Rough Times

[Maxine]

First, I'm so sorry I haven't posted here in a while. I've been more cought up on facebook with EDS group, and EDS neck surgery group, and also supporting a good friend with her severe spine instability. I went to the EDNF conference in Baltimore in Baltimore Md., and also saw a surgeon at before the conference in Bethesda, Md. It was a great time putting the faces with the names, and finding out how much we have in common. Some people with EDS didn't have any POTS symptoms. I found this interesting, if not a bit confusing.

Anyway, the setback I'm having are both POTS and spine related. Both equally disabling which have left me mostly home bound. I'm not able to walk far, but do have those days that are few and far between that I can walk around target, or get out and visit friends or family. My husband has been supportive, and has driven me anywhere I want to go to get out of the house. The weather is horrible here, and the highs at night are in the single digits, and maybe 25 degrees for the high. (I HATE WINTER!!!!)

When I saw the surgeon in Bethesda, he confirmed the instability, and SO did the MRI! The MRI was a sitting MRI that was long over due.. The dynamics in entirely different when I'm sitting or standing. My spine is very different. In fact most MRIs should be done at least sitting. It's insane that this hasn't been done on me years ago. MY Clivo axial angle is off...it's only 128 degrees-------(this is bad). In fact this is so bad that surgeons don't feel that surgery will improve symptoms on patients who have 121 degree angle---(probably because damage is too long standing). This is what a bunch of us 50 year olds are dealing with!!!! We go too long undiagnosed. As a result of this my odontoid bone has pannus growth, (of course you have all heard I had this). I also have the cervical cranial instability, and now have thickening of the tectorial membrane near this area. In addition the MRI reports herniated/bulging disks on c2-3, c3-4, c5-6, (c5, 6, and 7 are fused and plated), c7-t1, t1-2, and t2-3. I have a blown disk on t-8, and bulging disks on L3-4, L4-5, and L5-S1.

On this same MRI report, it also states that I have narrowing of the subarachnoid space! I'm thinking, how did this go so long like this! I've had surgeons blow me off, who's name is on the same article written by the surgeon I saw in Bethesda about the exact thing I have diagnosed. Check out the article!

http://www.surgicalneurologyint.com/article.asp?issn=2152-7806;year=2010;volume=1;issue=1;spage=30;epage=30;aulast=Henderson

I feel terribly cheated fro the medical professionals that blew me off all these years. My EDS geneticist had referred me previously to a orthopedic surgeon who had also confirmed the instability. However, my PCP wanted a neurosurgeon to confirm it also, and I found a great one. Now he's recommending surgery, but I have no idea how where he will even begin with this mess. I have another appointment to see him (3rd. appt., as I saw him again in October.) We also had a discussion about the vertebral artery missing on the left. We had further MRAs and MRIs done to look at this, but this time the MRA was done with fat supression. This did show a view of the artery, but it look s black, and dead. It's not a working artery, and this is why most MRA views don't show it at all, whihc makes it unclear on what caused this, or if it's a congenital malformation. My EDS geneticist thought it wise to have a vascular surgeon on board during surgery. Basically, we won't have a real clear idea how bad it is until they go in there.

Meanwhile, worsening POTS, and horrible pain in cervical spine, and THORACIC. The reason I underline "thoracic" is because I feels that pain is worse on some days. It truely knocks the wind out of me. I feel like I'm breathing saw dust on those days. The last two days I've had an ICE PICK headache, and it feel like it's sticking in my left ear, and radiating into my lower left cranium, and noe today it's shifted to the right along with intense pain in upper back. I'm feeling so bad today it's making me dizzy!

I wanted to update you all, and I hpe you understand that my ability to multi task in more then one forum is not great. I still think about many of you and pray for the day this nightmare will end for you, and you can live a fuller life.

Thanks for reading,

Maxine :0)

[sue1234]

Maxine, I have been wondering where you were! I remembered you had gone to that conference and met with a doctor to get a sitting MRI. I remember you came back on and said how the trip/MRI exacerbated your POTS. I'm glad you finally checked back in! There have been a few "regulars" that haven't been on since probably this past summer, and I sit and wonder how everyone is doing.

It sounds like you have a lot of confirmation on your instability. So, can I understand that you think fixing some of this won't help the POTS??

[Maxine]

Thank you----

Well, it would be nice if the POTS was helped, but I have to remember POTs is part of the EDS also. I think the surgery is to stop the progression, and to save my life actually. This is not a great thing to have, and I know you know this, but I often find myself being judged because I look so normal.

I'll tell you somehting that isn't helping........................menopause!

The hot flashes make me feel like I'm melting, and I can't do anything!!!!

Thanks for replying, that means a lot!

HUGS,

Maxine :0)

[sue1234]

I was just reading up on Chiari 1, like I have done in the past. I don't know how I have overlooked this, but I see that one of the symptoms is nystagmus--jerky eyes. I have had that for about 15 years. And, I have the ear ringing and loss of hearing. ALSO, I didn't realize that one of the types of Chiari is associated with spina bifida--my niece died as an infant with that. I see that chiari can run in families.

I guess what I am saying is, I am always looking for a root cause, and try and bring all of my random symptoms together in case they paint a whole picture of something. Now, I have always just blown off my eyes, hearing, and neck issues. I also have scoliosis that could be throwing things off laterally with the head. I guess what it boils down to is people need to have that sitting MRI to be valid.

[schamsjj]

Hello I am new to this forum and have recently posted that I do have pots. I am considering asking my doctor for an mri of my spine. Are there different kinds of MRI's I should ask for that could potentialy look at all the possible areas? I am going to ask him this because the first time I had a symptom was after I hurt my back. But then I didn't develop pots for like six months after that. When I hurt my back unloading trucks at work, about a week later I had an instant symptoms of numbness and incredible weakness throughout my body.

Thank you!

Jared

[janiedelite]

Hi Maxine! Thanks for updating us. I'm so GLAD that you finally found a surgeon who wants to at least try to help you. The pain you are in sounds just horrible. And good for you for continuing to support others while still looking for help yourself!!!

[Guest tearose]

Hi Maxine!

Well hearing all you have been dealing with is incredible.

So the sitting MRI was very helpful in diagnosing you. ( I don't recommend the standing MRI...I passed out in that before I knew I had POTS! )

I hope any surgery that they suggest comes with some certainty it will help you. How are you best able to manage the pain right now?

Thank you for bringing us up to date!

Hugs,

tearose

[nmorgen]

Hi Maxine,

Sorry to hear that you ae dealing with so much. I'll definitely put you on my paye list and hope that you can get some help.

[Noreen]

Wish things were going better but glad to hear from you.

noreen