Very Productive Visit With My Eds Geneticist

[Maxine]

Yesterday my husband took me for the three hour drive to see my My EDS doctor/Geneticist. I was is a bad mood the whole way down there for several different reasons. One of them being missing my friend who was supposed to be going down there with me. We started to schedule our appts next to eachother since she lives near me. MY husband would give her a ride saving her the trouble of finding someone to take her there. She passed away from a ruptured aorta in August-----complications of her EDS is what I was told.

Then the weather was kind of shakey, and we didn't know if we would hit an ice patch at any time. We have a 50/50 chance of snow. On the way back it was a continuous mist hitting the cold ground, and it was pretty scary.

The appointment went so well, that it was worth driving in the bad weather conditions. The doctor spent a long time with us, and in fact I felt kind of bad about it. It didn't appear he had any other patients yesterday, unless I was his last one. We had a long discussion about my cervical/cranail instability, and the difficulty most EDS folks with this type of instability have trying to get neurosurgeons or orthopedic surgeon to take them seriously. The othopedic surgeon who has suggested the c1/2 fusion on me has recently started doing CT scans with head rotated to the left and right which shows a much clearer picture of any gaps and instability verses the traditional flexation/extension MRIs and x-rays.

This is something we may do for me to get more of a diffinitive answer, and to validate my instability in the eyes of the doctors I have seen who are in denial of my instability. Unfortunately they seem to think I'm in denial that there is absolutely NO INSTABILITY.....hmmmmmm. Well it's kind of hard to NOT think instability is there when I'm feeling my head subluxate constantly, and can't sleep comfortably on my side without it feeling like my head is pulling away from my upper spine. He also suggested possible injections to the area--(possibly steroids) to help with the pain and swelling. This may help for an extended period, or it may not. This is painful to do, and I have no way of knowing how it will affect my POTS, so it's a big decision.

He is concerned about me walking around with instability like this much longer as it's wearing me down-------we both are. We discussed the swelling near my lower right neck and clavicle, and the conclusion is it could be backed up lymphatic fluid, or vascular congestion possibly due to the right vertebral artery making up for the missing one on the left. I talked about how the MRA report from NIH said the left vertebral artery is missing on the brain MRA, but a recent ultra sound of vertebral arteries shows flow in left vertebral artery in my neck. (missing in brain, but not the neck---so what happened in between?) The MRA from another local hospital shows it missing also, confirmed from a local neurologist. He said it's possible that it's so small it can't be seen in the brain MRA. I told him my husband and I saw the MRA, and the onle on the right can clearly be seen, but there nothing on the left, and Dr. MCdonnell from NIH said it's not there either. Whatever it is, it's not normal, and my right side is trying to compensate. I need to watch out for blood pressure spikes, as this could cause a stroke risk. He said work with the neurologist that I'm seeing at the Cleveland Clinic. Based on what we can both see on the notes from the CC neurologist, he is following the lesions in my brain, and he needs to follow up on the vascular abnormalities on the back of my head and neck.

We discussed the ignorance on EDS, and how the media has portrayed it as a side show, and it has diminished the seriousness of EDS. It's very sad that such a serious disorder has been sidelined like this from the media, as we need exposure, just as much as all of us do that have ANS dysfunction. Many of us have POTS/ANS dysfunction secondary to connective tissue disorders.

I told him my PCP and general surgeon don't want me to have traditional colonoscopy due to the CCI (cervical cranial instability). They are concerned about sedation and me possibly needing intubation and extending my neck back causing further damage. THe general surgeon knows about a new fecal test that can detect polyps, and she's now looking into this. The double contrast barium lower GI with air didn't seem to pick them up last year, but it was hard for the radiologist to determine if it was fecal material or polyps. (sorry about TMI)

The EDS is progressively damaging areas all over my body, but especially my spine. My feet, fingers, knees, and right scapula have had a lot of trouble lately.

I'm glad my EDS doctor is so good with his patients. He's going to send reports to the doctors at the Cleveland Clinic, as well as Dr. Grubb. He'll also contact the orthopedic surgeon and discuss my CCI, and the CT scan with neck rotated.

This doctor, along with Dr. Grubb helps me hang on to hope.

Maxine :0)

[delphicdragon]

What an awesome and productive visit!!!

I completely agree that the media portrays it as a side-show which stinks. I'm tired of people (doctors especially) saying that I'm like the "indian rubber man". Yes, I am, but there is so much more to the disorder - including PAIN and DAMAGE. How nice to have a competent geneticist on your side. I'm thinking of finding one that knows about EDS, but the one who diagnosed me was about 70 miles from where I am now.

Great to have someone in your corner

Sara

(PS- What part of the country are you in? I'm in the Northeast - perhaps your geneticist might be close to me)

[Maxine]

I'm in NW Ohio.

Thanks for your reply and support. IT is difficult to find a geneticst who specializes in EDS, so I feel blessed to have a good EDs doctor.

My CCI has caused so many other problems that it's very difficult to understand how those docs at the Cleveland Clinic can't get this.......it's so obvious.

I think it's about liability-------they're afraid of it. I have a friend in Calf. getting the same run around. They shouldn't be any more afraid of this then a heart surgeon doing a triple bypass. Another thing is ignorance, they just don't know enough about it-------AND they think we're nuts.....

Maxine :0)

[delphicdragon]

Ah shucks! NW Ohio isn't closer to me. :-(

I think that's the big problem with medicine - ignorance. The doctor's don't know about it, so they're afraid to treat it, or they think it's benign when it isn't. Sigh. Waiting for medicine to catch up with molecular biology and waiting for molecular biology to catch up with life....

Sara

[janiedelite]

Congratulations on finding a doc who will try to address your cervical instability! I know you've been looking for a knowledgeable EDS doctor for years.

And yes, I do think that a lot of docs brush us off because of liability. I agree that doctors need to be held accountable, but after working as a nurse for 7 years I have seen many occasions when patients or their families are looking for a way to profit. (I'm NOT trying to start a debate regarding malpractice, just giving the other perspective of why sometimes doctors hesitate to treat complicated cases.) This is why I'm so thankful when doctors are willing to try to help, even if they admit they don't fully understand our problems.

It does sound like you finally have a good medical team behind you!

[Maxine]

Thanks,

Unfortunately, this is a risk doctors take. I know you don't want a debate, but I'm a warrior of sorts with this business. I'm in the midst of trying to hold the doctors accountable who took my mother's dignity away. We found out she had terminal cancer 48 hours before she died, and after finally getting the courage to look into her files it made me sick what I saw. Many CTs, MRIs over the last several years with possible neoplasms in lungs, lesion on liver, and possible lesion on kidney. Her last CT scan was sat on for about two weeks while they sent her to physical rehab. This was the last two weeks of her life. I remember the snow melting, and sensed her life melting away, as my father and I knew something much more serious was going on. She was in and out of the hospital during Nov, Dec. and Jan with HUGE blood clots, one traveling to her lungs. We were told of a bladder tumor in Nov., and the doctors said it didn't spread, and it wasn't very big. Hmmm, this must have been she started when she had the TIAs. She had BIG red flags of advanced cancer, yet none of her docs had a clue.

THIS is not about profit------(money). We have a doctor in the family, we know frivolous law suits happen all the time to different doctors. It's these idiot docs who shouldn't have a license that cause this burden on the other physicians who actually know what their doing.

I want these doctors to answer for this horrible injustice. I've seen animals treated better. My mother was forced to get dressed in her street clothes every day on the last week of her life. On the 23rd of Feb. her body started to shut down. OOPS, the urologist thought he should NOW look at the CT scan done two weeks previous. He told us a horrible mistake was made, and she had cancer in her lungs, pancreas, abdominal wall, abdominal lymph nodes, liver, and BLADDER. She had MAYBE three months to live, and he would get hospice arranged ASAP. We had a meeting with hospice on the 25---less the 48 hours later. 3 hours after that she died. Multiple doctors were involved, and I'll see to it that they all answer for it. I have all her files now, and I will have her films once my dad gives those to me. I'm not afraid to go nose to nose with any doctor, and have done so recently when one tried to tell my physical therapy was in order for me----arobics! THIS DOC will get a nice note for my EDS doctor. It's no different then customer service, other then the fact that it's our life that's at stake. With this in mind, the passion for a patient wanting the best possible service from their doctor in certainly understandable.

I don't care if I ever get a dime, but those doctors who treated my mother like a piece of meat WILL have exposure of some kind or another, and so will the corporation that houses the hospitals that were involved in this awful crime.

The files are huge, and I only saw the first few pieces of paper, and it's obvious how horribly inept these doctors were. It's unbelievable that they have thier medical license.

I understand what your saying Thankful, but this is the wrong person to bring this up to. When someone decides to go to medical school, they are made aware that different specialties have different risks, and the malpractice rates can be very high depending on what type of medicine they specialize in.

I haven't been looking for an EDS doc for years. In fact, I was lucky to find one fairly early on once I suspected the EDS. I had EDS all my life not knowing it. It's a good neurologist/neurosurgeon that I have been trying to find for years---- .

I just saw my mothers files days ago, so I'm still raw, and still very angry. It will take time for the anger to dwindle.

This is so beyond what anyone could imagine----watching this kind of inhumane treatment of an older defenseless dying woman. I'll never forget when they kept putting the comb in her hand trying to get her to comb her hair as if she was mentally challanged (like she didn't understand what they were telling her)----they talked down to her. Her arm would just drop to her side dropping the comb. She was too weak, as it was only days after this that she died. Oh, and lets not forget about them cutting back her pain meds.-----as you can imagine this would not be the thing to do to someone with END STAGE CANCER. When someone is dying of cancer, they need hospice for many months, compassionate care, pain control-------------and most of all, their dignity.

My mother had hospice care for three hours, and it was at the third hour of enough pain control that she must have decided she wasn't taking any more chances, and took this opportunity to hold on to this little piece of dignity and gently pass away.

Also, my experience with "stalker nurse" didn't help. I"ll never forget this, or will never figure out what/who was behind the whole thing.

Not only do Doctors need to be held accountable, but nurses too. They all cover for eachother's behinds----------the bad ones that is......... the good know who they are, and the bad know who they are. Eventually what they do comes back to them......

I have been fighting for the medical care I deserve for a long time, and it appears that a few doctors are doing their jobs, and some go beyond the call of duty, and those are the ones I treasure. It's these docs that sometimes don't get respected by thier peers because they go against the grain. They fight for what they believe in, even if it's not conventional.

Maxine :0)

[janiedelite]

I'm glad you finally got to see your mom's records, and that you had the strength to look through them. I'm so sorry for the suffering she had to endure. It sounds horrendous, and I hope that those responsible are held accountable.