syrinx - empty sella-pituitary

[thejasmine29]

Hi all,
I'm just going through the process the past couple months of trying to figure myself out. Ive developed severe neuro problems from head to toes with drs at local clinic shaking their head and offering me anti depressants. Understanding Im my only advocate out there,  Ive gone though past tests and Ive put together shocking pieces to a puzzle I dont yet have done. I do have an appt with Dr Oro in a few weeks, hoping he can help sort me out.
This has been a crazy saga the past few years, not having gone to a dr in 8 yrs before. Fit, toned, tan - gone in months...Im sure many can relate. Anyway in my crazy saga I ended up at the door of an endocrinologist last summer. He ran a whopper amount of tests. Some came back a bit off and I was now insulin resistant. He requested an MRI of my pituitary, insurance said no and he didn't feel they were off enough to fight. His office was also supposed to get an MRI I had done that spring. Going through these tests I read on that MRI in incidental findings an empty sella. Also in CT scans this past fall / winter I saw my liver being fine to more and more fatty nodules. So with those in hand, went back for a check up hoping perhaps he could help me with why I just cant get past my most recent surgery in December. He is very good, very thorough but patience of a gnat but that empty sella perked him right up! He was so upset, kinda funny to see really. His office apparently had not followed through getting that MRI and if he had known the ES he most certainly would have had insurance get out their wallet. So I told him I would happily drop him off a copy the next day (brain mush, had whole stack done for him and forgot of course!) and they set up blood work and MRI. Blood work back first, massive prolactin levels, massive FSH levels puts me basically in full menopause. Not going through, as in done. Im 43. Thyroid even worse. Vitamins off. Next to no cortisol. No wonder I felt so lousy! MRI confirms empty sella, no tumors. Follow up tests show cortisol works when pressed but it gave me a horrible headache and eyes messed up. Summary apparently is pituitary failure but not addisons disease...its just getting smushed badly. Add that to syrinx and apparently I have lots of pressure going on. Not new news to me.
Anyway anyone who has had an empty sella / high pressure had this much problem with their pituitary gland? From what I understand, even as uncommon as empty sellas are, this is even more. Endo requested up follow up visit which actually is today. I know though he will be looking at it on an endo level. He could very well put me on multi meds and / or send me to a neuro. I would love to hear from anyone with empty sellas on their experience with this as part of their problem and how it was addressed. I also wonder how close to Oro and testing....should I hold off taking any meds (specifically for the pressure) so that he can see where the pressure builds easier or just get going to hopefully get relief from some symptoms or at least exclude them from the other problems. I would love opinions and advice!
Thank You!

[gimlihydeRN]

I have been just discovered with empty sella with chiari.. I too see a endocrine docter for years graves disease had thyroidectomy 2007... auto immune issue with Epstein barr way reactive even over 18 months later, and just had liver biopsy to rule out autoimmune liver issue.... cannot be unrelated to empty sella.. getting it worked up piece by piece. my next step is to return to endocrine specialist regard to all this anyone elsegoing thru this  also carefully watvhing my eyes for difficultys.. my eye doc says I have peripheral vision loss and glacomia unusual  for a 3 yrs old yet this was before the chiari was diagnosed, eye app pending

[selmaS]

   I know a few members also have the tens unit, not sure if they used it in this manor, thanks for the tip, I am sure it may help someone get relief.

Goodness u have been thru so much, I pray u can get more answers so u can have relief from ur current pains.

[thejasmine29]

I had already had numerous unexplained neuro problems before I had surgery last December. It was not a good time for surgery, for sure. I had 5 major ones in 3 yrs. But it was a cancer scare, they couldn't quite decide what type of mass it was and what exactly it was on and connected to. So there weren't many options. I came out of it though with unbelievable problems I had never had.

For instance, I had vibrations non-stop for 6 months in abdomen and bum area.I didn't know how else to describe them to the drs, it was just vibrations.Its like chinese water torture, you just cant get used to it! I have found out since that apparently that is just your intestines working, the problem is messed up signals going to your brain about what it is.

My intestines swelled and rolled. Without lots of potty talk i developed all types of herniations in my lower parts that are permanent. The intestines would press on each other and create obstruction. It really has been indescribable. Nerves running down my front and back leg, bladder spasms, my intestines in non-stop spasms. Im already on way too much nerve meds and they just dont touch this. Intestinal meds they tried did not either.

But once a dr asked in passing what was being done about my syrinx (nothing!!) and I researched more I had a thought. My husband kept telling me to try it but I had to build up some guts cause I couldnt imagine making the nerves worse.
Anyway, I have a TENS unit at home. Ive used it for a few years now on my first big neuro problem that started this journey. I hadn't used it on this stuff though. Im sure if you dont already have one, you can look up more detailed info on them. You can even get them on amazon.com for pretty cheap. Mine has two sets. Each set has two pads to send electricity through them. So I placed the first set on each side of my spine, at my waist and the second set just above those. Once again on each side of the spine.
I would have paid any amount of money for relief for all those months. Little did I know what help that TENS next to my bed could do! As I dialed it up, the nerves reduced. Not all but certainly some quite a bit. The vibration part over the next week has not returned. It was both amazing but yet horrifying that its actually neuro problems!
There are still many that flare day and night, and I use it day and night. It hasn't cured me but it does really calm most of them quite a bit! Helps my intestines, they no longer swell and roll. Bladder spasms as well. It has kept me sane while Ive tried to wade through this mess. Hoping Dr Oro has some help or thoughts for me!

Very long story short, Use a TENS unit. Place both sets of leads on each side of the spine. You can play around with it and adjust it but for me personally at the waist and then just up seems to control best. The electricity running across it seems scramble the bad nerve signals going up to the brain!

[selmaS]

  What is ur trick for the nerve issues? I am curious : )

[thejasmine29]

also has helped bowels and bladder that had become unmanageable.

[thejasmine29]

Thank You! Im in search of a new endo. I was under the impression with so many parts failing he was handling it as a whole but he does not want to do anything about the prolactin, low acth, low cortisol and doesnt treat the female stuff. Frustrating but it does give me more testing to bring along !
I have a cardio visit tomorrow, echo stress and then they are giving me an "event monitor" to wear for the next month. My nerve problems below the waist and down my legs are hard enough to control with my TENS but lately its getting beyond me. Goes up my ribs and across my chest when I cant monitor at night at its getting rather scary. It makes my chest muscles ache the next day. Also wake up with heart racing. Anyone else have this?  
On a good note if anyone is having nerve problems, vibrations below the waist Ive come across a trick that helps quite a bit!

[selmaS]

  There are many Drs that just do not know or accept that Chiari and the pressure will affect us in these ways....including our sinus and pituitary gland since they are in this small area.

Once u see a Chiari specialist like Dr O u will have more answers, he may want to do more testing to see how u r affected and how ur overall health is, this is important and needs to be done, so many feel it is just taking longer to feel better, but there is always a reason for what they do.....

Hang in there : )

[thejasmine29]

Thank you for your feedback! He seems that all this has nothing to do with any pressure, its just suddenly changed this past year. When I pressed him on it, he told me it could be possible that the pressure is affecting it...it does happen. But its working enough for now. Huh?

[selmaS]

  Hi...I did not have empty sella but am aware we have had a few members with this issue as well as pituitary issues as the over crowding does compress all in that area.

I did have premature ovarian failure or early onset menopause which ever way u want to call it, and I do have Hashimoto's thyroiditis and I feel it was the Drs not seeing or catching my thyroid issue that caused it b4 I was 40.

As for meds or no meds b4 seeing Dr O...ask his office staff, inform them what u r on, most likely they will suggest u stay on them.....just bring copies of ALL testing u have had to date he will be able to see from that what is going on and the pressure u have,.