Cervical/cranial Instability Making Pots Worse The Ever

[Maxine]

I had an appt. scheduled with the surgeon yesterday.

He looked at the 3-D CTs from the hospital that took them.

The surgeon was able to see that I had instability of 7.9mm on the right, and 7.5 on the left, but the films were not as clear as he would like. He gave them specific instructions on what to do, but of course they didn't follow what he wanted. He wasn't surprised about the films being this way, and said this has happened quite a lot with films from other locations.

He wants me to come back to Cincinnati to have the 3D CT taken there. He said the CT techs didn't even do 3D in the right areas, or it might even be 2D.

I asked about the vertebral artery on the left missing in the brain, but not in my neck, and asked if the instability could affect this. He said yes it can, and said the vertebral artery blood supply is likely cut of in the c1-c2 area, and explained how the anatomy is with the vertebral artery in this area. I asked about the right vertebral artery being overloaded because it's compensating for the left vertebral artery.

I told him it's enlarged already, and I said I was worried because the vascular tone with my EDS is poor, and the right vertebral artery could rupture. I already have headaches now on the right side, and it travels down the right side of my neck. When I have the headaches get very irritable, weak, and if I turn my head too quickly my balance is thrown off.

He said I need surgery. I asked him about the on going issue on why radiologists can't see this instability when it even looked obvious to me. He showed my husband and I the difference on the CT scan. He showed us the measurements. I asked what normal was when the head is turned to the left and right. He said it should NOT be more then 1mm.

I noticed that I have to be careful when I wear my hard collar, as if I put in on too tight I'll get a headache on the right side of my head. I can't put any pressure on this area. It's difficult because I need some stability with my cervical collar, but if it's too tight then I end up with a pounding headache. I noticed this wearing it on the way home from Cincinnati yesterday. I almost passed out when I got up, but noticed when I released the collar it got better, but not the headache. I took a while for that to get better.

As I said previously, when I turn my head to the right I get the throbbing head pain. It depends on the day, but there's times when it scares the heck out of me when it gets really bad, and I can't move my head at all.

Anyway, I have to go back again to have another CT done, but Husband has to see when he can get the time off.

He has time off in May for vacation, and we are planning on going back then, so he can save family leave if surgery is done. I'm hoping to delay surgery until after the EDNF conference in July. We signed up, and made hotel reservations already.

I asked the Doctor/surgeon to send a note to my PCP because I need to follow up on those lesions found on my liver. They said most likely hepatic cysts, but due to family cancer history genetic testing has been done for lynch syndrome, but I don't have the results on that yet. Docs here don't want to do a colonoscopy, so I'm going to Cleveland Clinc. I need the documentation of instability in my records. I'm thinking the Cleveland Clinic still won't take it seriously, but when I have sedation I need to have the instability documented due to the breathing problems I have. Intubation could be dangerous if the anesthesiologist isn't aware of the instability.

The University of Mich. did take it seriously at first when I went there for the tooth extraction. However, when they read the notes of an older NSG who I saw there in 2005, they changed their opinion after the NSG said I didn't have instability. The oral surgeon was rough, but he did have me wear my collar. His lack of concern for my CCI caused my symptoms to worsen after the tooth extraction.

I'm really tired of dealing with this mistreatment from the different physicians I have seen. My POTS has taken a serious dump lately, and now I have near syncope when I'm sitting. It's not very often I get that, but definately worse then I have been in a long time when trying to get out, or standing for any length of time. Walking any distance is almost impossible. I can make it down one wing of the mall, and maybe browse a couple of small stores.

Not only do I have the CCI, but I have the rest of my symptoms to deal with, and because of the treatment I have had on the CCI issues, the rest of my health issues have suffered also.

Sorry to make this long, but I am very upset about the CCI not being taken seriously, and I'm concerned if I had an emergency I'd be out of luck.

I also have the disc. dessiccation on thoracic spine, and this has caused a lot of pain and problems also. All of this is really upsetting, and it's been really rough on me----AND my husband.

Maxine :0)

[Maxine]

Ok, I thought I would bump this to see if there might be any responces the second time around.

I'm assuming those of you who have dealt with CCI know this is a very difficult journey. I need support more then ever.

I've been accused of "having this in my head" for an extended amount of time----much longer then I imagined because I have so much documentation right now----EVEN NIH, but it doesn't seem to matter.

Something feels strange...I can't quite put my finger on it....

Maxine :0)

[lieze]

Maxine,

Just letting you know that I did read your post and I wish to offer support.

You just have so much more knowledge related to all of this I didn't think I had anything to offer.

But I do care.

lieze

[Shimoda]

I'll bump it again.

You've dealt with a lot of crap for very real and very painful spinal problems.

I go to a chiro on Saturday myself, beginning for myself what very well could be a similarly agitating path. I thank you for setting me in the direction with this spine thing.

People don't really seem to care. I've mentioned this to numerous doctors and no ones done 3Ds or taken it seriously at all. I feel like the clock's ticking and they don't give a crap.

I'm so sorry. You have terrible pain which no one should be forced to deal with, and the emotional toll just plain exhausting.

Regarding the time off, things should (hopefully) work themselves out. If worst comes to worst, maybe your husband could appeal to his bosses' sense of human decency?

Feel better. You're in my thoughts.

- Shim

[janiedelite]

Hi Maxine,

I'm sorry that I missed your post earlier. I don't have CCI, but I understand what it's like to be overwhelmed by what is going on with our bodies! I'm sorry you have such difficult choices to make. I'll be sending prayers that, whatever path you take, things will go as smoothly as possible. I'm glad you have such a supportive husband, but I understand how helpless he must feel also.

Please, keep us updated!

[anna]

Have you ever read this article?! :-

Ehler Danlos syndrome with cervical dislocation: An unusual case

Neeraj Awasthy, Karam Chand

Departments of Pediatrics and Neurosurgery, Safdarjung Hospital, Maulana Azad Medical College, LNJP Hospital, Delhi-110 029, India

Sorry I can not link this article for some reason, well I'm not to good at all this techno stuff. Anyway it might make some interesting reading, not sure, I stumbeled across it while looking up stuff re my and my kids necks.

Anna

[Maxine]

Thank you ALL so much for your kind and thoughtful replies.

I really appreciate your support!

The scary part right now is getting past the cancer screening. Fortunately I have had contact with the Cleveland Clinic, and a very nice nurse called me and said the GI doctor there has worked with many POTs patients, and he will do the colonoscopy with little or no sedation. (That's all I've been asking for from local docs-----and my PCP got so scared he told me I can't have it done at all.) He suggested I do a virtual colonoscopy, but the prep was DOUBLE! I never heard back from him, as he was supposed to do the prep in the hospital. Sedation is very risky in the condition I'm in now. I went back to the surgeon who was going to do the first colonoscopy, and she said she would do a new kind of fecal testing that detected polyps. I called after a couple months passed by without hearing from her, and they told me my GI doc has all the information, and I should see him. I was thinking why didn't they tell me this 2 months ago? The GI doc did a lower barium GI 2 years ago because he refuses to do a colonoscopy due to the POTS and EDS.

The vertebral artery on the left has been affected by the instability, and that's why it's not showing up on brain MRAs---the blood supply is cut, which is taken up by the right vertebral artery causing that to be enlarged. This isn't good with the EDS, and along with the compression on the brain stem, this is the reason I can't handle sedation drugs right now----not to mention the risks with POTS. (The POTS is actually secondary to the EDS and upper spine and brain stem compression).

It's really hard trying to live life this way. Your support means a lot to me. My husband has been supportive, and he work many hours----sometimes 65 a week at the post office as a city carrier. He's worn out every day after work. He did get his bachelors degree while working for the PO, but stayed with the PO for the benefits, and knew an entry level position in accounting would be about half the salary he gets now. He made the decision to stay in school to have something to fall back on. With the post office losing mail volume because many people do bill paying on line now-----he's thinking about going for his master's degree. Maybe get into government accounting, but he really wants to do financial counseling.

I've worked as a commercial collections specialist for a long time, and I was also an office manager. I was in school hoping to work on getting my degree, but all this took over, and now i just struggle to do daily necessities like bathing, and taking care of our home. I feel bad for my husband who had to take over many of the chores around the house that I used to do.

I hope to get back to work some day part time, but the doctor at my SSDI hearing said my prognosis is poor as far as that goes. He said my disorder is progressive. I spent all these years trying to get validated, but in that moment when the SSDI doctor appointed for the hearing said this, I wanted to be in denial that it was really THAT bad. The doctor deemed me unable to work based mostly on EDS......but the POTS symptoms are what keeps me from being functional. It's the blood pooling, because the vascular tone is so poor from the EDS------this scares me, because I don't know how much more pressure the right vertebral artery can take becuase the left one is screwed up. I feel like a ticking time bomb.

Shimoda, thanks for saying this is REAL---it is! I feel like posting my medical records on here because I'm sure some people on here doubt all this could be going on----or maybe I'm trying to get attention. Before all this happend I used to hide in the corner when my only symptom was tachycardia. I continued to work ten years with this symptom as beta blockers controlled it, and I felt fairly normal.

Shimoda, please avoid chiropractors when dealing with your neck. It's not that they can't help, but for possible cervical/cranial instability (CCI) or other neck instability it can make things much worse. It's dangerous to have this area manipulated. I know it's a very daunting task trying to get doctors to believe you have something wrong in this area, but if you think about it, who would think of something like this to try to get attention? Isn't there a whole bunch of other illnesses we could fake much better then CCI. I think I know when my head is subluxating off my neck----------It's terrible when I can't sleep on my side because of this, but my apnea is worse if I sleep on my back. This is just a nightmare! If I was going to fake something, it wouldn't be this!

Keep trying to get your spine issues taken seriously. I know how hard this is------I'm still dealing with it----even with proof from NIH, and an other doctors----just NOT neurosurgeons.

THANKS AGAIN for your understandinf and support anna, shimoda, lieze, and thankful!

Maxine :0)