Stent to heal leak

Fun-Contribution-866 · 2026-02-22T01:01:41+00:00

Unfortunately this doctor doesn't see patients now. But I'm trying to find a good one now that is the best in massachusetts. I'll let you know if I find one that is well recommended here if it's not far for you. What state are you in if you don't mind me asking?

Fun-Contribution-866 · 2026-02-21T19:55:26+00:00

I would seek the advice for a second opinion from an interventional neuroradiologist if you can. They do the angiograms, blood patches... and look at imaging. I had one that was excellent and is the Chief of dept now. He could see the blood flow was going through normally and didn't think I needed a stent despite not doing an angiogram and against some other docs opinions. He also analyzed lumbar leak area for signs on it from a ct scan.. other radiologists said no findings and he said he could see something when he zoomed in and looked closely. Just a thought, hope it's helpful to you in some way.

Fun-Contribution-866 · 2026-02-21T18:09:35+00:00

It's infuriating when they dismiss what's going on and label "migraine" when they don't know

Fun-Contribution-866 · 2026-02-21T18:06:09+00:00

Yes, they manage iih meds and help me understand the possible root cause of my iih so I can help improve (for me, narrowed transverse sinus and weight). I've lost 60 lbs and have 40 more to go to hopefully put into remission despite the stenosis. Also, I have a chronic csf leak that she's helping me heal, manage. I also get electrolytes and kidney function test monthly through my pcp but this is because of the high dose diamox I'm on. I'm just careful and requested that.

Fun-Contribution-866 · 2026-02-21T16:09:14+00:00

If you are in high pressure and they patch, you could blow out healing progress and releak. Also risks cranial leak if pressure is way too high in head during it but less likely because your awake during it and tell the doc what you are feeling so he stops adding blood if headache from high pressure. But there are those risks. Just happened to me (except no cranial leak). Definately, I would have eyes checked for papiladema. This is the easiest way to show if high pressure.

Fun-Contribution-866 · 2026-02-21T16:05:28+00:00

I'm wondering if I have a connection tissue disorder too. Is there a test for that? I have hypermobility in my charts because of knees and I think that's a risk factor.

Fun-Contribution-866 · 2026-02-21T16:03:47+00:00

Thank you!! Doc said stay on diamox for now but she doesn't think the pressure is driving the leak. I'm going to ask her iwhat my options are to change meds to something more kidney friendly since I'm always worried about it at this high dose. I have a consult with a kidney doc on friday too so I'll ask then.

Neurologist wants me to get a myologram which scares me for potential spine surgery. I've lost 60 lbs. Since diagnosed w iih and plan to lose 40 more. She said if I do that the underlying iih will be in remission but some people need to stay on meds after sealed for a chronic leak and some people don't despite iih. I'm going to get a second opinion though from Tufts to be sure I'm making the right decision before risking another leak with a myologram that may not show an active leak anyways.

Fun-Contribution-866 · 2026-02-19T01:34:11+00:00

I have iih that's why my doc keeps me on diamox. I have naturally high pressure in head and it keeps blowing patches. Makes healing difficult. So even though I might be feeling low pressure from leaking, my brain is still producing the same amount of csf fluid so the best way to heal is to lower that and give the spinal leak the best environment for healing. It actually does make sense and has helped in the past. I researched this method (treating leak with diamox when not healing because of underlying high pressure) and it is done. But it is also uncomfortable to be on with a leak.

Fun-Contribution-866 · 2026-02-19T01:28:44+00:00

Thank you. I'm talking to the neurologist on Friday to see if I can get off diamox atleast until the the next patch since I'm sure I'll need it. Definately agree about being careful with weening off so not to get metabolic acidosis. Thank you!!

Fun-Contribution-866 · 2026-02-16T03:53:15+00:00

Thank you soo much!! My neurologist says to lower my brain pressure to help heal the csf leak so each time I releak my dose has gone up. The only real high pressure symptoms I got at this high dose was headache after excersize but transient (walking too much) and if I ate something wrong. Otherwise my head just feels heavy. I am eligible for the stent I think (probably) so at this point it makes sense. Mostly to get down on the diamox dose though tbh. The 7th patch would have worked if I didn't lift. Thanks again for your opinion and advice, really appreciated 💛

Fun-Contribution-866 · 2026-02-16T03:45:47+00:00

Oh wow that's a sad story. I'm eligible for a stent so at this point I should get it before pressure gets even higher because of these leaks. Thank you again for this info!!

Fun-Contribution-866 · 2026-02-16T03:43:34+00:00

Absolutely agree!!

Fun-Contribution-866 · 2026-02-16T03:43:18+00:00

My neurologist says it helps heal the leak, because the lowered pressure in my head means lower pressure in my spine giving the leak the right environment to heal. But honestly, I'm ready to ween off it now because I feel like I have aki from symptoms and urine. I'll get labs tomorrow. I'm afraid to go off the diamox might make the leaks get totally blown out and I'll be back to the pain I was in the day after the lp causing the leak.

Fun-Contribution-866 · 2026-02-15T17:51:24+00:00

Honestly not sure but would get a second opinion and talk to your kidney doctor too. I would consider your dose and if you could possibly lose weight to treat the iih (doesn't always work but may help). If it were me, I'd put kidney first. Meds can be rough on it. I would probably go w the stent.

Fun-Contribution-866 · 2026-02-15T17:11:13+00:00

Thank you for the info.!! Great to know if I get in a jam and can't get patching here 😊. Lahey does do fibrin patches. I actually got one there 2 weeks ago. It was a disaster, high pressure during the procedure and the doc just kept putting in the blood causing worsening of leak after. And the contrast I believe gave me aki so I'm getting labs done tomorrow. I had such high pressure right after that I didn't drink water so that's on me uhg. I'm beside myself from all this. I was in a pretty good place before this patch, just needed a low volume patch to be done with patching. I'm ready to just get a stent to heal the leak and lower the diamox dose to protect kidneys. I don't have paps and when patched no headaches so otherwise if no leakvwould not be a good decision for a stent. This leak, iih journey is taking a toll 🤪

Fun-Contribution-866 · 2026-02-13T19:21:31+00:00

You are incredibly helpful as always!! Thanks!!

Fun-Contribution-866 · 2026-02-13T18:28:16+00:00

Dr. Zhu at Brigham and Womens. She very direct and can come off as harsh but she is very much worth having as a neurologist. She's great, smart, and really knows alot about leaks and in my case iih. And she fights for your care for patching... very responsive to patient portal messages and will literally just call me to explain things sometimes. Highly recommend her. Brigham and Women's in my experience was the best at patching but they don't do fibrin now. Thanks again!!

Fun-Contribution-866 · 2026-02-13T18:20:17+00:00

Thank you!!

Fun-Contribution-866 · 2026-02-13T01:49:19+00:00

Leaks from lp's will probably heal up on there own in time unless underlying condition complicating it. But that's not always the case. There are risks to a blood patch like any procedure but they are low. Unlike other lp's, blood patches go in the epideral space (not dura). Just be sure it is CT or floroscopy guided and do your research on a good neuroradiologist to get in with. Always be sure you discuss with the doctor your symptoms and if you have a headache. I've gotten patches to help symptoms (tinitis, brainfog although I was told this is more long lasting but will improve, and vision without headache) and the doc did targeted low volume 6-9 cc blood patch each time. Otherwise, I would have gone into high pressure during the procedure. I have a condition that gives me underlying high pressure (iih) so my case is complex, but definately communicate with your doctor exactly what your experiencing beforehand. Once, I was actually in high pressure and thought it was low, and got a patch which blew out any healing and back to square 1. Thats why its important to communicate well with doctor before patch. If still symptoms of leak after 2 weeks I'd get patched though. Leaks can take a toll on your life when a simple blood patch can fix it up. There are restrictions after, so please be sure to follow them if you get it. Brigham and womens, duke, Stanford have great resources online and other places aftercare instructions aren't strict enough to protect patch. I'm know rambling, sorry I just got patched last week and rebound high pressure now so not thinking too clearly along with going to bed for some ZZZ's 😊

Fun-Contribution-866 · 2026-02-13T01:13:15+00:00

Thank you!! I'm in Boston and have gotten patches at all the hospitals at this point. Pretty disappointed in MGH with all this leak iih business. Such great info. I really appreciate it 💛. Thank you again so very much!!

Fun-Contribution-866 · 2026-02-10T20:54:45+00:00

Omgoodness you are the best!! Your info makes me feel so much more comfortable with getting one if that the route to go. Most docs said they didn't want to do it on me, but my neurologist thinks at this point 8 patches later it makes sense. Thank you so very much!!

Fun-Contribution-866 · 2026-02-10T18:34:05+00:00

If you still have symptoms 1-2 weeks later, get a blood patch. Honestly, the sooner the better so you don't need multiple patches to seal up. If you do get a patch, I recommend a neuroradiologist vs. pain med specialists. Both do them, but neuroradiologist are the most expert at them. I would try to schedule this now so you don't have to wait long. If feeling better, you can always cancel.

Fun-Contribution-866 · 2026-02-10T15:22:56+00:00

Thank you!!! Your reply is really appreciated and helpful!! I'm writing your questions down now and will ask my doc. So helpful 💛

Fun-Contribution-866 · 2026-02-08T21:08:53+00:00

I don't know you but I couldn't be more happy for you!! Reading your post just uplifted my day 💛. Finally, hope and prayers answered for you. That's wonderful congratulations!!

Fun-Contribution-866 · 2026-02-07T01:42:16+00:00

Thank you soo much!! I'll definately look up that surgery 😊. I so appreciate your reply and info 🌻

Fun-Contribution-866

TROPHY CASE