Returned From Cleveland Clinic

[Maxine]

I wanted to update you on my visit at the Cleveland Clinic. I saw Dr. Ajit Krishnaney on the 8th floor spine center. He sees (CCI) "some" cervical cranial instability, but nothing that warrents surgery right now due to the risks.

He said there is pannus growth, but also said it could be an artifact of some kind. However other physicians have said this is pannus, even the NSG at the U of M.

I told him about the excessive movement, and the recent headaches on the lower cranial area of my head, and spreading to my right temple.

At least the Cleveland Clinic has admitted there's some instability

I told him I was concerned about the right vertebral artery being enlarged, and the combination of poor vascular tone from the EDS, and the instability in the same area. He said the benefits from surgery were outweighed by the risk of injuring the vertebral artery. He was respectful, and listened to me as I explained the EDS connection to CCI. I was pretty amazed, because were were able to agree to disagree, and he was still willing to listen to my frustrations in regards to the lack of understanding in the bigger health institutions on CCI related to EDS.

An EMG was done on my right arm, and according to Dr. Krishnaney it was normal for the most part. I didn't see the results, he read them off the computer. They did a neurological exam, and my gag reflex is missing. There was no mention of other areas of my spine that also have problems. The desiccated disk on t8-9 causes a lot of problems, and bone crushing pain if I stand or use simple body mechanics too long. I have had deep strain on my inner tendons of ligaments on the left side of my neck due to overuse from spine being so weak. This is from weak muscle tone also. I obviously can't exercise my neck muscles. the headaches continue, and they are disturbing in that they are sharp and intense, and sometimes come when turning my head to the right.

Dr. Krishnaney did not agree with most of the things diagnosed, but said he could be wrong, and said he would refer me to Dr. Gordon Bell. http://my.clevelandclinic.org/staff_direct.../Staff_701.aspx

It looks like Dr. Bell has extensive knowledge of the spine, but I'm betting he will not know the effects of EDS on the spine. The mechanics are different, as EDS causes excessive movement from LOOSE joints verses rheumatoid arthritis causing limited movement from STIFF joints. However, the end result is the same-------damaged joints and ligaments which cause stress on the spine. HOWEVER, it seems EDS can accelerate the spinal stress and damage due to the excessive movement. I can hear the excessive movement, and FEEL it. This is much different then cracking joints, this is movement that is not natural. Subluxating is just plain scary in the cervical/cranial area. The doctor didn't seem to believe I'm having a subluxating problem, and said I must be feeling something else.

As I said previously in other e-mails, my main concern is the vertebral artery, and the type of headaches I'm having. These are not my usual occipital headaches from the CCI, there's the added dagger/ice pick shooting pain from the base of my cranium on the right.

Have you had any experiences with the Cleveland Clinic about EDS? Have you had any discussion on EDS and the relationship of spine instability with any doctors? I tried to explain as much as I know, but I'm not a doctor, and my knowledge is very limited compared to a geneticist specializing in EDS, and any information I share will probably be dismissed and not respected. Many patients with this get worn down physically, and it's very difficult for them to continue advocating for themselves.

I will keep you updated on any other information on the Cleveland Clinic physicians. I still have another appt. follow up with neuromuscular doctor on Sept. 14th. I'm not sure when I'll see dr. Bell, as they have to see what his schedule looks like.

I didn't list all my symptoms, as I didn't want o make this longer then it already is.

I'm in so much pain right now, and the vertebrae just below my neck is pulling to the right and is swelled up. During the EMG they also inserted a needle on the right side of my neck.

Maxine :0)

[mjan]

OMG...all I can say is how BRAVE you are..taking on the Medical experts..sticking to your guns..needing so much help.

My guess is that YOU are helping THEM..learn from you..and help the next person that speaks a similar condition.

Just sending HUGS..and HEALING VIBES..

BELIEVE in being directed SPIRITUALLY..and watch and see your MIRACLE unfold..

Warmly, Jan

[sandymbme]

I don't have EDS, but I have been seen at the cleveland clinic and firmly believe that some of the best physicians in the world are available there. I get seen at the headache and facial pain clinic by Dr. Mark Stillman. I had suffered from a migraine for 9 months that no doctor in columbus could make head or tails of. After just taking my vitals he knew right off the bat I was suffering from pots, and a TTT confirmed his suspicion. Stay committed to the process and hang in there. I will pray trhat the doctor you are referred to will be able to help you find lasting relief!

[juliegee]

(((((Maxine)))))

[Maxine]

Thanks for your support and replies---

I'm just glad he didn't dismiss me altogether, and didn't kick me out of the room when I asked about a part of the neuro exam where they squeeze the fingers. I asked him why they do that because if no one could squeeze your fingers wouldn't it be too late-----so what's the point with that? I know that they check to see if strength is even on both sides, but everyone has a stonger side then the other. I asked about slurring speeck, and the fact I can't walk one foot in front of the other, along with hyper relexes and no gag reflex, and why this wouldn't warrent further investigation. Come on, this is the Cleveland Clinic. We discussed my case for a bit loner, and he was open minded. He then said we'll have you see another spine specialist who is one to the best there at the Cleveland Clinic. 

Who knows, hopefully he's open minded and will listen long enough to have more discussion on my "weird case" with some other doctors. Maybe if I still have the strength to continue advocating for myself and others who have this crazy stuff it will bring some kind of attention. Even if it's bad attention by them thinking I'm half out of my mind, maybe at some point some GOOD EARS will hear it and say this seems an odd thing for a woman to try to get attention for-------wouldn't she use something more obvious to get attention? Wouldn't it be easier then trying to use some rare disorder that many physicians haven't heard about? Where would someone get information on this if they haven't already been dealing with this for years?

I respect doctors, and all they have to go though to get their MD. Having the MD after their name is a privilege that should be humbling knowing people's lives are in their hands. 

The swelling on the back of my neck is still there, and also on the right side of my neck near clavical. It's not a good situation, and I don't want attention this way.

Maxine :0)

[mkoven]

I know how frustrating this all is. It does sound like a partial victory. Definitely follow up with the other guy. Of course the problem concretely becomes what to do about the instability, if he is indeed right that the risks are too great. And maybe you will need to be seen by one of the half dozen people in the country who are experienced with this type of problem in eds.

Interesting about the gag reflex. Do you have trouble swallowing? That's been one of my recent issues.

[Maxine]

Thanks Mkoven,

Yes I do have problems with swallowing, and often choke on liquids.

My Missing gag reflex has been there for a while, and during Christmas---(in fact it was Christmas Day), I had to go to the ER for a throat culture. It was positive for strep. The ER doc noticed the missing gag reflex, and commented that he put a big old swap back there, and was amazed I didn't gag.

The same big old swap was used duing my exam at the CC.

I hope the next appointment goes well, and this doc isn't too "old school", and is open to information on EDS, and how it relates to spine instability.

Maxine :0)

[mjan]

Again.. I am hoping and praying for YOU..but even more for these docs to get it together.

Just wondering...how bad is it if you do not have a GAG reflex? Aspiration risk?

I too have had swallowing issues..everything ruled OUT (GERD ETC) so "I" think its CNS

Told one doc that I sometimes "forget" to swallow. He never heard of that.

I walk around with water in my mouth.. then cognitively recognize that I have not yet swallowed.

Go figure

YOUR MIRACLE IS ON ITS WAY!!!!

Jan

[mkoven]

I think swallowing is a brainstem-controlled thing. If you have compression from cci, chiari, or something else, it could be affected. Mine is worse if my neck is not perfectly positioned and when I'm tired. I also have a worse time with liquids, like the back of my throat doesn't know to close. Just had a swallow study, but it was earlier in the day when I'm better. They did see a little liquid penetrate, but not enough to be a danger. I was told to mix this product called "thick-it" to turn liquids to a more pudding like consistency to facilitate swallowing. It does help--just a little gross. It's something we're following.

[Maxine]

Thank you---

When I had my chest x-ray it was mentioned that I had mild nodularity mild and interstitial prominance.

My PCP ordered a CT scan, and I gave my pulminologist a call. My pulminologist said the CT did show very mild institial disease, and said it hasn't changed in three years. This could be from an aspiration issue, as I know there has been a few times I have choked really bad on liquids and my own saliva. Really, we have no way of knowing, as CCI isn't well understood with EDS as a cause, so it's not investigated any further, or the consequences resulting from it. I often wonder what's a life worth to some of these medical institutions? CCI resulting from anything is worth investigating----even if it's not clear cut on the MRI. If the pannus growth is there, it didn't get there without some kind of friction. This friction would not happen without instability.

I don't care if the pannus growth has been stable and not grown more. If I feel horizontal movement, and shifting when I look up, then the pannus growth will continue. I would just appreciate a good reputable medical institution like the CC to be willing to take this seriously and keep a watchful eye on things. If they would just do that, I'd be happy. I told the NSG this, and he seemd to be OK with it.

I'm advocating for all of us who deal with this, just as I still do for dysautonomia, and EDS alone. I'm stunned there isn't more known about this since the consequences can be so tragic. The NSG even said I could have problems with my brain arteries, and people with EDS need to be watched for aneurysms. This is precisely why I need regular check ups on the vertebral artery, especially since I have severe sharp pain in that vicinity.

Maxine :0)

[Maxine]

Oh, I also wanted to add that they do have a sitting CINE MRI. I asked him if they had an MRI to see what we look like with gravity, since laying flat on a table with your head locked in one position doesn't seem an accurate test to find instability that happens when a person is in motion using their normal daily body mechanics. Then he told me they do have a sitting MRI, but it was a CINE MRI.

Hey, it's better then nothing.

Maxine :0)

[bxd20]

I realize this thread is extremely old, but I believe I’m dealing with CCI or AAI and Maxine’s post seemed quite relevant. I’m being seen at the Cleveland Clinic.  Dr Krishnaney does not see anything on my supine MRI or CT so he won’t see me for an appointment. I was told by his nurse that Cleveland Clinic doesn’t do standing MRIs. 

I’ve been suffering over a year, a chiropractor injured my neck.  I tried resting it for months. PT for months. Massage. I don’t think it’s muscular. Trying to know without a doubt if ligaments were damaged and I have instability or not. 

 

My symptoms are: neck pain, lightheaded, headache, nausea, tinnitus.  Symptoms 99% resolve when I lay down, and get bad when I sit up without head support or stand.  I can only be upright for maybe 15 minutes at a time.

Brian

[Guest KiminOrlando]

Mayo wouldn't do a standing MRI either. See if a regular doctor will order it. I got mine done locally and brought it with me to another specialist. The supine MRI at Mayo was fine. Turns out the standing one with flexion showed instability and compression. A well published neurosurgeon recommended surgery. I am a staunch believer in standing MRIs for dysautonomia patients.