Aa
Frustrated and sad
I'm mainly just venting since I know you guys will understand. Had a MRI done because symptoms are progressing. More memory loss, can't find my words (or many other things for that matter lol), headaches are coming back full force despite the 1500 mg of diamox per day. (I have Psuedotumor Cerebri) My balance is completely off (keep falling and stumbling). I'm just not me. So went to my NS who I love...not a chiari specialist but I have complete trust in him, especially after the last couple of weeks. He wants to put a VP shunt in. Before we schedule surgery he wants me to get an eye exam to look for any swelling behind my eyes. In the beginning of the year, he did say losing weight may help. It is very hard for me to lose weight. I used to go to the gym and was eating right and nothing changed so it's a challenge for me. But I've lost 15 pounds (not a lot but a good start I think). I'm overweight which can be a cause of of the increased pressure. But the diamox isn't helping anymore. So he wants to put in a shunt. I'm very scared about that.
Then, on the MRI, they found multiple nodules on my thyroid, 1 measuring big enough to cause concern. So now I have to get an ultrasound on it tomorrow and have an appointment with a general surgeon in January to schedule a biopsy. Had blood work done and thyroid is a little low but still in the normal area. Vit D is extremely low and all normal blood work was fine.
In addition, I have milk and blood coming from my right breast. (Very scarry) So I have to go see a breast doctor and have a work up done on that.
I'm lucky because I'm still able to work and do things with my kids but that doesn't mean going through these things are easier. I try to explain to my family but they don't understand. As hard as they may try, they don't. This round of appointments I've decided not to tell anyone except my husband and 1 sister. I figured I'd wait until after the holidays when I hopefully have some results or treatment lined up. I just don't want to bring them down during the holidays.
I love my husband dearly....he makes me laugh...the problem is, it hurts to laugh. The pain is strong and sometimes I feel like I'm going to black out.
When I can't remember something or find the simplest word, I feel like people are looking at me like I'm an idiot. I'm just frustrated, scared and sad. Feel like my whole body is falling apart.
Thanks for listening. I hope you all have a wonderful holiday and pain free new year!!
Then, on the MRI, they found multiple nodules on my thyroid, 1 measuring big enough to cause concern. So now I have to get an ultrasound on it tomorrow and have an appointment with a general surgeon in January to schedule a biopsy. Had blood work done and thyroid is a little low but still in the normal area. Vit D is extremely low and all normal blood work was fine.
In addition, I have milk and blood coming from my right breast. (Very scarry) So I have to go see a breast doctor and have a work up done on that.
I'm lucky because I'm still able to work and do things with my kids but that doesn't mean going through these things are easier. I try to explain to my family but they don't understand. As hard as they may try, they don't. This round of appointments I've decided not to tell anyone except my husband and 1 sister. I figured I'd wait until after the holidays when I hopefully have some results or treatment lined up. I just don't want to bring them down during the holidays.
I love my husband dearly....he makes me laugh...the problem is, it hurts to laugh. The pain is strong and sometimes I feel like I'm going to black out.
When I can't remember something or find the simplest word, I feel like people are looking at me like I'm an idiot. I'm just frustrated, scared and sad. Feel like my whole body is falling apart.
Thanks for listening. I hope you all have a wonderful holiday and pain free new year!!
COMMUNITY LEADER
Hi..the lactating can be the result of compression of the pituitary gland.....and the thyroid nodules is Hashimoto's thyroiditis, an autoimmune thyroid condition many with chiari tend to have...me included....
Do ask ur Dr to check ur magnesium, potassium, and vit B12 levels...u can have low levels of magnesium, that can hinder absorption of vit D......
I pray ur Dr can help u with relieving the pressure....
and ur DH tones down his comedy.....
Have a Merry Christmas : )
"selma"
I feel your pain and flustration. I'm happy to hear you have a husband that does understand and is funny, but yes sadly to say laughing makes us worse. Just take a deep breath, enjoy your holiday with your family and you will get the answer's you need after the holiday. Wish you the best.
I'm just going out the door for my 2nd MRI flow study done, so plese also keep me in your prayer's. Just going to make sure every thing is o.k. in the head in spine. I'm so thankful for having this done. Enjoy your holiday's.
I'm just going out the door for my 2nd MRI flow study done, so plese also keep me in your prayer's. Just going to make sure every thing is o.k. in the head in spine. I'm so thankful for having this done. Enjoy your holiday's.
I would ask to be seen by an Endocrinologist....sounds like the pituitary and thyroid issues could be playing a part with your symptoms. What type of thyroid test did they do? If it was just the basic TSH, that may not be telling the whole story. If your body is not converting the T4 into T3 properly, that would not show on a TSH test (this is the hormone your pituitary gland produces when it senses your T4 levels are low). So, if your T4 levels are find but are not being converted properly...you could still have a thyroid issue even with normal blood work. The fact that you have nodules compounds that fact.
I would ask to see an Endo and have your free T4/T3 levels checked as well as having your pituitary gland hormones checked.
This could also be a HUGE factor on why you find it difficult to lose weight!! With dealing with Chiari, my hypothyroidism was shoved to the side and not monitored properly. After surgery, when it was checked and found to be low I was put on a higher dose of thyroxine. Next thing I knew, I was shedding the extra 20 pds I was carrying! I also found that it relieved some of the symptoms I had.
So like I said...hugely important to get this checked into asap!! It is amazing what an imbalance of hormones can do!
Stormy
I would ask to see an Endo and have your free T4/T3 levels checked as well as having your pituitary gland hormones checked.
This could also be a HUGE factor on why you find it difficult to lose weight!! With dealing with Chiari, my hypothyroidism was shoved to the side and not monitored properly. After surgery, when it was checked and found to be low I was put on a higher dose of thyroxine. Next thing I knew, I was shedding the extra 20 pds I was carrying! I also found that it relieved some of the symptoms I had.
So like I said...hugely important to get this checked into asap!! It is amazing what an imbalance of hormones can do!
Stormy
I agree about the endo and everything said above.
I saw an endo specialist this week for my pseudo tumor and he said everything listed above.
My chiari ns ordered a complete endo workup based on empty sella (pituitary shoved out of boney structure) and pseudo.
My ns did say med may lower pressure and shunt may be necessary so it sounds like you are on the right track.
You do have symptoms that sound like your pituitary gland is affected.
Please keep us updated.
I just started diamox and hope it helps while the figure me out:)
I saw an endo specialist this week for my pseudo tumor and he said everything listed above.
My chiari ns ordered a complete endo workup based on empty sella (pituitary shoved out of boney structure) and pseudo.
My ns did say med may lower pressure and shunt may be necessary so it sounds like you are on the right track.
You do have symptoms that sound like your pituitary gland is affected.
Please keep us updated.
I just started diamox and hope it helps while the figure me out:)
Thanks All. Just had a bunch of blood work done. My prolactin levels are good (hormone for lactation from pituitary) but my Vit D is horrible so I need to start taking some supplements for that. Currently waiting for the results of my ultrasound of my thyroid. My thyroid blood work showed at 1.8 which is on the lower end of normal (scale being .8-5.4). I went to an endo last year and she said everything was fine though I know things can change through the year. What concerns me about the breast is that blood is coming out too and it is just the one side.
NS wants to do the shunt and I'm scared to death. I just want to find a reason for him not to. Maybe, if given more time, I can lose some more weight. Maybe I dont' really need it and can just live with headaches all the time and the dizzy spells and vision impairments. But I know that isn't the right thing to do.
Selma-what is DH? You said something about his comedy? :)
I hope you all enjoyed your holidays and the family time and thank you so very much for helping me understand that I am not alone. I guess I need to inform my family.
Gently hugs to you all.
Deanna
NS wants to do the shunt and I'm scared to death. I just want to find a reason for him not to. Maybe, if given more time, I can lose some more weight. Maybe I dont' really need it and can just live with headaches all the time and the dizzy spells and vision impairments. But I know that isn't the right thing to do.
Selma-what is DH? You said something about his comedy? :)
I hope you all enjoyed your holidays and the family time and thank you so very much for helping me understand that I am not alone. I guess I need to inform my family.
Gently hugs to you all.
Deanna
Sorry about just the hi comment something was going on with the computer. Just wanted to let you know your in my prayer's. I know this has be be scary. I know Selma suggested Magesium vit. and I went right out and started taking them. When I was in the hospital my sodium level got really really low. I was also scared. We don't realize that our body need's certain vit's. and food's otherwise we just don't work right. I'm glad to see you got blood work done. This will tell you a lot. Your in my chirian prayer's. Have a better day. :) Linda
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