what is this? Update - post 107/Completely Healed!

[KPeveler]

I will definately tell him not to schedule any appts. for the day at least. Thank you. I don't know if I'll tell him everything in your post though. I'm already getting the, "I can't believe you talked them into more tests...they're not even going to find anything...", kinda talk.

I never thought about him seizing while they're trying to insert the needle.

again, except in exceptionally rare circumstances (like you see on medical shows), a spinal tap is NOT dangerous. however, it does make you feel pretty miserable afterwards. a lot of people report dizziness or nausea after a spinal, so you may want to make sure that he doesnt have to walk far to rest afterwards. once again, if he is like my dad, he will not only feel icky, but he will be in a bad mood because he feels helpless.

the doctor will take all necessary precautions about the seizing during the spinal tap. i just wanted you to know they may sedate him, so you may want to ask the doctor about that. if he is sedated, it may be a longer appointment than you think.

i am NOT a doctor, so please do not take my word as gospel! i just wanted to raise some issues that you may want to ask the doctor about before you get there. also, you may want to make sure your husband is there for the conversations, so he doesnt try to do too much.

again, i am NOT a medical authority, so please do reading on your own. this seems to be a pretty good article from a reliable site:

http://www.emedicinehealth.com/spinal_tap/article_em.htm

Call the doctor with all questions, of course!

As to the "why bother with the tests" thing... i have been there. it is SO frustrating to look for a diagnosis. i have been trying for 7 years, and you just have to keep fighting. you both will figure it out! just keep advocating for yourselves, and you'll make it!

 

[breezy1077]

Thank you so much KPeveler. I will keep y'all posted as usual.

 

[Mackey Mouse]

I am reading here every day and watching for your updates Breezy... you would be surprised how many people are routing for you and your husband, they may not post, but they are reading. I know this as some have told me...so know that there are lots of people thinking of you both..

 

[breezy1077]

I am reading here every day and watching for your updates Breezy... you would be surprised how many people are routing for you and your husband, they may not post, but they are reading. I know this as some have told me...so know that there are lots of people thinking of you both..

Thanks Mackey Mouse, it helps to have the support, which is why I speculated on my prayer thread that perhaps the DisBoards were an answer to one of my prayers. Y'all have given me an outlet to express the concerns and fears that I otherwise would not express IRL. And, as a bonus, y'all have provided much support and comfort. Thanks to everyone, and for anyone else who is experiencing anything remotely similar, or who have the need to post on this forum - I will keep you in my prayers.

Thanks again.

 

[breezy1077]

Ok, so here's where we stand. Third MRI (this one of the neck area) - normal; new bloodwork - normal; Spinal tap - sched for next Fri.; HD blood test done, but no results back yet.

If nothing is found, what do we do then - what else is there to test for?

DH keeps telling me it's probably just stress - could he be right? He's not any more stressed than normal - he has a high stress level job and I think they would have already mentioned stress if that were it.


Ugh!!!

 

[debbido71]

I feel so much for what you and your family are going through. I am also going through similar issues myself and only have a "movement disorder" diagnosis so far. This is after 4 years! Sometimes there are no easy answers. The doctors can only treat the symptoms.
Anyway, I wanted to make sure you research spinal headaches before he has a spinal tap. When I had mine a few years ago. I was warned about the possibility of it happening afterwards. And that is what happened to me. Essentially if the hole doesn't close right up after the procedure, spinal fluid can leak. It causes a major headache like one you have never had before
( and I get migranes!) Anyway, if he gets one he needs to get to the hospital right away for something called a blood patch. I am glad I knew about it ahead of time. I told the ER doctor what the problem was so I got faster treatment, but it still took hours for me to get it done. Just check into it it pays to be prepared. Also, did his brain MRI show something called Chiari I malformation?? If so, let me know. Many doctors don't think this is an issue but it can cause many problems. Spinal taps aren't even recommended if he already has Chiari ,it can make it worse. Hope some of this helps.....

 

[breezy1077]

I feel so much for what you and your family are going through. I am also going through similar issues myself and only have a "movement disorder" diagnosis so far. This is after 4 years! Sometimes there are no easy answers. The doctors can only treat the symptoms.
Anyway, I wanted to make sure you research spinal headaches before he has a spinal tap. When I had mine a few years ago. I was warned about the possibility of it happening afterwards. And that is what happened to me. Essentially if the hole doesn't close right up after the procedure, spinal fluid can leak. It causes a major headache like one you have never had before
( and I get migranes!) Anyway, if he gets one he needs to get to the hospital right away for something called a blood patch. I am glad I knew about it ahead of time. I told the ER doctor what the problem was so I got faster treatment, but it still took hours for me to get it done. Just check into it it pays to be prepared. Also, did his brain MRI show something called Chiari I malformation?? If so, let me know. Many doctors don't think this is an issue but it can cause many problems. Spinal taps aren't even recommended if he already has Chiari ,it can make it worse. Hope some of this helps.....

Thank you so much! Sorry you have to go through this too . I'll have DH call today to find out. Thank you.

 

[Mackey Mouse]

Hugs Breezy, just following what is going on... hang in there..

 

[debbido71]

You're Welcome. Let us know what he finds out.

 

[breezy1077]

DH had the spinal done today. Obviously we don't know anything yet, but he got through it ok and did not have any pain or headache, just some discomfort. Thanks everyone, I'll keep ya posted.

hugs to all who find themselves on this forum.

 

[breezy1077]

I spoke too soon on the spinal tap. He is having a reaction. He had back pain yesterday and today he has head and neck pain that also radiates down his arms. I've given him pain meds and we have a call into the Dr..

Does anyone know if this warrants a call to Dr., or is it normal?

 

[disneyloveNY]

duplicate

 

[disneyloveNY]

Originally Posted by debbido71
I feel so much for what you and your family are going through. I am also going through similar issues myself and only have a "movement disorder" diagnosis so far. This is after 4 years! Sometimes there are no easy answers. The doctors can only treat the symptoms.
Anyway, I wanted to make sure you research spinal headaches before he has a spinal tap. When I had mine a few years ago. I was warned about the possibility of it happening afterwards. And that is what happened to me. Essentially if the hole doesn't close right up after the procedure, spinal fluid can leak. It causes a major headache like one you have never had before
( and I get migranes!) Anyway, if he gets one he needs to get to the hospital right away for something called a blood patch. I am glad I knew about it ahead of time. I told the ER doctor what the problem was so I got faster treatment, but it still took hours for me to get it done. Just check into it it pays to be prepared. Also, did his brain MRI show something called Chiari I malformation?? If so, let me know. Many doctors don't think this is an issue but it can cause many problems. Spinal taps aren't even recommended if he already has Chiari ,it can make it worse. Hope some of this helps.....
AS Debbido71 said, it definitely warrants a call.

 

[dee47]

I spoke too soon on the spinal tap. He is having a reaction. He had back pain yesterday and today he has head and neck pain that also radiates down his arms. I've given him pain meds and we have a call into the Dr..

Does anyone know if this warrants a call to Dr., or is it normal?

Call the doc or go to the ER. If the doc doesn't call back quickly go to the ER. Serious complications of spinal tap are rare but not unheard of, and even something as simple as a leak needs attention. He needs to be checked.

 

[breezy1077]

Thanks everyone!!! I made him call again because of your responses. The Dr. said that if he developes a fever or if the pain gets worse - he should go in for the blood patch - I assume that's what they were referring to.

He is on strict bed rest for the day per doctors orders. If any of the above happens, or if he's not better by tomorrow - I'm taking him back in.

Thanks again to everyone - I'll keep y'all posted.

Oh, and I've already gotten the speech from DH I mentioned earlier and knew I'd get if things didn't go well - "shouldn't have done it - they're not even going to find anything - blah blah" He's a stubborn one. I know I'm doing the right thing in pushing him to get the tests though. Thanks for the support .

 

[dee47]

Actually a fever would be a sign of infection, and he should go in for IV antibiotics. But they'll figure it out

Hang in there. You're a strong woman and we're all rooting for all of you! I can understand your husband's feelings -- he's getting all this really unpleasant stuff done and no results that can help him...That's why it's your job to keep pushing him (like you do so well!). It's really tempting to give up if there's no one to say "No, we HAVE to figure out what's going on!"

 

[Mackey Mouse]

Reading as always.. Breezy, you keep pushing. You need an answer on what is going on with your DH.. Hugs, hugs, hugs..

 

[breezy1077]

He's getting worse, so he's agreed to go back to the hospital tomorrow (that's how I know he must be hurting pretty bad).

Just updating and a little worried.

 

[dee47]

Why tomorrow???? ERs are open 24/7.

 

[Mackey Mouse]

Please let us know how he is doing... I hate that he is in so much pain and they cannot find anything..