Empty Sella Syndrome

Posted by caras @caras, Aug 29, 2012

Hello, Newly diagnosed with this syndrome. Basically pitatuary gland is pinched and/or not able to be found on MRI and now affecting my vision and my ACTH and prolactin levels are wacky. MRI found a csyst or possible CSF leakage. Anyone experience this? I am just beginnin this journey and looking for any information at all.
Thank you,
Cara in ND

Liked by sandhya60, amomma4

I received word from my G.P. that ESS was found on an MRI I'd had to rule out neuralgia. (I have Herpes Simplex I and I had a flare-up that caused pain in the trigeminal nerve). It was an incidental finding. I fall into the "overweight, middle-aged woman" category. I am mostly asymptomatic, although since my late 30's I've had cold intolerance. I've also had hot flashes that came and went for the last 10 years, but this year I started full-blown perimenopause, bouts of constipation, a decline in memory and joint stiffness. None of the labs my G.P. ran for these complaints showed any issues. I know some of these can be attributed to hypopituitarism, so I'm curious to see what the endocrinologist has to say at the appointment I have in late September. The literature makes it sound like hypertension (which I really don't seem to have, I run in the mid 110/60's to sometimes around 140/88-90) creates pressure in the brain, but I wouldn't think blood pressure would be related to spinal fluid pressure. Then again, I'm not a doctor. Does anyone know if weight loss can reverse this condition?

REPLY

Hello. I too have a possibility of having this diagnosis. It’s either this or an actual tumor. My symptoms are what caused me to get an MRI done and how it was discovered. Double vision, blurred vision, headaches that became different from the migraines I had been having for years. I’m also experiencing swallowing sides, but I’m told that may be due to the Hashimotos. I also have severe sleep issues. My cortisol levels are off the charts especially at night. I very seldom am ever able to sleep at night, and do most sleeping during the day. I also have horrible fatigue. I was recently diagnosed with Ehlers Danlos and POTS. Almost 20 yrs ago, I received a do of fibromyalgia. I’m a 44 yr old female. Looking to find any and all information I can about this and what others like me have experienced. I appreciate any and all feedback.

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@cherrylistic

Hello. I too have a possibility of having this diagnosis. It’s either this or an actual tumor. My symptoms are what caused me to get an MRI done and how it was discovered. Double vision, blurred vision, headaches that became different from the migraines I had been having for years. I’m also experiencing swallowing sides, but I’m told that may be due to the Hashimotos. I also have severe sleep issues. My cortisol levels are off the charts especially at night. I very seldom am ever able to sleep at night, and do most sleeping during the day. I also have horrible fatigue. I was recently diagnosed with Ehlers Danlos and POTS. Almost 20 yrs ago, I received a do of fibromyalgia. I’m a 44 yr old female. Looking to find any and all information I can about this and what others like me have experienced. I appreciate any and all feedback.

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Hi, @cherrylistic. Welcome to Mayo Clinic Connect. Sounds like you've been through a lot with your health.

Since you've experienced symptoms (double vision, blurred vision, headaches) that led to your MRI and the possibility of the diagnosis of Empty Sella Syndrome, I'd like to invite some of the other members in this discussion to return and offer any thoughts they may have about your situation. Please meet @sdsavage @sherrilynn @dazza333 @rcraftlady @jimmyj. I'd also like you to meet @jenniferhunter and @johnbishop, who may also have some input.

Given your other diagnoses, you may want to check out these other Mayo Clinic Connect discussions, as well:

– POTS https://connect.mayoclinic.org/discussion/auto-immune-diseasehypothyroid-postural-tachycardia-syndrome

– Fibromyalgia https://connect.mayoclinic.org/discussion/fibromyalgia-2/

– Hashimoto's disease and IVIG treatment https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment

– Ehlers Danlos syndrome https://connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability

When will you hear more about a definitive diagnosis related to Empty Sella Syndrome, @cherrylistic?

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Hi, @cherrylistic. I would like to add my welcome to Connect along with @lisalucier and others. Another discussion you might find helpful includes a link to a TED Talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

John

Liked by Lisa Lucier

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I was recently diagnosed with empty sella. I have multiple other symptoms and they all started immediately after having an epidural injection in my lumbar area. The other symptoms are tremors, dizziness, physical and mental fatigue, feeling of being cold on the inside. burning hot at other times, stumbling, cringing from pain enough to burst blood vessels in my eye, loss of vision, flashes of light, and constant thirst. Has anyone else had this happen? The doctors only want to look at MRIs and not connect the symptoms or the cause.

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@blange1977

I was recently diagnosed with empty sella. I have multiple other symptoms and they all started immediately after having an epidural injection in my lumbar area. The other symptoms are tremors, dizziness, physical and mental fatigue, feeling of being cold on the inside. burning hot at other times, stumbling, cringing from pain enough to burst blood vessels in my eye, loss of vision, flashes of light, and constant thirst. Has anyone else had this happen? The doctors only want to look at MRIs and not connect the symptoms or the cause.

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Hi, @blange1977 – Welcome to Mayo Clinic Connect. I moved your message to this existing discussion, "Empty Sella Syndrome," so you can talk with other members discussing this syndrome.

Thanks for telling a bit about your empty sella syndrome and the symptoms you are experiencing from it, and the timing of the symptoms starting immediately after your epidural injection in your lumbar region.

Click VIEW & REPLY in the email notification and you will be able to read through the past messages by members like @cherrylistic @aprillelain @hollyheinzig @oldkarl @dazza333 and others. Hoping these members will have some input for you on a potential connection between your epidural injection and the ESS. I'd also like to introduce you to @johnbishop and @hopeful33250.

@blange1977 – will you share more about the circumstances with having an epidural injection?

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Hello @blange1977 — I would like to add my welcome to Connect along with @lisalucier and other members. One of the rare side effects of an epidural injection in the lumbar region can be nerve damage which I think can cause some of the symptoms you are having. It sounds like you have already discussed your symptoms with the doctors. Have they given you any reasons they don't think the symptoms are related to your injection?

Epidural Steroid Injections: Risks and Side Effects
https://www.spine-health.com/treatment/injections/epidural-steroid-injections-risks-and-side-effects

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@blange1977

I was recently diagnosed with empty sella. I have multiple other symptoms and they all started immediately after having an epidural injection in my lumbar area. The other symptoms are tremors, dizziness, physical and mental fatigue, feeling of being cold on the inside. burning hot at other times, stumbling, cringing from pain enough to burst blood vessels in my eye, loss of vision, flashes of light, and constant thirst. Has anyone else had this happen? The doctors only want to look at MRIs and not connect the symptoms or the cause.

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Hello @blange1977, and once again let me welcome you to Connect.

I am so sorry to hear of these very uncomfortable symptoms connected with your epidural injections. I was not familiar with the side effects, but after reading the link that John Bishop provided I can see where the side effects can be very difficult.

What type of specialists are you now consulting with?

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@johnbishop

Hello @blange1977 — I would like to add my welcome to Connect along with @lisalucier and other members. One of the rare side effects of an epidural injection in the lumbar region can be nerve damage which I think can cause some of the symptoms you are having. It sounds like you have already discussed your symptoms with the doctors. Have they given you any reasons they don't think the symptoms are related to your injection?

Epidural Steroid Injections: Risks and Side Effects
https://www.spine-health.com/treatment/injections/epidural-steroid-injections-risks-and-side-effects

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I am a veteran and these doctors are either at the VA or an outside doctor contracted with them. The first VA neurologist said he did not know what I had and exited me from his practice. Then after some time and ER visits the VA sent me to a contracted neurologist. He did the same MRI with contrast that the VA did but he found the empty sella. He wants to use the MRI as the only source of data and is not listening to me about the symptoms starting immediately after the epidural injection. There has to be a link. During this past year I have seen an Endocrinologist, neurologist, nuerosurgen, pain management specialist, anesthesiest, and my primary doctor.

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@johnbishop

Hello @blange1977 — I would like to add my welcome to Connect along with @lisalucier and other members. One of the rare side effects of an epidural injection in the lumbar region can be nerve damage which I think can cause some of the symptoms you are having. It sounds like you have already discussed your symptoms with the doctors. Have they given you any reasons they don't think the symptoms are related to your injection?

Epidural Steroid Injections: Risks and Side Effects
https://www.spine-health.com/treatment/injections/epidural-steroid-injections-risks-and-side-effects

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I do believe that the nerve or surrounding area was damaged during the injection. All my symptoms point to arachnoiditis. The doctor who did the injection said, "I have been doing these for 40 years and have never had a problem, so it can't be me". He was not even open to discussions about what could have happened during the procedure.

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@blange1977

I do believe that the nerve or surrounding area was damaged during the injection. All my symptoms point to arachnoiditis. The doctor who did the injection said, "I have been doing these for 40 years and have never had a problem, so it can't be me". He was not even open to discussions about what could have happened during the procedure.

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Just sharing my thoughts here — 40 years of experience or not accidents happen. If it were me I would probably have been a little angry at first but what's done is done. Now that it's happened what can we do to fix or treat the resulting conditions or symptoms. The doctor should be open to listening. If not and it was me, I would try to seek a second opinion on whether or not the injection caused nerve damage and how can we fix or treat it.

Hoping you find some answers soon.

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I had a CSF leak out my right nostril start in April 2012 after a physical attack. I had severe painful spasms to the base of my head, face and spinal area. I didn't know what it was until July. I had a "fat patch" repair in August. Occasionally I would have a drip out my left nostril, but couldn't catch enough to give a sample. In one CT taken in 2015 the Radiologist saw what he called Empty Sella Syndrome. I still couldn't get it looked at unless I could give a sample of spinal fluid. In my vision I have black floater spots and now, in addition, as of 2019 have white hazy patches which are almost blinding. Now the leak is more consistent. I saw an ENT who said he can do a bone repair to stop the leak in my left nostril. He's not willing to share consulting with a Neurosurgeon because, with out even discussing with me, keeps cancelling the referral and appointment my PCP had in place feeling that it is not necessary for him to be involved with a CSF patch procedure. My PCP is sending me to see the Neurosurgeon for the Empty Sella Syndrome part. There isn't enough knowledge about my situation here because it's so rare, or not talked about enough. I am concerned about what type of treatment would be best. If there is just another patch done, how will the over production of spinal fluid flow be controlled?

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@lornabaxter

I had a CSF leak out my right nostril start in April 2012 after a physical attack. I had severe painful spasms to the base of my head, face and spinal area. I didn't know what it was until July. I had a "fat patch" repair in August. Occasionally I would have a drip out my left nostril, but couldn't catch enough to give a sample. In one CT taken in 2015 the Radiologist saw what he called Empty Sella Syndrome. I still couldn't get it looked at unless I could give a sample of spinal fluid. In my vision I have black floater spots and now, in addition, as of 2019 have white hazy patches which are almost blinding. Now the leak is more consistent. I saw an ENT who said he can do a bone repair to stop the leak in my left nostril. He's not willing to share consulting with a Neurosurgeon because, with out even discussing with me, keeps cancelling the referral and appointment my PCP had in place feeling that it is not necessary for him to be involved with a CSF patch procedure. My PCP is sending me to see the Neurosurgeon for the Empty Sella Syndrome part. There isn't enough knowledge about my situation here because it's so rare, or not talked about enough. I am concerned about what type of treatment would be best. If there is just another patch done, how will the over production of spinal fluid flow be controlled?

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@lornabaxter I wasn't familiar with your diagnosis, but I found some interesting research studies. The first one discusses treatment and what specialists should be consulted, I think you should be seen by specialists in different disciplines as differing viewpoints can often find a more comprehensive solution if they work together. That is exactly what they do at Mayo, and these different specialties consult with each other as to what is best for the patient.

I am a Mayo spine surgery patient, and that is how they evaluated my case, and my neurosurgeon even received a phone call with results of a test completed by another specialist right before his appointment while I was there at his consultation. It's a team approach and they put the patient first. Your ENT is putting himself first, and possibly it maybe profit motivated. At Mayo, all staff are employees and not owners of private practices looking for financial gain, so that does not affect their medical decisions. As a patient, you have the right to multiple medical opinions, and you can fire a doctor who is not serving you. I hope your insurance allows you to make your own choices in specialists. You can always call the insurance company and ask about your options for consultations. Personally, I wouldn't trust a doctor who is going behind your back and cancelling referrals to other specialists who might take the treatment of the case away from him causing a loss of his potential income. You have to chose what you think is right for you based on medical opinions and you should be allowed as many opinions as you need to make an informed choice.

I am an artist, but I have a biology degree and worked in research for a neuro-anatomist at a university, and I look for research studies in literature to figure things out. I did this for my own case on spinal cord compression that had some unusual symptoms, and I found what 5 local spine surgeons missed. I contacted a surgeon at Mayo with that information, and he helped me. I had to advocate for myself. Coming to Mayo changed my life and I wish I had come there first. If coming to one of the Mayo Clinic campuses is possible for you, I would recommend it. They see many more patients with rare conditions than most medical centers. Here is my Mayo story if you are interested. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Here is the research literature I found for you on Empty Sella Syndrome.
https://academic.oup.com/jcem/article/90/9/5471/2838746
https://journals.sagepub.com/doi/abs/10.1177/194589240301700205
https://www.jstage.jst.go.jp/article/nmc/45/8/45_8_428/_article/-char/ja/

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@jenniferhunter

@lornabaxter I wasn't familiar with your diagnosis, but I found some interesting research studies. The first one discusses treatment and what specialists should be consulted, I think you should be seen by specialists in different disciplines as differing viewpoints can often find a more comprehensive solution if they work together. That is exactly what they do at Mayo, and these different specialties consult with each other as to what is best for the patient.

I am a Mayo spine surgery patient, and that is how they evaluated my case, and my neurosurgeon even received a phone call with results of a test completed by another specialist right before his appointment while I was there at his consultation. It's a team approach and they put the patient first. Your ENT is putting himself first, and possibly it maybe profit motivated. At Mayo, all staff are employees and not owners of private practices looking for financial gain, so that does not affect their medical decisions. As a patient, you have the right to multiple medical opinions, and you can fire a doctor who is not serving you. I hope your insurance allows you to make your own choices in specialists. You can always call the insurance company and ask about your options for consultations. Personally, I wouldn't trust a doctor who is going behind your back and cancelling referrals to other specialists who might take the treatment of the case away from him causing a loss of his potential income. You have to chose what you think is right for you based on medical opinions and you should be allowed as many opinions as you need to make an informed choice.

I am an artist, but I have a biology degree and worked in research for a neuro-anatomist at a university, and I look for research studies in literature to figure things out. I did this for my own case on spinal cord compression that had some unusual symptoms, and I found what 5 local spine surgeons missed. I contacted a surgeon at Mayo with that information, and he helped me. I had to advocate for myself. Coming to Mayo changed my life and I wish I had come there first. If coming to one of the Mayo Clinic campuses is possible for you, I would recommend it. They see many more patients with rare conditions than most medical centers. Here is my Mayo story if you are interested. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Here is the research literature I found for you on Empty Sella Syndrome.
https://academic.oup.com/jcem/article/90/9/5471/2838746
https://journals.sagepub.com/doi/abs/10.1177/194589240301700205
https://www.jstage.jst.go.jp/article/nmc/45/8/45_8_428/_article/-char/ja/

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@jenniferhunter Thank you Jennifer for your information. I don't live where a Mayo Clinic is. I'm in Portland Oregon being seen at OHSU. Since they are a research hospital, I am hoping they could work with someone at the Mayo clinic.

Liked by Jennifer Hunter

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@lornabaxter

@jenniferhunter Thank you Jennifer for your information. I don't live where a Mayo Clinic is. I'm in Portland Oregon being seen at OHSU. Since they are a research hospital, I am hoping they could work with someone at the Mayo clinic.

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@lornabaxter Mayo Clinic has a Care network where they work with other hospitals and doctors have access to consult with Mayo Physicians. If your hospital system isn't part of this, you could tell them about this. Here's a couple links.
https://www.mayoclinic.org/about-mayo-clinic/care-network/members
https://www.mayoclinic.org/about-mayo-clinic/care-network

Liked by Lisa Lucier

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