Dr. Cognetti now has the disk of my CT scan! He first read the report that I faxed and then requested the CT images. I am waiting for a call back from his office any day now.
I am nervous due to a complicated medical history, including Ehlers Danlos Syndrome, Chiari Malformation and extensive fusions on my cervical spine. I found out I have EDS after a show tubing accident where I hit my head badly. The ensuing years and symptoms finally had me diagnosed with Cervical Spine instability due to the loose ligaments from the EDS.
One year ago, I was also diagnosed with IH- Intracranial Hypertension. I took meds to lower the pressure in my skull and finally had a shunt placed in June. It is doing an ok job, but not a complete success.
My neurosurgeon ordered the CTA to look at my jugulars and it shows bad compression of both sides of jugulars by the styloid, C1 and digastric muscles. I think we now know why I have the IH!
I fear Dr. Cognetti will turn me away do to my health conditions. I am very healthy aside from the spinal conditions.
My heart is going to race every time the phone rings!!! lol
I hope all goes well for you Kitty9309. My advice is just to remain calm and see what he has to say. If he can't help you, he may be able to refer you to another qualified profession. When one door closes another opens sometimes. Don't ever give up on hope no matter how hard or complicated life has become for you. We don't understand why we were given these burdens but we are strong fighters and must believe that we can get back some normal aspect of life that was stolen because of our afflictions. Keep the faith and don't give up the ship! Take care and God bless!
when Dr Cognetti turned me down, i was incredibly distraught. I was in such horrible pain I just didnt think I could handle it anymore. But then I ended up finding Dr Samji who said he was willing to try to help me and it turned out great. Hang in there. No matter what happens, dont give up.
I called yesterday. I am in their system officially now. Dr. Cognetti is to review my CTV images he requested and then I am told they will call be back with his recommendations.
So, just a little more waiting. I am really hoping to hear back before I see my neurosurgeon next Monday.
Hey!!! I have EDS type 3 as well! Dr H did my TC surgery a year ago. I wonder how many EDSers are undiagnosed with Eagle’s syndrome. I am flying out next week. My health history last 5 years is long. I am afraid if I mail it, he will not want to treat me…:). So many other docs have done so in the past!! Especially local!!!
Hi Amy! I think we already know each other from FB. I'll send you a message telling you who I "really" am! :)
I also wonder about EDS and Eagles. SO many of Dr. Henderson patients are now finding out they have this. Could hypermobility of the ligaments cause the calcification and hence, compression/elongation? I will run the idea by my PT tomorrow.
I could see not having collagen would set us up calcification. Just like with your tubing accident, my issues didn’t get out of control until I fell down some stairs. Also, I had previous whiplash from car accidents.
Amy- I saw my PT this morning. He could not make the connection of abnormal collagen in EDS causing any of this. How can we have EDS (rare) and ES (rare) and all the other things we have? And it's not connected? It has to be in some way. Have you had any neck surgery?
Maybe it is the trauma and not the underlying EDS that sets off the symptoms??
In Amy’s world of theory…:)) scary when I can’t write a correct sentence…lol! But EDSers usually get arthritis as we age. With no collagen when that ligament get traumatized from car wrecks, falls, tubing accidents. The styloids probably gets scar tissue and maybe turns into calcification since there is no collagen to repair the styloid ligament. I know I have had some injuries and probably every time, there has been damage so much that the flexibility is gone on the ligament. I guess how it coincides is the BIG question.
That makes sense Amy. I sent my PT a really good article. He is very good with anatomy and knows about EDS and POTS, since many of his patients have one or both. I will run your theory by him after he has read it and see if he has any new ideas.
I guess the best answer would be from the good doctors who are treating this.
~~~ Is this Dr. Henderson the one in Maryland? I have an appointment with him in December and have all of the scans he requested: MRI and CT of the cervical spine.
Does he have a good reputation? I had one doctor (ENT who admittedly knows nothing about Eagle's) say they would not send a family member to him.
Thanks, Hopeful
Kitty9309 said:
Hi Amy! I think we already know each other from FB. I'll send you a message telling you who I "really" am! :)
I also wonder about EDS and Eagles. SO many of Dr. Henderson patients are now finding out they have this. Could hypermobility of the ligaments cause the calcification and hence, compression/elongation? I will run the idea by my PT tomorrow.
~~~ Well, I've been sick for 24 years with what I was told was fibromyalgia. The majority of my pain (which is severe) has always been in my face ... and always attributed to the fibromyalgia.
In January I knocked my head against my granite kitchen counter (don't ask!!) and started having terrible headaches, which prompted me to see a neurologist. She is a star ... Dr. Sabet ... and within 5 minutes said she thought I had Eagle's. She ordered the CT scans and my styloids are just over 6 cm on the right side and just under 6 on the left.
I've been sitting with this information since the middle of August, and it is driving me crazy! The soonest Dr. Henderson could see me was in December ... and since I wanted info asap I've been to three different doctors (ENT, Neurosurgeon and my fibro Rheumatologist) None know anything about Eagles.
I'm on a waiting list for Dr. Henderson ... and had the scans done immediately so I'd be ready if some opened up. They show I've got 'multilevel severe foraminal stenosis due to exuberant facet hypertropy' ... all moderate up to C6, then severe at C6 and 7.. And they say zero about my styloids!
My crani-sacral therapist looked at the reports and said I do not have Chiari ... and I'm not sure what EDS is, exactly.
The neurologist, Dr. Sabet, told me about Henderson and she said he was the best.
Well then, focus on your neurologist referring you to Dr. Henderson. I think some doctors, who can't figure it out, decide that the ones who may have the answer must be nuts! I don't get that thinking except that they must be insecure...
I was ill for 17 years off and on and 5 straight, until I saw him. My hematologist diagnosed my EDS (connective tissue disorder related to hyper mobile joints) and then I went to a geneticist who confirmed that I DO have EDS! She referred me on to Dr. Henderson.
My downfall was a snow tubing accident, that set off my unrelenting symptoms.
If you have any questions, please do not hesitate to ask! I am local to Dr. Henderson as well.
I as well have just been diagnosed with EDS and 8 weeks ago had my right styloid removed. I also have a " small" descending thoracic aortic aneurysm and it is being watched. I am only 47 and don’t fit into any of the categories of someone that could have a aneurysm. I am not obese, not old, no high cholesterol, no high blood pressure; I am not tall so not Marfans syndrome, so now they are sending me to a geneticist. I have relatives on my grandmother’s side who died of brain aneurysms, so I am hoping it is not type IV. I do have small joint laxity and a family history all over the place that would fit into various types of EDS, but no one has ever been diagnosed before me, not sure which type I may have. We will see! I would like to know if you find out anything from the doctor in regards to a connection between EDS and Eagles, please let me know. Have you ever heard of Dr. Dianna Driscoll or the forum web site for EDS called Surviving and Thriving and pretty ill .com? They have alot of great info on EDS.
BI hope you all get answers soon,
RB
,
Amy said:
Hey!!!!! I have EDS type 3 as well! Dr H did my TC surgery a year ago. I wonder how many EDSers are undiagnosed with Eagle's syndrome. I am flying out next week. My health history last 5 years is long. I am afraid if I mail it, he will not want to treat me..:). So many other docs have done so in the past!! Especially local!!!
Thanks for the support, Kitty! And everyone here, you are all the best!
I too had an accident that sent me over the edge. I'd already been sick for 11 years and then had an ocean accident ... fractured L3 and hairline fractures up the next 5 vertebrae. That's when all hell broke lose. I remember having cuts and scrapes (from the sand/shells) on my chin and chest/shoulders, so my head/face took a hit too.
I'd had face pain before the accident ... and now that I try to remember, I'm not sure that it was ever as bad as it got to be after the accident (which was in '99).
Hmmm.
I do have a question: what are hyper mobile joints? Is it similar to hyper reflexes? I know that when they check my leg reflex (just below the knee) I kick higher than a Rockette! My leg will kick out even if you hit above the knee.
Thanks again, Hopeful Kitty9309 said:
Well then, focus on your neurologist referring you to Dr. Henderson. I think some doctors, who can't figure it out, decide that the ones who may have the answer must be nuts! I don't get that thinking except that they must be insecure...
I was ill for 17 years off and on and 5 straight, until I saw him. My hematologist diagnosed my EDS (connective tissue disorder related to hyper mobile joints) and then I went to a geneticist who confirmed that I DO have EDS! She referred me on to Dr. Henderson.
My downfall was a snow tubing accident, that set off my unrelenting symptoms.
If you have any questions, please do not hesitate to ask! I am local to Dr. Henderson as well.
This is really strange. I actually first got sick in 1994 after an accident in the ocean as well. I got caught up in the surf and tumbled all about and hurt my neck. Symptoms began soon after. I recovered from that after several months, but was never really the same again. Then 7 years ago it all broke loose.
Hypermobility is what we always called "double jointed". It means the person has greater than normal range of motion in a joint/s. People can be naturally hypermobile or train to become that way- like dancers and gymnasts.
Ehlers Danlos is a hereditary connective tissue disorder caused by defective collagen. Some people are mildly affected (just loose joints and maybe even no pain) and other have widespread problems. It also affects our blood vessels, skin, internal organs and more. Here is a link that may help:
(I was initially suspected of having EDS when I went to a hematologist due to lifelong excessive bleeding and bruising and a strong family history of the same. It was later confirmed by a geneticist.)
Note: Fibromyalgia is listed as one of the misdiagnoses.
I would urge your geneticist to r/o the vascular form with a blood test. Mine did. Who is your geneticist? Mine is Dr. Francomano in Baltimore. She is considered the top doctor in the US to diagnose connective tissue disorders. I just happen to be very fortunate to live in Baltimore area, so seeing her was easy, besides the long wait.
Please update on your appointment. How do you feel since the styloid removal? Did you have classic or vascular symptoms? I have mainly vascular due to bad bilateral jugular compression. I still need to get an image up on this site.
I see my neurosurgeon Monday and will see what he feels the link with EDS and ES is.
I am familiar with Diana Driscoll. There are also a few good FB pages on EDS and one for jugular compression. Message me if you want the names of them.
R.B. said:
Kitty and Amy,
I as well have just been diagnosed with EDS and 8 weeks ago had my right styloid removed. I also have a " small" descending thoracic aortic aneurysm and it is being watched. I am only 47 and don’t fit into any of the categories of someone that could have a aneurysm. I am not obese, not old, no high cholesterol, no high blood pressure; I am not tall so not Marfans syndrome, so now they are sending me to a geneticist. I have relatives on my grandmother’s side who died of brain aneurysms, so I am hoping it is not type IV. I do have small joint laxity and a family history all over the place that would fit into various types of EDS, but no one has ever been diagnosed before me, not sure which type I may have. We will see! I would like to know if you find out anything from the doctor in regards to a connection between EDS and Eagles, please let me know. Have you ever heard of Dr. Dianna Driscoll or the forum web site for EDS called Surviving and Thriving and pretty ill .com? They have alot of great info on EDS.
BI hope you all get answers soon,
RB
,
Amy said:
Hey!!!!! I have EDS type 3 as well! Dr H did my TC surgery a year ago. I wonder how many EDSers are undiagnosed with Eagle's syndrome. I am flying out next week. My health history last 5 years is long. I am afraid if I mail it, he will not want to treat me..:). So many other docs have done so in the past!! Especially local!!!