no Idea what they are going to suggest, My Neuro prescribed asprin to keep my blood thin but I have not started it yet because they want me to have a blood draw first, did you take asprin and is so what kind was it, my Doctor prescribed something that actually disolves in the intestine rather than the stomache, I wonder if anyone else is on that , it looks like entoric but not sure because its still a script, im having my blood drawn on thursday so I havnt gotten it filled yet. well any way I hope you are doing well, God Bless .. Cindi
I had right trans sin stenosis stented sep 2010. It resolved the high pressure, papilladema, double & blurred vision but everything else remained. I have never had a break from the tinnitus, head aches/pains/sensations, confusion, memory loss, problems with speach & a few other things.
I now have been diagnosed in april with right trans sin stenosis then june re-stenosis in the left side were the 2 stents are. I wasn't offered any other treatment and had no choice but I wish I never got the stents as they are causing me so much trouble now and can't be removed!
Im sorry to hear that you had such a bad expierience with your stenting. Did they tell you what % you were at with your stenosis ? and how old are you? if you dont mind me asking ... I am just curious as i trying to gather all of the informtoin I can get on this diagnosis for myself. I wish you the best of luck for the future and I will be praying for you.I also wonder if you have ever had a Heart Defect called Ventrical Septal Defect, or had you ever taken sleep aides for extended times and do you have Well or City water in your home? also do you consider your diet to be low in fat? and has it been that way for the most part of your life? what Hospital did you have the stents put in ?
I truely hope everything works out for you, I will be praying .. take care and God Bless
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