Depressed

General
1

Hi Everyone,

I have not really given an update on my situation in a long time... I thought I would take the time to do so now.

I was diagnosed with bilateral ES back in November of 2014. I had intraoral surgery on my left side in December of 2014. Some of my symptoms seemed to go away completely and some remained. I assumed it may take some time for everything to "go back to normal" since everything had been compressed for such a long time.

Within the last 2 months ALL of my symptoms have become progressively worse. It seems like the symptoms I thought were gone have also returned. I feel like I felt before surgery except worse. I felt like not enough of the styloid was removed on the left, possibly my right side was acting up and/or both. I also thought maybe I had IH (Intracranial Hypertension) and/or POTS (Which I am currently being evaluated for).

My symptoms are so bad now that I can barely function or do normal day to day activities. I feel like I am going to pass out multiple times a day. My surgeon has been out on leave for a few months now and there is no one else in my area to help. I have been to the ER 3 times (Which we all know is useless but when you feel like you are going to die... it seems like the only thing to do). I have been to my Primary Care, Neurologist, Cardiologist to rule any and all other things out and of course everything comes back normal.

This week I was able to get in with an ENT who is "familiar" with ES. I only went to him so he could look at a recent scan I had in the ER. You can see quite a decent amount of styloid left on my surgical side. The right side is extremely long and can be felt by pressing on the inside of my throat. Both seem to be going across the arteries.

I am beyond upset and just miserable. I have no time off from work and have already missed so many days. I am in the process of trying to get my Family Medical Leave approved. My Primary Care says she can only give me 2 weeks... I'm not sure what I will do after that since no other doctors are associating my symptoms with anything let alone ES because they know nothing about it.

What are we supposed to do in these situations, with a rare health issue that no doctor is willing to research and acknowledge the symptoms that it can cause. I feel angry and hopeless. None of us should have to go through these kind of situations.

I see some of my other 27 year old friends out living life, enjoying what the world has to offer and I can't even imagine moving too far from my couch.

Today I have sent all of my medical records and scans to Dr. Cognetti in PA. I am praying that he will help me. Hopefully sooner rather than later. If anyone has any thoughts, opinions or advice please send it my way. I can use all the help I can get.

Now to end my rant on a more positive note... I am so grateful for this Support Group. When no one else in your life gets what you are going through it is so comforting to be able to log in and speak with the people who DO understand. I have talked to so many wonderful individuals and I thank you all for your support. It means the world!

Thank you for letting me express my feelings and I hope everyone has a great weekend and a very Happy Easter!

-Krista

2

Krista,

I really feel for you, especially after having had surgery, for things to return, and worse too... to be stuck at home, unable to do things which everyone else takes for granted and having symptoms like you're getting must be so worrying too. Rant on here as much as you want, as you said at least we understand. Praying that Dr Cognetti can help you,

God Bless x

3

Krista: I am so sorry that you are feeling so lousy, and having problems functioning. Praying for some answers with Dr. Cognetti for you…I am glad you shared your story, so we could pray for you…Easter Blessings to you!

4

Thank you both so much!

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Krista, did you try to contact those doctors I mentioned? I am so sorry to hear this for you!! I am praying things turn around for you soon!!

6

Hey T - I called around different departments in Duke and can’t get in with anyone until the end of this month. They also told me that aside from my surgeon only one other doctor deals with ES. I’d rather just go see Dr. Cognetti since he is so experienced with ES. Thank you!



shoppergirl said:

Krista, did you try to contact those doctors I mentioned? I am so sorry to hear this for you!! I am praying things turn around for you soon!!

7

Hi Krista,

Hope you are getting the support and love you need as you go through this. This is no fun at any age, but when you're 27 years old you do not want to be bed ridden.

You do need to rant sometimes. There are negative realities to having a rare disease, but you've got the right idea also looking at the positive.

Many paths lead to dead ends, but some at certain to at least lead to something better than where you are.

Good luck with Dr. Cognetti!

Thank you for your sincere post. It helps me to know that I'm not alone, but I wish you did not have to suffer.

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Thank you so much for your kind words! Everything you said is so true. I’m just so thankful for this site. It’s what helps me get through knowing I’m not alone. I’m happy I can reach others as well and let them know they aren’t alone. We are all in this together. Makes it just a little easier.




minnesota said:

Hi Krista,

Hope you are getting the support and love you need as you go through this. This is no fun at any age, but when you’re 27 years old you do not want to be bed ridden.

You do need to rant sometimes. There are negative realities to having a rare disease, but you’ve got the right idea also looking at the positive.

Many paths lead to dead ends, but some at certain to at least lead to something better than where you are.

Good luck with Dr. Cognetti!

Thank you for your sincere post. It helps me to know that I’m not alone, but I wish you did not have to suffer.

9

So you were DXd with POTS I seen on another post. Is this why you are feeling so poorly or is it the ES still? Will you be going for more surgery to remove more on that left side and also remove whats on the right? I think its awful you go through surgery and dont get relief :(

10

Hi Lisa,

I think it is a mix of both the POTS and the ES. I am in the process of trying to figure that out. My ES surgeon has been out on a medical leave for the last couple of months. She was supposed to return today but her office called the other day and told me it would be extended until May. I sent all of my records to a different surgeon. I am just waiting for him to review them. I am thinking I will need a revision surgery on the left side and eventually have the right side taken out. I won't know exactly until I speak to the new surgeon.

I see you have your appointment tomorrow. I hope it goes well! I don't want my situation to discourage you as it is a little different with the POTS. I definitely have some relief from the intraoral surgery but I do believe not enough of the styloid was taken off.

I experience very similar symptoms at night as you do. I have to basically stay in one position perfectly straight. I cannot remember the last time I had a "good nights sleep". When I lay down I get a ton of pressure, pain and pulsing/beating in my head and neck. I can tolerate it if I lay on my back but if I turn at all it is really uncomfortable. It is so frustrating because lack of sleep exasperates all of the symptoms.

I hope this is helpful! I wish you luck tomorrow! :)

Krista


Lisa said:

So you were DXd with POTS I seen on another post. Is this why you are feeling so poorly or is it the ES still? Will you be going for more surgery to remove more on that left side and also remove whats on the right? I think its awful you go through surgery and dont get relief :(

11

I wonder what that pressure/pain is in our heads. Do you thinks a sign of a stroke or anuyrism coming on? :(

12

I think it is just the styloid pressing on nerves and arteries. I know the feeling of being scared and worried of the other things though. I think most of us have had those fears. Just try to relax until you meet with your surgeon (I know way easier said than done) But the more you work yourself up the worse your symptoms will be. It will all work out. Try to stay calm :slight_smile: We are all here for you!



Lisa said:

I wonder what that pressure/pain is in our heads. Do you thinks a sign of a stroke or anuyrism coming on? :(

13

Lisa, I think certainly for me, the pressure and pain in my head is caused because the veins are compressed, so the blood can go into the brain okay through the arteries, but slows to get out again because of the squashing- so that causes a slight build up of pressure in my head! That gives a headache and pulsing. It's not a stroke or aneurysm, but is scary and feels like it. That's why I have to sleep a bit raised, it helps to reduce the pressure a bit.